DD – I am sick to death of the stigma!

changing-print-stigma

Something that really grates my carrot is how everyone wants to point the finger when all I mention is the word, “bipolar”.  My partner being bipolar apparently means that he hits me, that he’s manipulative, and a jerk.  What the actual fuck!?

Okay, things are not always rosy gardens in the world of making a relationship work with a bipolar partner… but bloody hell, are things always rosy in a world with autistics? Um. No. I mean, we are the ultimate in “special attention needed”.

I am so sick of people stigmatizing my partner because of his bipolar!

I am so sick to death of all this bullshit stereotyping and judging!

 


 

My “Vent”:

A Lifeline crisis worker told me today that bipolar means you are manipulative and dangerous and unable to have a relationship. Then, with my WTF reactions, this worker said he had to end the call because I wasn’t listening to him and “becoming agitated”. Of course I’m fucking agitated. You’re telling me something completely untrue about the man I love!!

Is he manipulative? No.

Is he dangerous? No.

Is he unable to have a relationship? No.

He’s just bipolar.

In fact, “bipolar” and “I’m upset about a disagreement we just had” was really all the Lifeline worker knew about him…. and suddenly, my partner is now some monster? Talk about stigma! And on a mental-health help line, nonetheless!

 


Unthinking responses?

Okay, so this isn’t my first stigma rodeo.  I have encountered so many bullshit responses to “my partner has bipolar”.  Like, when I have told close friends about him, and they say fucked up things like comparing our relationship to a highly abusive one….

I’ve heard:

  • He doesn’t hit you, does he?
  • Ohh, so he’s always angry.
  • He’s manipulative.
  • Sounds like a dickhead.
  • Should you two really be together?
  • You deserve better.

I deeply appreciate a Devil’s Advocate response from a friend, or a concern being aired, but to jump to the extreme conclusion is just…. well… if I may: it’s bipolar.

It’s as if I said my partner was Iraqi, and you were to say “He’s not a terrorist, is he?” or if I said my friend was gay, and you were to say, “Does he talk with a lisp?” or that I’m autistic, and you were to say, “You can’t be autistic, because XYZ“.

 

 


A Solution>>

I have an idea.

How about when you hear something you just take a deep breath, think your first thought but don’t say it, critique that thought and then take another deep breath, and keep listening to that person?

And maybe as the time passes as you listen to that person, you start with a simple sentence:

“I have an observation. I have listened to what you have said and I am still concerned about [stigma/ stereotype]. I may be completely wrong, but have you thought of that?”

And then listen.

And truly take in what the person says.

If they say their partner is not a manipulative jerk, believe them.

It might make your relationship better.

 

Just a thought.

Advertisements

New Year wishes and all that jazz

 

monochrome photo of person holding sparkler

Photo by Sumit Rai

*

Welcome to 2019!

I read on my Facebook this morning, a beautiful post by one of my friends– it started with:

“Hey folks. Something that doesn’t get said very often – I hope you get through this year”.

 

He goes on to say:

“I’m not going to wish you all the happiness you desire in 2019 because shit is going to go wrong, and that’s ok”

 

He says something that I think we really need to hear at new years’.

While everyone is floating around wishing happiness and lovely perfect moments, as if it is possible for us to wash away all the sadness or crap things that happened in 2018 by a clink of champagne glasses and splattering of confetti, he highlights a simple truth…

 

It’s okay to realize that SHIT happens.

“Eternal happiness is not a realistic goal. You might change jobs, or lose a job. Someone close to you might pass away this year, an artist or public figure, or inspiration to you might not make it. You might get sick, or just sore. One or more of your friendships or relationships might end this year. You might break a limb. You will probably start something new this year, a hobby or a goal, and that goal will get derailed somehow. Your favourite possession might get scratched, or dented, or stolen, or broken.

“Some days you might feel depressed as all shit. Life isn’t all rainbows and unicorns. But sometimes it can be a rainbow here, and a unicorn there. And that’s ok”.

 

As many of you know: mental health can drag you down and life can create moments that makes “happy” seem impossible.  If you’re depressed, a “HAPPY new year” is unpleasant and can feel alienating.

Yes, though 2019 is indeed a new year, it does not immediately assume that it will be this amazing something. A day passing does not magically change a lifelong depression.  I know, it can seem pessimistic to note these things, but I think it’s actually realistic.  Of course we all want to be happy, to feel beauty always… but it’s not always possible.  There will always be things that happen which we cannot control, and things that may upset us or hurt us, leading us to overreact or just feel pain.

Plus, we’re human, and that means suffering and pain. This is part of being alive. Let’s try to ride out 2019 in the best ways we can: in kindness, with self-love (if we can muster it), and with an open heart… to try to cope and thrive as best we can.

I think it’s realistic and beautiful to read such honesty in the new year.

 

My friend wrote a great deal in his post, and I am not sharing it all here… but I liked that he closes his message by saying this:

“Life is ups and downs. Sometimes you just can’t avoid the bad shit. There will be plenty of downs this year. I hope you find your way through them in your own way, on your own or with support when you need it, so that you can enjoy the ups when they happen.

Ask for help, and help others when you can. We’re all in this together. 

*

 

So, on that note,

I wish you a very authentic “do it your own way” new year with helping hands available if you need them, and kindness always.

Bless.

You “can’t have autism” because…

adorable animal animal world cat

Photo by Pixabay

Before (and since) I got my diagnosis, I have heard many classic one liners, mostly from unaware doctors and therapists, to explain why *in their totally unqualified opinion* I couldn’t possibly be autistic. Some are funny, some are down-right offensive, and most are– soooooo common!

Feel free to share the ones you’ve heard in the comments below.

 

“You can’t be autistic because….”

 

* You have a degree.

The number one reason I can’t possibly be autistic is this: because I have a degree.  In fact the more qualifications I have, the less possible it is (in many doctor and psychologists’ eyes) that I can be autistic.  I find this deeply offensive.

Yes, apparently, being autistic means I cannot be intelligent or able to achieve a degree from university. Hmm. What about Temple Grandin – PhD!?

 

* You are female.

According to some doctors, being autistic is a male only issue.  This is such ARCHAIC knowledge. Autism is a human condition, not a male-only issue. Plus, err… must I remind you: the most well-known autistic is Temple Grandin.. a female!

 

* You can talk.

Shock horror, I can talk!  Not all autistics are mute, mofo.

 

* You look normal.

I am not sure about this one…. but I think the doctors are referring to the distinct dysmorphic facial features seen in Down’s Syndrome.  While autism and Down’s share some characteristics, the facial features are rarely shared.

 

* You are sociable.

Lol! This was the most embarrassing to hear.  I wanted to scream, “I’m fucking pretending!”, but instead said something polite… I think I said, “mmm well, not always sociable”.  Yep, there’s pretense and coping; but there’s also that I genuinely do enjoy some people’s company. I think autistics are typecast as these sad awkward loners, but you know, some of us do make friends, have lives, chat with people. Just because I love to laugh and be with my small group of friends every so often doesn’t actually make me “socialable”, nor does it make me “anti-social”.

 

* You have a relationship.

I hate this.  The idea that autism (or any mental health condition, for that matter) means that for some reason we’re seen as less able or less willing to want LOVE.  It is true that some autistics are not interested in romance or sex, but similarly, some of us are!  I adore having Z. in my life, and I feel so appreciative of the connection we share.  Having a love-relationship matters a whole lot to me, and my autism shouldn’t mean I do not deserve that…

 

==

Any more out there?

Share your WTF “you can’t be autistic because…” reasons, and who said it to you.

 

5 Myths of Autism

“Truth is like the sun. You can shut it out for a time, but it ain’t goin’ away”.

–Elvis Presley

pexels-photo-164531.jpeg

Here are some hideous myths of autism, and a little back story of how they came to be prevailing thought… In case you were unaware, the myths presented here are the most commonly believed ideas about autism, and while completely WRONG, these myths seem to stick in popular culture.  I suspect this is because TV shows and films depict autistics in a very stereotyped manner. But you know, like most stereotypification, it’s a form of discrimination and it is actually deeply hurtful to the population in question.

Strangely myths tend to gain more traction than the facts, and that it something we MUST change. To be an advocate for autism, to protect your children and yourself, be educated on the truth.  The facts are presented here, alongside the myths.  Hopefully this list will help you see how misinformation spreads, and how you can help stop it — and instead: how you can be a spokesperson for autism and spread the truth!

 

1: MYTH – Autistic people do not have empathy

Probably the number 1 biggest myth about autism is the idea that autistic people are basically psychopaths, and cannot feel or comprehend empathy.  The notion goes, by an autistic’s ‘flat affect’ (where their facial expression is “flat”, without emotion, or they over-exaggerate expressions which seem artificial) indicates they cannot possibly feel any real emotions, let alone understand empathy.  Another reported tangent to this myth is that an autistic person’s tendency is to not show caring behaviours, and this further suggests autistics lack empathy. However, this couldn’t be further from the truth.

Truth: Autistics experience empathy deeply, often to the point of exhaustion and overwhelm.  Autistic people withdraw from emotion as a means to cope with the hypersenstivity of other’s emotions. Sponging in the feelings of others is commonplace for an autistic and they often find themselves introjecting pain, sadness and anger.

Origin of the myth: Early (misinformed) research into autism! Kanner (1943) worked with children and defined them as being autistic because they had “psychoses”, were “aloof, distant, retarded”.  In 1978, Rutter expanded that definition to include “unable to make relationships, lacking in empathy, and lacking attachment behaviour”. These conclusions were drawn based on observations only, and derived for the creation of diagnostic criteria.  Since this time, research has advanced and we know that our past understanding of autism was wrong.

 

2: MYTH – Autism is caused by vaccines

Uh-Oh, this is a triggering topic for most autistics. Why? Because this myth has a very strong following of mostly parents… who choose not to vaccinate their children (for things like measles, mumps, rubella, or hepatitis) for fear it will give their children autism! The idea is that autism is so bad, so horrible, you need to avoid it at all costs, is upsetting to autistics. Furthermore, the idea that some parents choose to not vaccinate their children (and instead let them suffer from preventable diseases, like hepatitis) is deeply saddening to us all!

Truth: We do not know what causes autism but it AINT vaccinations. Research evidence suggests a combination of genetics and environmental factors leads to autistic populations.  There also have been MANY studies reporting autism in both in vaccinated and unvaccinated populations, so nothing about vaccinations screams ‘you’re gonna get autism’. This lie needs to stop.  Vaccinations provide long-term, sometimes lifelong protection against preventable diseases.

Origin of the myth: A fraudulent research paper! In 1998, Dr. Andrew Wakefield and 12 co-authors published in The Lancet, based on the cases of 12 patients, which proposed a link between the Measles-Mumps-Rubella vaccination and the development of autism in children. Almost immediately after the journal published the ‘research’, other experts denied the claim, showing their own research to the contrary.  Over the next few years, many children died because parents did not vaccinate their children for fear of causing autism… and then in 2004, a journalist, Brian Deer, published an investigation into Wakefield’s undisclosed financial interests, finding therein that Wakefield had not only lied about the research and lied about taking blood samples from autistic children, but he also paid participants to say vaccinations were linked to autism! Since the 2004 investigation, the editor of The Lancet declared feeling “deceived” and “horrified” at the lies, Andrew Wakefield was been publicly reprimanded and in 2010 lost his license to practice medicine.  Also in 2010, he (along with co-authors Professors John Walker-Smith and Simon Murch) were found guilty of unethical conduct, dishonesty and the abuse of developmental delayed (and autistic) children, by the prominent UK’s General Medical Council. All up, these dudes were fraudulent and were caught out!

 

3: MYTH – Autistic people are retarded

This is a myth this really pisses me off, partly because I very much dislike that term, ‘retard’.  Most autistics have average to very high level IQs, making them on-par (and smarter) than typical populations. Generally though, autistics experience a sort of ‘uneven educational profile’ – which means that they may excel in some areas, and be lacking in others. It’s likely this contributes to the myth, because an autistic person may be brilliant at mathematics, but struggle to choose clothes in the morning.  Arguably, though, the issue here is more of how neurotypicals misunderstand the autistic experience…

Truth: Autism is a neurological disability, not an intellectual disability. Autism causes difficulties in social and emotional communication, and autistics will likely have repetitive behaviours and special interests… but none of this means they lack intelligence.  Yes, autism can present with an intellectual disability, but this is barely 10% of autistics, and even then, the intellectual disability may be marginal, and not very severe. Also, it’s worthy noting that some researchers like Crespi, think autism is correlated with high intelligence!

Origin of the myth: Lack of public knowledge. Okay, so in this case, the myth has come about due to a lack of awareness on autism, with the snippets of known information being largely attributed to research publications about classical (non-verbal/ low IQ) autism and media depictions of autistics as “idiot savants”(1988 film Rain Man; 1997 film Cube), “non-verbal weirdos” (1986 film, The Boy Who Could Fly), or intellectually disabled/ afflicted (2001 film I Am Sam)… Research has, for a very long time, focused on “lower functioning” levels of autism, and that means that what most people know of autism is that we are just that– low functioning, unintelligent, or… ‘stupid’.  But we’re actually a spectrum of intelligences, and certainly — we’re not “retarded”.

As an aside, a film I liked very much was ‘Please Stand By Me’ (2017) – it totally made me cry in parts coz it showed both the brilliant parts of autism and the struggles we face, along with the ideas and thoughts of neurotypicals.

 

4: MYTH – Autism only affects boys

This myth is quickly being dispelled, and I’m actually quite surprised it still has traction. I mean, who is the most well-known autistic person in the world today? Temple Grandin. A woman!

Truth: Autism affects both genders: girls and boys can be autistic. Currently, statistics show the ratio of male-female diagnoses of autism as 4 to 1 (4 men, to 1 female). Autism is diagnosed in more males than females, and this is likely due to the diagnostic criteria seeming to exclude or limit the female experience. Researchers Gould and Ashton-Smith (2011) say that the current diagnostic criteria is too narrow, and it excludes women (more from them, in this research paper). As more research comes to light, and more women come forth declaring their diagnosis, we are beginning to see that autism is not a male disorder; it affects women too.

Origin of the myth: Early (misguided) research into autism. Autism has always been viewed as a male disorder, right back when it was first publicized in the 1940’s by Leo Kanner. Although Hans Asperger declared that autism might be seen in girls after puberty, he focused his research into boys.  Thus, research into/ diagnoses of autism became linked to the abnormal behavioural characteristics of males.  From then until much later, research still focused around boys, and while some researchers tried to introduce female autistic traits, 2002 research by Simon Baron-Cohen into “Autism and Extreme Male Brain Theory” pushed females further out of mind: Autism is a male experience, associated with interests in computers, engineering, science, and technical activities. The female autistic experience is being researched more, and as the years pass, we’re developing a greater understanding of how autistic women struggle and cope with their experience of autism.

 

5: MYTH – Autistic people are savants

Savant syndrome is a condition which exists all on its own.  To be diagnosed with savant syndrome is to be, well, strictly speaking, extremely rare.  Prodigious, or genius savants generally have significant intellectual difficulties or disabilities in combination with a very high degree of ability without formal training, in an area that far exceeds the normal levels of functioning.  Savant abilities are ones that leave you in amazement: rapid and correct calculations, memorizing and correctly reciting all numbers from 600 phone books, perfect artistic or musical ability, drawing of accurate maps, making puzzles picture-side down by only looking at the shapes…

Truth:  Savant ability is profound. It *can* occur in autism, but it is rare. Some autistics can be savants, and some savants can be autistic… but not all autistics are savants! Savants occur 1 in 1-million people, and some research suggests savant symptoms occur 1 in 10 autistic individuals, but remember, even savantism occurs on a spectrum.  I may be gifted in my IQ, and exceptional in some areas, but I’m just “twice-exceptional” – I’m not really a savant… So, remember, while autistics are possible candidates for savantism, not every autistic is a genius savant.

Origin of the myth: Media! Film! TV!  The stereotypification of the “idiot savant” most well-known in media, is the depiction of the autistic man, Raymond, in the 1988 film ‘Rain Man’ (portrayed by Dustin Hoffman).  In this film savant ability is demostrated in the scene with the toothpicks. As they fall to the ground, the character Raymond looks down at them and says: “82, 82, 82… toothpicks”. You quickly find out that Raymond has correctly counted 246 toothpicks on the floor, simply by looking at them. Most people who grew up during the 80s remember ‘Rain Man’ and have a strong association of savant syndrome with autism. Also, in the news, autism is often reported as the lifestyle story/ the amazing savant autistics: see, here, here, here, and here. All these autistics are just WOW in their ability, and they ought to receive praise… but just because these people are savants does not mean all autistics are savants.


 

Okay, so here are a few myths DEBUNKED.  Let me know if you want to hear more!

 

*FYI: Top photo on this post is by PhotoBay, and was chosen to be used here to make a mockery of the ‘puzzle piece’ autism analogy. Call it… dark humour.

Important Definitions

toys letters pay play

Photo by Pixabay

In autism groups, forums and in conversation, you may feel out of your depth pertaining to an alternate use of terminology, slang, acronyms, or phrases.

I’m here to help! 🙂

Here are the most common terms and acronyms, along with their definitions.  I will be adding to this list as I remember more, or am reminded of ones people do not know.

I hope this list can help you navigate the world of autism!


 

 

Popular Terminology used in Autistic Circles

  • Ableism: This is a form of discrimination in favour of able-bodied people.  It is a set of beliefs or practices that devalue and discriminate against people with disabilities or mental-health problems, seeing them as diseased/ dysfunctional/ abnormal, and seeking to ‘fix’ or ‘cure’ them. For example: saying you’re “so sorry” to hear that someone is autistic, is an ableist comment, because being autistic is not something to pity, and hey– it’s not like dying from the Bubonic Plague!
  • Allistic: A ‘neurotypical’ person; a person who is not autistic.
  • Anti-Vaxxer: A person who thinks they know more about medicine and public health than the overwhelming majority of doctors, scientists, immunologists, and every major university and research journal…. Why? Because anti-vaxxers believe vaccinations cause autism.  Which they don’t. By the way. For more info on autism and vaccinations, see my post, “5 Myths of Autism“!
  • Aspie: A person with Asperger’s Syndrome/ High functioning Autism (friendly usage, but ask your autistic which terms they prefer).
  • Aspien: A girl/ woman with Aspergers (friendly usage, but ask your autistic which terms they prefer). The term was popularized by the book, ‘I am Aspien Girl‘ by Tania Marshall, which explores the idea of alternate symptoms of the female autistic.
  • Autie: A person with Autism (friendly usage, but ask your autistic which terms they prefer).
  • Autist: A person with Autism (friendly usage, but ask your autistic which terms they prefer).
  • Autistic Savant: A person with Autism who has extraordinary talents of mind and coordination in one or two areas, which far outstrips any non-autistic person in skill and ability.   The idea that all autistics are savants is misguided. For more info on autism and savants, see my post, “5 Myths of Autism“!
  • Dyspraxia: A movement disorder where a person struggles with coordination and severe clumsiness (that is not otherwise diagnosed by need for glasses), commonly seen in autistics. Often diagnosed in early childhood, this issue presents with difficulty walking, use of fine-motor-skills (such as tying shoelaces, holding pencils, moving Lego blocks, etc). It can also present in non-autistics after physical trauma/ accidents/ illness.
  • Echolalia: A psychiatric condition often seen in autism, where a person repeats the phrases and words they have heard, repeating them back to the person/ object who made them.
  • Flat affect: A person who exhibits a lack of emotional expression. This is commonly seen in photos where the same facial expression is used across all emotive situations. Medical practitioners and researcher refer to this a lot, but in autistic adults, we’ve generally learned how to smile, and how to move our face around to show emotions, so it’s not always a definitive way to describe autistics.
  • Identity-First Language: The idea behind identity-first is to emphasize ownership of Self Identity and a person’s disability is part of that. This language is most often used by autistics themselves: “I am an autistic person”. Autistics (and other disability groups) tend to prefer identity-first language as they feel it reflects who they are– they cannot be without a disability, so why call them “a person with“?
  • Lived Experience: When a person has experienced life with an affliction, disability, or identity.  This term describes the first-hand accounts and impressions of living as a member of a minority or oppressed group. ie: ‘lived experience of autism’ = an autistic person’s experience of life with autism.
  • Meltdown: A meltdown is essentially a complete loss of control over emotional regulation and behaviour.  It is an autistic’s response to overwhelm, which often is seen as an explosion of emotion, or an implosion (or sometimes both). When overwhelmed, we melt down to a childish state. See my blog post, “Meltdown vs Shutdown vs Tantrum” for more info.
  • Mind Blindness: A term popularized by researcher, Simon Baron-Cohen, to describe how autistics struggle to develop an awareness of what is in the mind of another human. I reflect though, that this ought be hard for ANY person, for if you assume to know what another thinks, are you not at risk of patronizing them or not being kind?
  • Person-First Language: The idea behind person-first is to emphasize the person, not the disability. This type of language is often used by medical practitioners, academics and researchers. They say, “That is a person with autism”. Autistics generally dislike this terminology as it dissociates the person from their identity.
  • Rain Man: In 1988, a film “Rain Man” depicted the relationship between a man estranged from his autistic brother, Raymond. When Raymond tries to speak his own name, he pronounces it as ‘Ray-man’, so his brother starts to call him Rain Man.  While this was a great film and it won loads of film awards, the portrayal of autism in the film has solidified this idea that ‘all autistics are savants’ and ‘all autistics have intellectual impairments’, which of course isn’t true.  In autistic circles, “Rain Man” is used as an example to prove these points, AND it is sometimes used to describe how the media/ others misunderstand autism– i.e: “I am not Rain Man”.
  • Refrigerator Mothers: A term coined in the late 1940’s to describe parents of autistic children.  It was a complete misnomer, but one researcher thought cold parenting (a lack of affection) caused autism in children. Completely untrue. By the way. This was a really great blow to the welfare of autistics and parents with autistic kids, because it made parents with autistic kids (or those suspecting autism in their children) not want to help their children for fear of being labelled bad parents, and losing their children over being accused of neglect and alike.
  • Shutdown: Not to be confused with meltdowns… Shutdowns are when it all gets too much, and autistics will go non-verbal.  They may hide away in a small dark space, close their eyes, block up their ears, and just be silent.  Shutdown is a coping response to overwhelm.  See my blog post, “Meltdown vs Shutdown vs Tantrum” for more info.
  • Temple Grandin: A well-known autistic woman, who was one of the first people to speak publicly about her lived experience of autism.  She is a professor (PhD) in animal science, and lives in USA.
  • Theory of Mind: A term popularized by the researcher, Stephen Edelson, to describe how autistics struggle to understand that other people have their own plans, thoughts, and points of view.  Theory of Mind refers to these difficulties and an autistic’s challenge in interpreting other people’s beliefs, attitudes, and emotions.

 


 

Popular Acronyms used in Autistic Circles

  • 2E/ 2X/ Twice-Exceptional: Persons who both gifted (IQ) and have a learning disability, mood disorder, behavioral issue, or neurological diversity (i.e. autism).
  • ABA/ ABA Therapy: Applied Behavior Analysis (a form of therapy seen as offensive to autistics, as it promotes “curing” autistic behaviours and mannerisms through classical conditioning and a rewards system – Receiving ABA therapy for autism during childhood years has been shown to increase PTSD in adults… YIKES. Sooo, I think that’s pretty good evidence it sucks for autistics).
  • ADOS: Autism Diagnostic Observation Scale (used in diagnoses).
  • ADHD: Attention Deficit Hyperactivity Disorder.  This is a neurological divergence disorder, where a person experiences an ongoing pattern of inattention and/or hyperactivity-impulsivity that interferes with their daily living.
  • ASD: Autism Spectrum Disorder. (you can also read my blogs for more information, on ‘diagnostic criteria‘, or ‘what is autism‘).
  • AS: Asperger’s Syndrome (Asperger’s is Level 1, “high functioning” Autism. Though Asperger’s is now classified as part of Autism under the DSM, some people still use AS to refer to Asperger’s).
  • BCBA: Board Certified Behavior Analysis (the graduate-level qualification you need to become an ABA douchebag).
  • BP/ BPD: Bipolar Disorder.  This is a mood disorder, where a person experiences uncontrollable and severe high and low moods, changes in sleep patterns, energy, thinking, and behavior.
  • CARS: Childhood Autism Rating Scale (used in diagnoses).
  • CWA: Children with Autism (most often used by academics and researchers).
  • DSM: Diagnostic Statistical Manual (current version is DSM-V, DSM-5).
  • Dx: Diagnostic, Diagnosed.
  • EI: Early Intervention.
  • EQ: Emotional Quotient (Emotional Intelligence, as in the ability to understand the emotions of others, to show empathy, be kind, and regulate emotions).
  • HFA: High Functioning Autism (most autistics hate the use of “high” and “low” to indicate functioning because it denies us the spectrum of functionality).
  • IQ: Intelligence Quotient (used to measure intelligences, per IQ testing).
  • M-Chat: Checklist for Autism in Toddlers (Screening tool used in diagnoses).
  • ND: Neurodiverse/ Neurodivergent (a person with a neurological diversity, such as someone with Autism, ADHD, dyslexia, dyscalculia, dysgraphia, Tourettes, etc).
  • NT: Neurotypical (a person who is not autistic/ a person without Autism).
  • NPD: Narcissistic Personality Disorder. This is a personality disorder, where a person has a long-term history of being grandiose, with an excessive need for admiration, disregard for others’ feelings, an inability to handle any criticism and a sense of entitlement. (most often Autistics will be referring to their NPD partner or parent, as narcissists tend to gravitate to autistics…).
  • OCD: Obsessive Compulsive Disorder. This is an anxiety disorder, where a person is troubled by recurring unwanted thoughts, images, or impulses, and they use obsessive and repetitive rituals as coping mechanisms.
  • OT: Occupational therapy/ Occupational therapist.
  • PDD NOS: Pervasive Development Disorder Not Otherwise Specified is a diagnosis given when a person does not fully meet the criteria for Autism Spectrum Disorder (ASD), Asperger’s Syndrome, Rett Syndrome or Childhood Disintegrative Disorder, but meets several of the characteristics.
  • PECS: Picture Exchange Communication System (helpful for non-verbal Autistics, working with autistic kids and autistic adults who need extra help to understand).
  • PT: Physical Therapy. Physical Therapist.
  • PTSD: Post Traumatic Stress Disorder (previously named “shell shock”, describing the reactions of soldiers after war). This is a psychological disorder that refers to a group of stress reactions that can develop after witnessing traumatic events.  Things such as war, death, serious injury, sexual violence/ abuse, and/ or threats to our health or psychiatric state can create the space for PTSD. Sufferers experience flashbacks, nightmares, anxiety attacks, depression and uncontrollable thoughts about the event.  Autistics may experience PTSD due to ABA treatments in childhood, NPD parents, toxic past relationships, sexual abuse, and/ or violence.
  • PWA: Parents with autistic children (most often used by academics and researchers).
  • Psych: Psychologist or Psychiatrist.
  • SLP: Speech and Language Pathologist (helpful for diagnosing speech delays and difficulties with words and language processing).
  • SO: Significant Other – ie the person’s partner/ spouse (often used in forums/ chatrooms).
  • SPD: Sensory Processing Disorder. This is a neurological difference, where a person misinterprets and struggles to process everyday sensory information, such as touch, sound and movement.
  • WAIS: Wechsler Adult Intelligence Scale (used in diagnoses)
  • WISC: Wechsler Intelligence Scales for Children (used in diagnoses)

 

6 ways to support an autistic spouse

sunset hands love woman

Photo by Stokpic on Pexels.com

I have had my share of relationships, and over time I have found that being autistic in a relationship can cause a plethora of difficulties.  So instead of outlining all the problems, I thought it’d be nice to list 6 ways you can support your partner if they have autism (and, I’m assuming, you DON’T).

The list is not in any particular order– so what I’ve labeled 6, and what I’ve labelled 1 does not differ in terms of importance or helpfulness.

Please note, this list comes from the female autistic perspective. I hope it helps.

 

1. Respect: Assume competence

Yes, I am autistic… but that does not mean I am incapable of doing things for myself, or of communicating with others.  Autistics have a range of issues interacting with people, but hey– everyone has their problems! Many of us live independently, have jobs, have friends and do our own shopping.  Some of us have carers who help us achieve tasks, but even then, know that we are capable.

Autism is a spectrum, so we may have a classification/ diagnosis of “high functioning” or “low functioning” yet our difficulties vary in every single way you might think of.  We may totally excel in some areas and struggle in others.  We might be fabulous organizers, but have problems with self-care and hygiene. Or we may be very intellectual and succeed at work and school, but have overwhelming sensory issues. It’s all a spectrum. It’s like a spectrum within a spectrum.

What we need from our partner is respect and patience.  Get to know our triggers by asking us, or observing and then clarifying these with us: “You are so bright, babe, but I notice you get really overwhelmed by loud noises and changes in plans. Is that right?” — yes!  Now, you can help us by assuming we already know how to fix our problems and not try to fix us, or tell us how to do it “the right way”. You can support your autistic partner by letting them try to do it their own way, asking them how they manage and helping them enact that plan.  If your partner is struggling, ask them: “Would you like help with this?”, and we’ll tell you if we need it.

 

2. Patience: Give us time to process change

When we have been dating for a while, we’ll probably start making plans or decisions together.  Whether big decisions (like moving in together) or small decisions (like choosing a menu item) or setting plans (doing something together), autistics may need a bit more time to think everything through.  See, when plans change, or things involve change, we will need some time to process.  Transitions/ change can be hard for us, and so we need your patience. I’d say this is an executive functioning experience, where our brain just needs MORE TIME to consider all the options and implications of the change.

Changing Plans:  This is hard because it means all the ideas and thoughts we had focused on to create that plan are now different.  Sometimes we can be fine with change, but other times it can be really emotional for us. We may need to “de-stress” or do something active, to allow that change in plans rush over us so we can let it go, and be happier.

Decisions that lead to Change: Autistics can get overloaded with information or ideas about the future, because for us transitions are difficult.  A change in lifestyle is a huge change to our way of doing things. Decisions like this can agitate us, and we can get emotional. So, let us ask you the 100 questions we need to feel secure, and let us think longer about it all.

Please, please do not get down about having issues with your autistic partner when change is involved.  Just be patient with us. Do not be disheartened. If we love and care for each other, everything will work out.

 

3. Clarity: Help us understand what you meant

We really do want to understand you, but sometimes the words you use baffle us.  Sometimes the jokes you tell confuse us.  Sometimes we do not see that you are using sarcasm.  A lot of things will just go over our heads. But we want to communicate with you; we want to understand. Please help us understand you.

A way you can help us understand is to check-in. We will definitely ask you what you mean if it’s confusing, but you can also help us by following up a difficult phrase by saying, “Do you understand?”.  Yes, this can be patronizing, but if you know us (as you should in a relationship!), you’ll also know our specific difficulties.  Or, hey: you can ask us, “What sorts of phrases or instructions do you find hard to understand?” — we’ll tell you, and then your checking in will be super!

You can also use more visual cues, like drawing us a picture (yep, with a pencil!) or to exaggerate your facial expressions.  If you’re joking, make your face really smiley. You can also try using your hands to show us what you mean, or demonstrate an activity for us first, before giving us the verbal instructions.

I know it can be frustrating when you’re just trying to talk to your partner and it’s as if you need to repeat yourself several times, but as with any communication, it’s a 2-way street.  We are trying to understand you, and we really want to.  You are trying to understand us, and you really want to.  Let’s work together to communicate well!

 

4. Freedom: Let us have SPACE!

Do not suffocate me! I am not your puppy or your constant attention giver. I am not your reason for living. I am not your “everything”. I am not your personal life planner.  In fact, most autistics will fluctuate between being distant and being crazy affectionate; we live in extremes of black-white, and usually this is the dial where you’ll experience one or the other: distant OR crazy affectionate.

If we totally get affectionate, it’ll be maddening flood of LOVE… and then that flood will suddenly stop and we *will* pull away.  If this happens, please let us.  We’re not leaving you, or breaking up, or being indignant. We just need space.  If you ask us every day for your attention, we’ll become really agitated and unhappy.  We probably won’t tell you this: we’ll just feel the feelings and get lost in that overwhelm of being suffocated.

Freedom is so important to us.  I think this is because many autistics grew up with overbearing people who looked down on us, and those who demeaned us and our ability to do simple things.  Sure, we’re autistic… but that doesn’t mean we’re invalids! We think differently and do things differently, but we’re not dysfunctional or unable to live. Please, please give us space.

Help your autistic partner by encouraging them to take time for themselves.  Perhaps you might encourage them to do more of their special interest? If you’re living together, remind them to do their own activities, and have time without you around.  If you’re dating, do not organize lots of days in a row of dating, and again– remind your partner to self-care, and self-focus. Your relationship with be so much better for it.

 

5. Acceptance: Recognize our need to “STIM”

When I get overwhelmed, anxious or unsettled, I need to “stim”.  Stimming is a term which means ‘to stimulate senses’, and in medical jargon, it refers to partaking in repetitive stereotyped behaviours, like hand flapping, rocking/ swaying, knocking/ tapping, chewing, making sounds, touching/ squeezing, or fiddling.  For autistics this sort of activity actually calms us down, because it involves a very grounded  and experiential “doing” with our body.  All that pent us energy and emotion we feel gets sort of stuck inside us, and when we stim, it releases it.

I know, you might think it’s weird to stim, or that it looks like we’re bored or acting childish.  I know you might be disturbed about what others think when we stim… but it’s as important to us as sleep, eating, or using the bathroom.  Stimming is a necessity for autistics, and allowing us to stim is one of the most loving things you can do.

A way you can support and help your autistic partner is to get to know their preferred stimming objects.  For example, I have a teddy and a blanket which are my go-to’s when I’m sad or nervous.  When I am frustrated or agitated, I like to chew. I have a range of chewy toys and necklaces that help.  When I feel overwhelmed, I sway and rock, and sometimes bang myself against things (which can sometimes get destructive). I jiggle and hum when I’m thinking, and it’s more pronounced when I’m trying to find the words for things.  I tap objects in public and count things when I’m anxious. I also tap or rub my fingers together. You can help your partner by noticing their emotional states and either suggesting or retrieving their stim object, or just allowing them to do so without interference.  It’s also really nice when we’re out and you know that we don’t have our stim objects, to just have you squeeze our hand or let us know verbally: “everything is going to be okay”.

 

6. Kindness: Do not force us out of our comfort zones

Okay, now I want to say straight up that it’s okay to ask us to try new things, or give something a go… and if something is truly destructive in our lives, please let us know or support us to get help to change this…. but when I say “comfort zones”, what I mean is the routines, coping mechanisms, avoidance of certain foods, etc that your partner has established on their own.  These are the things that your autistic spouse has figured out work for them.  By forcing us to change the way we operate to do it “the right way” or “the normal way” (as you might deem it) is incredibly unkind and it also creates a whole range of discomfort in us.

Autistics set plans and routines and systems to protect themselves, and we often do mightily well as designing these intricate structures to solve our daily problems.

We DO NOT want to be “taught” how to be less autistic, or to behave in a manner you think is more normal.  The only time I think you can step in to “change” us, is if we’re doing something destructive, like self-harm stimming or poor self-care.  And in these cases, tread carefully.  Please do not tell us we’re being childish or wrong or bad.  Just offer an alternate idea on how to act, give us access to resources, or ask us to talk to our psychologist about our behaviours. For example: “Darling, I’ve noticed that whenever you’re stressed you hit your head against a wall.  I worry about how that makes you feel afterwards. I know you get those headaches. I get it that when you’re overwhelmed, you find that head banging calming, but I wonder if another activity might feel better for you. Perhaps you can look at some ideas with your therapist?” – that’s so loving!

Please give us kindness and let us be ourselves.  We do not want to be a carbon copy of what “normal” is perceived to be. Our systems work for us, so let us have our systems.

 


I hope that helps! Leave me some comments if you need more tips or just want to reflect on my post 🙂

Communication and Understanding

Fill your paper with the breathings of your heart. — William Wordsworth

nature sky summer spring

Photo by Skitterphoto on Pexels.com

 

I am listening to what you’ve just said; I am are paying attention; I am trying to communicate the “right” way.

I am trying so hard; but communication is difficult for me. Let me try to outline some of the difficulties I face…. and as I write these, may it be noted that my experience is simply that: mine.  Not all autistics are alike.  Also, take note that while I say these things are challenging for me, they are not life-threatening insurmountable issues.  I have good relationships with others: friends, colleagues… I can communicate with others and I enjoy chats and connections.  I live independently and am not “plagued” by these issues.  But they are still present.  I still experience difficulties.  I am not an invalid; but I so have some difficulty.

 

Conversations.

Something I struggle with is the management and flow of a balanced conversation. As a child, I had so many issues with conversations, and all my behaviours were extremes; now I *think* I’ve improved dramatically… In conversation, I struggle these main issues:

  • Turn-taking: Wiki defines this as “a type of organization in conversation and discourse where participants speak one at a time in alternating turns”. While I (as an adult) understand the concept of turn-taking, and I know that you need to wait until one person has finished their sentence or thought before speaking, and that we need to listen to understand (not just to reply), I still have trouble knowing when I am supposed to reply. If it’s an interview type experience, I realize when the question stops, I’m meant to answer. But in a social conversation, I am told by a couple of my non-autistic friends that I interrupt them, have monologues, and give too much information ALL THE TIME. I don’t think I do that. But I guess I do? My issue is this: 1) How am I supposed to listen to your thoughts, process what you mean, and contribute in a thoughtful manner, while also continuing to listen to your next sentence, and your next sentence, and your next sentence? 2) How am I supposed to remember my comment while you talk? 3) When am I supposed-to or allowed-to ‘jump in’ or take my turn, with my comment? For me, I don’t have definitive answers to any of these 3 questions. If I am trying to do point 1, I either forget my comment, forget the meaning and context of the topic we’re discussing, or I forget what you’ve just said. If I am trying to to do point 2, I cannot hold my comment and understand what you’re saying at the same time. If I am trying to do point 3, I often end up interrupting because I can’t read the flow of the conversation.

That being said, I love conversations that flow.. and I CAN have them.   I have amazing, flowing, fun and interesting conversations with my autistic friends.  We jump around, come back to the point, jump over there, come back to the point, jump over there, and there, and there, and back… One person talks and talks and I listen and listen.  Then I talk and talk and they listen. We build upon our thoughts and ideas, and we develop a bond in conversation. It’s invigorating.

Also, when I have therapeutic conversations with clients, turn-taking is easy for me. It involves allowing silence, holding the balance between the client talking, and me calmly adding a challenge or remark. The focus of therapeutic conversations is client growth; it’s never about me. I find the rules of therapeutic conversations very clear. But, not so with social chats that I have with neurotypicals.

Anti-Bullying Alliance, UK

  • Banter: I’m not sure where to start with this one! I find banter very difficult to do right. The Oxford Dictionary defines banter as “the playful and friendly exchange of teasing remarks”. In Australia, banter is seen as a common way to make friends. Um… What now? You want me to tease you, in a friendly way? To me, teasing is that horrible nasty unkind and frightful expression of words and actions made to demean and hurt the other party. To me, teasing is not nice. So how am I supposed to tease in a nice way? What is allowed? What is not allowed? How do I know if the other person experiences my teasing as friendly? I have tried banter, and often I am told that I went too far, or said something inappropriate, or was hurtful, unkind, or otherwise WRONG. Another thing I am told I do in banter is that I do not laugh along with everyone when they are picking on me. Well, banter means that people can say unkind things about me, then smile, and then say it meant nothing? In psychotherapy, in a therapeutic conversation, a teasing word carries weight — there is no such thing as ‘playful teasing’; there’s just irritations expressed covertly.

Starecat.com

  • Sarcasm and Jokes: I love being sarcastic and making situational jokes, witty quips, or drawing amusing comparisons between things…. but if you do it, I’ll probably be lost. If we’ve been friends for over 5 years, I’ll probably be able to read you… but anything less, and you’ll probably mystify me! I have been advised that my autism makes it hard for me to understand the thoughts and feelings of others, and that my autism creates information-processing issues for me, so I cannot identify certain parts of language, and its subtleties (Yep, flirting was always hard for me!). I wish I could know when you are being sarcastic or innuendo-y. Generally, I will not clue into your sarcasm unless you specifically say, “I’m being sarcastic” or “just joking”. Generally, I will not understand your innuendo unless you’re specifically referencing a previous time we used that analogy, or unless you add naughty face emojis, or say something like, “boom-chicka-wow-wow” after. In terms of formal jokes, I suck at these. I often remember the punch line, but not the joke story… or I remember something funny but cannot explain it clearly. Another thing I struggle with is the understanding of YOUR jokes. I often ask for clarification, to figure out the reasons why you may think something is funny…. and even then I still may not understand the joke. Sorry, I know this sucks. I hate it. I wish I could understand your jokes, especially seeing you laugh so hard over things.

Peak Performance Centre, Mindmaps

Ordering Ideas.

I think backwards, or to say that another way: I think from the bottom-up. This is a classic part of autism. The typical (non-autistic) approach is to start with the large categories and expand into the smaller parts. That means you build a big picture first, and then fill in the details, like this:

  • “Cutlery” (concept), and from there you can add “knife, fork, spoon”. These are all types of cutlery.
  • “Computer” (concept), and from there you can add “Apple, Dell, Asus, PC”. These are all types of computers.
  • “Doing good for humanity” (concept), and from there you can add “sustainability, be kind to each other, make peace, recycle, donate to charity”. These are all ways you could do good for humanity.

But I don’t see the world in that kind of order. Instead, I start with the details, and then move out. I view the world similar to an AI trying to identify objects.

I start with the details, and then move out.

A demonstrative example is this: When I see something walking towards me and you say, “that it is a cat”, I see something with stripes, short hair, has a certain gait, and is small. Now I think of a cat as a thing which has stripes, short hair, has a certain gait, and is small. But, tomorrow if I see another thing which is black, long haired, and is small, I won’t immediately assume it’s a cat unless you tell me it is. If you tell me this black thing is also a cat, I now can create a category, but still it’s not a complete category with immediately applicable objects and rules for categorization. If I see another fuzzy creature of similar constructs, I may not be able to correctly identify it as a cat. To you in all of this, the catness of a cat is obvious. To me, it is not. Now, while this is a basic example and one that pertains more to the experience of being an autistic child, the overall gist is that I see details first. Over time, using more examples, more experience, more clarifications, I can create the concept of “cat”… but I do not immediately see “cat”.

A more “adult” example is understanding how mechanisms work. Just because I can untie a shoelace, unclasp a sleeping bag, and undo a bike helmet, and untether a rope, does not mean I can identify or understand how to operate other clasps. Yeh, I’m intelligent, but my brain doesn’t immediately process things in categories and similar concepts in this way. My brain doesn’t order things like yours does, so I get lost. It will take me many, many, many, many, many times to develop a category, and even then, when the category is broad (like mechanisms) I may still need help learning how to identify and work with this item.

Neither of us is “right” or “wrong”; we just think differently.

This issue of backwards/ bottom-up approach also relates to how I acquire skills. Maybe you have shown me how to use the DVR player, but that skill does not immediately and automatically transfer into my understanding of how to use an XBOX, or to the notion of selecting items on a screen, or to using remotes in general, or how to remember menu titles and categories. For you, this will be automatic learning crossing multiple platforms. For me, it’s a long process… and a slow one at that. I will look at each new item and each new activity with complete wonder, trying to figure it out.

Again, let it be noted, I am not stupid. I just don’t think like you do. I think bottom-up. You think top-down. Neither of us is “right” or “wrong”; we just think differently.

Processing Information.

Another thing I find really challenging is processing information. While it is definitive that autism causes an information processing disorder in the affected individual, I also have dyslexia issues. I reckon you non-autistics and those without learning difficulties probably don’t really understand what this actually looks like/ manifests as… So, here are a few things I experience that are related to my processing issues; things I find deeply challenging:

  • Sensory difficulties: Part of processing information for me includes the processing of sensory data. Sensory processing involves taking in information from the surrounding environment through touch, smell, sound, vision, taste, movement, and gravity. I struggle with the processing and interpretation of these sensations in my environment. There’s no wrong with my ears, eyes, skin, or thyroid; my experience is just… I dunno “autistic”? I was born this way.

Sensations, by Kathleen Helm

Essentially for me, everything sits in quite intense extremes, with only a few things in pleasant spectrums. I love colour and see all the gradients of green in a tree; I love texture and see all the groves in a surface; I enjoy touching hedges to feel the textures against my fingertips, or touching blankets and materials to explore softness and pressure…. But conversely, I find the sun BLINDING — like vampire-level blinding. Even when the sun is obscured my clouds, I find it overwhelmingly bright. Hot showers almost always feel FREEZING cold and I get goosebumps, as if my body has no idea what temperature it is. I find a passing truck extremely loud, like it hurts my ears. Or a ticking clock somewhere at night, ticks like a huge drum echoing in my head. Or even hand-dryers in bathrooms — those are LOUD!! I find perfume on ladies or someone’s bad breath TOXIC to my nose, so strong and pungent that I can’t breathe. These are only a few things, but you get the idea. The sensory information coming into my brain is like a spinal-tap 11. It’s a full intense experience set to 100%. Now, I understand in typical non-autistic brains, “filters” exist which stop the extremities of a sensory experience. But I don’t have filters, because I have autism. What I do have is coping mechanisms and outright lying. I cope by wearing sunglasses, blocking my ears, or leaving the location of the smells. I lie by saying I’m not bothered by touch, or I lie by acting like the sun is not blinding me on a cloudy day, or I lie by pretending I feel no pain from loud noises or from intense sensations. And the reason I lie is to appear normal to all of you. It’s not easy.

  • I walk into things: Part of my sensory experience and my processing difficulties manifest as clumsiness. As a kid, it was sort of manageable, because people forgive you… but now being an adult, it is embarrassing to walk into objects, trip over the (flat) floor, to misjudge the hole of a doorway (and whack my shoulder into it), or to move my hand innocently and knock a cup or -whatever- off the table. When I stand up, I feel unbalanced most of time, as if my feet are not large enough to support my giant body, and it often hurts to stand upright. I see objects fine; I have beyond perfect vision. The problem lies in how my brain perceives my body in space. It’s weird. And I live in anxiety that others will also knock things off the table when they’re talking, with hands waving about. For example, I have to constantly remind myself that my partner isn’t autistic, so they won’t knock things over… but I’m always on guard to catch falling items!!

My brain is trying to keep up, but it’s exhausting! (pic: SlowLearnersPod)

  • Slow thinking time: I take much longer to “get” something, and much longer to process what is being said to me. I find it easier to learn by demonstration where I can actively participate in the “doing” of the activity, along with visual cues. Recently a loved one showed me how to use a staple gun. At first the stapler scared and confused me, but my loved one demonstrated the use of the item and let me try it out under their supervision. This activity helped solidify my understanding of how to use the staple gun and reduced my fear and confusion around its use. I also find written materials can assist me and help me understand what is truly being said, but I thrive on the doing of the activity. While this may sound completely learning-styles related, my point is that my information processing time is still slower than yours.

Some things (like visual learning) help, but on average, it takes me ages to learn something because I need to understand every facet of it to learn it. I tend to ask questions to learn; every question possible. See, my brain processes things slowly and methodically, creating full intricate structures of hierarchy determining the place of an object or concept. There are times when I may look at you with a blank stare when you share something with me, or when you give me instructions, but that’s not me being stupid or not listening/ hearing you. What’s happening to me is a processing of the information. I am trying to link together the ideas from what you’re saying to what I know, and make sense of these concepts in the current context. Other times, I may immediately say, “I’m confused” or “It doesn’t work” or “I don’t know”. This usually will irritate you non-autistics. All you see is the outcome, not my intensive desire to process and understand the information, nor the suffering I experience in the slowness of my processing speed. To you, learning and generalizing tends to happen quickly and (most probably) unconsciously/ automatically. To me, it is a slow process.

One good thing though — it may take me longer to learn and to understand, but once I have learned something, it enters my deep long-term memory, and then I will never forget it.

  • Losing my words: Sometimes when I talk, and sometimes when I write, I lose words. *SOMETIMES* This happens two-fold. 1) I can sporadically completely forget the meaning of words, as if that word was something I have never known. This can manifest as asking you to tell me what ‘table’ means, or with me trying to explain something, giving you only its parts (i.e. “it has four legs, is made of wood usually, flat surface, you eat dinners on it?”); 2) I can say something when talking aloud and unknowingly omit words from my spoken sentence. So, I think I’m saying, ‘Let’s go out tonight for dinner. Maybe to the city?’ and I actually say: “Out tonight to the city?”. It’s not until I get feedback and considerable discussion from the person I am speaking to until I start to understand that what I thought I said and what I said wasn’t the same thing. Losing words is part of my autism. I think it’s called auditory processing disorder. Essentially it’s a brain-related difficulty in processing sound. There’s nothing wrong with my ears! I just sometimes lose words because brain is struggling to gather and classify all the information that I hear.
  • I see in pictures. I’m pretty sure this is a dyslexia thing, but I have read that some autistics also experience this too. I see my world in pictures, and I want to communicate in pictures. I know, you may look around you and think you see in pictures too, but what I mean is: I find words and numbers just weird squiggles without any real inherent meaning. A picture of a tree means more to me than the word, “tree”. I have learned to use words, but because my primary comfort is pictures, I sometimes lose the words or cannot find a word because I can only access a picture in my mind. I also find I can struggle with meaning of things you say to me, because I’m trying to find associated pictures. I do this especially when the stuff you’re telling me is new or if you’re giving me instructions.

If you want to help me understand something, use visual cues. Like, draw a picture of it, or show extreme emotions in your face, or EXXX-AAA–GGGERR-RATE your words.  If you mumble your response or just say something over and over the same way, I’m not going to suddenly understand.  Paint a picture for me– literally! 🙂

Spoken words can be confusing (pic: Nessy.com)

  • No idea what you mean: My catch phrase should be, “What?!” or “Huh”, because I say it a lot when in conversations. It’s not that my ears don’t work, or that I am not listening, or that I am ignoring you. What’s happening is that the information is not coming through in my brain in a correct fashion. It’s not you; and it’s not really me… it’s my brain. I can’t change this. It’s my brain! So, not always, but sometimes, you can be talking to me, and the way my brain processes that information appears to me as if you’re either speaking gibberish, or that you are saying something which you are not. I can hear a sentence you’ve said with key words missing (you say, “Don’t put the spoon in the sink” —and I hear ‘Put the spoon in the sink’), or I can hear it as if you are saying a jumbled sentence (Spoon in the put don’t sink). If the sentence does not make sense, I will question you about it. While that sounds easy to deal with, sometimes it can cause big problems. Like, there’s a huge difference between DON’T do something, and DO it. If a word is missing and the sentence still sounds normal (like “Put the spoon in the sink”), I’ll just do that (i.e. put it in the sink). But when I act on what sequence of words my brain translates your words into, then what usually ensues is the other person saying that I am not listening or that I’m acting out. I’m not a bad person, or a distracted person, or even a selfish person. I am simply acting based on what my brain is letting me hear. I cannot control what my brain lets me hear. It’s frustrating, but its my brain! I also know that I cannot live my whole life questioning every single thing said to me, so I must believe that I am hearing some things correctly… or you’ll go nuts, and so will I!

As before, if you want to help me with this: to hear things correctly, then paint a picture for me. Show me.  Illustrate what you mean is something other than words.

  • Following instructions: Similar to losing words, or not knowing what you mean, I struggle with following VERBAL instructions. There’s something about hearing instructions that confuses me. Even simple basic spoken instructions can confuse me. My autistic brain does not let me hold in mind multiple steps of a greater task. If I have it written down, then no problem; I can read the steps and perform them as instructed. But if you say it to me, then I can’t do it. It sucks, but my brain won’t let me retain that information. For example, if you wanted me to wash the clothes and you said, “pick up all the clothes on the floor, take the basket to the laundry, detergent is in the cupboard on the left, you know the one next to the towels, then wash everything but the socks” then I may get to the laundry and totally forget the rest of the instructions. I’ll come back to you and say, “I can’t remember what I was meant to do” or “I’m confused”, and that probably will irritate you. It’s not that I can’t follow instructions, or that I’m not listening/ hearing, or that I’m trying to inconvenience you. It’s simply that my autistic brain isn’t allowing me to process this information in this way. Similarly, had you said a shorter instruction, “wash the clothes, detergent is in the cupboard on the left”, I may still get confused. I can’t help this. My brain makes it really difficult to process instructions, especially when verbal/ spoken-word. My coping mechanism is to write down steps, make lists, stick lists on the wall, or to repeat the steps you just gave me back to you. I know this probably annoys you. But I am trying.

I am pretty great at writing, but reading sucks (pic: Times)

  • Reading — OMG, reading: You may have noticed by now that I’m pretty good at writing. I am also reasonable at reading. I write ‘OMG, reading’, because reading for me is not exactly a fun activity. I know most of you, even some autistics, love to read. But for me, reading is hard. It has always been extremely hard. As such, I rarely read “for fun”. Reading words for me, is like seeing a page of scribbles and having to consciously remind myself that I can actually understand these symbols; that these symbols have inherent meanings. Yet, I am reasonably good at reading and writing because if I misunderstand or misread something, I can re-read it. Or re-write it! In fact, I re-read my work over and over and over again. This is why I am great at editing. I also spent considerable time in my youth developing my observation and detail-focus skills to hone my writing skills. I realized I needed a way to communicate effectively, and I figured out that I could make writing my forte! So, because I am used to misunderstanding and misreading things, I am alerted by incorrect shapes to words, bad spelling, poor grammar, missing words or letters, and where meaning is lost. I also read out loud. When I read out loud, I hear the words in my head and I hear what is wrong, while seeing (reading) what is wrong. With conversations in person, I cannot see the words, or re-read the words, or reflect on meaning… because the spoken word is said and then it just disappears. So, reading is hard for me, but I much prefer it to hearing speech as I find it easier to convey meaning and thought when I have a chance to confirm the particulars.
  • Obviousness: This is something I want to include in this section because I often hear from angry non-autistics claiming that my lack of knowledge or understanding on a topic seems strange because the thing they have described to me is “so obvious” or “so logical” or “so clear”. Um, well, I think nothing should ever be considered “obvious”. For something to be inherently obvious would mean that every single person in the world would understand it, and I reckon if “obviousness” was true in our world that we probably would never have disagreements or wars. I get it — you’re frustrated that I’m not doing what you said, or that I am not understanding what you said… And I know in many situations, you will think something is inherently obvious, and that perhaps most of the population will also think it is obvious, logical and clear… but it is not “obvious” to me. I’m pretty sure my difficulties around understanding your “obvious” statement or instruction is linked to my information-processing disorder, coz I’ve tried to understand. I want to understand you, I desire to do so. I’ve focused on you, I’ve listened to you, and I may have even taken notes… I am intelligent, I am learn’ed, and I can do and achieve so much, so if I can’t understand you when it’s “obvious”, there must be something else at play!

I can’t identify all these emojis. Can you? (pic: Freepic)

Expression.

Something else I find a challenge is expression. I know this is a big part of communication. I have quite a bit of difficulty reading others in a non-therapeutic setting. In therapy, I shelf all my own experiences and feelings, so my focus is on the client. I see the client, I listen to the client, I connect with the client. The client takes all of my attention. This way, there is significantly minimized chance of misinterpretation, mishearing, or an incorrect ‘reading’ of the client’s emotional state. Because I am hyper-focused on the client, I am in their world with them, working with them… I can see group dynamics and individual emotional states in the therapy room. But when I am in a social setting, expressing my feelings and thoughts in a balanced equal manner, where the focus is between the people in the social setting/ not directed solely on one person (i.e. the client in therapy), then I struggle with expression.

  • The “right” emotional face: I was never taught how to show emotions, or what they look like. So, while I totally “get” some emotions, like smiling or laughing when happy, others are vague to me. I also have a response of crying when arguably crying is not the best course of action to suit the occasion. Maybe I’m over-analyzing this, but I’ve been told I cry too much, too often, and not for the right reasons. Crying is my natural first response to fear, shame, sadness, frustration, shock, happiness and wonder. I can differentiate which state I’m in at that time, but to everyone else, all they see and hear is my crying. Another thing is my face expressions. I feel my face doing all kinds of things, pulling in different ways, but I have no idea what’s going on there. People will often ask me if I’m okay, or what’s wrong, or what I’m feeling, and then look bewildered at my response. I’m not angry or sad — I’m just being me, with my face!
  • Vocal difference: I think I’m quite expressive in my voice, as I did drama at school and have taken lots of drama courses since. I also sing and have worked to improve my range of vocal expressions. However, I am so often told to lower my volume; the volume at which I speak is apparently often too loud. I talk loudly because I need to hear myself in order to make sure I am hearing it correctly. I guess I could have benefited from some kind of speech therapy as a child, but I never got that.

Pic by Schueller Design

 

  • Look into my eyes: I read recently that you’re supposed to maintain eye-contact when speaking to someone because “we speak with our eyes”. Well, I’m gonna sound super autistic here, but NO, we actually speak with our mouths.

When I make eye-contact with you, this is a learned behaviour. It does not help me hear you or understand you. In fact, during speech and conversations, if I look in your eyes, I actually struggle even more with processing the information given to me.

I’ve also read that people who do not maintain eye-contact during speech have “something to hide” or are lying. Um… That’s not true for me. I just look into your eyes when speaking to you because I have been trained to do so. Yes, like a trained monkey, I perform the behavioural action, but this is not natural for me! When I look at you in your eyes when I talk to you, or you talk to me, I actually struggle even more with processing the information given to me. When I glance away, close my eyes, or turn my ears towards your voice, it’s not me being rude; I’m actually trying to give myself the best chance possible to connect to your words, to hear you without missing anything, and to understand the meaning and context of your speech. I am not the only autistic person who finds this “rule” of having to maintain eye-contact while talking to someone irritating. Many autistics suffer being forced to look at people. Growing up I heard, “Look at me when I’m talking to you!” and “Don’t you dare look away!” Sorry I’m not looking in your eyes right now. I’m actually trying to be respectful by making a concerted effort to truly HEAR you.

Apps 4 Autism Hackathon: Reflections

When autistics get together, something magical happens!

‘Moondance’ by Amorphisss, an amazing artist on deviant art. Go check him out!

So, a couple of years ago, I attended a Hackathon called Apps4Autism, inspirationally brought into existence by the Autism CRC, and sponsored by some lovely peeps at Salesforce and ANZ.

The Hackathon ran for 3 days with its purpose being to design user-validated apps for people on the Autistic spectrum. I had many reflections on the event at the time, and these are some I had right after.

I am re-posting this  coz I think the thoughts I made at that point in time were valuable, and maybe they can help others too.


What is the key issue all Autistics face?

Relationship.

(Yep, that’s correctly spelled).

The primary problem we have is the understanding of “relationship” — it is the relational space between ourselves and objects that poses confusion. Just as a quick aside, in psychology the self is perceived as the subject, and the “other” is denoted as an object. A key priniciple of psychology (whichever technique you ascribe to) states, to attain a deeper connectedness with the world, and a deeper awareness of yourself in the world, you need to first understand your relationship with your self.

First and foremost, Autistics (or, ‘aspies’) are introspective. They look within. Aspies look at their own relational space first, and then they look outside us. Now, herein lies the challenge. When Aspies look within, they see something so deep and so complex; so immense and unbounded that they can’t make sense of it. In my team on the hackathon, one of my fellow Aspies said, “The scope is too big, and that causes the overwhelm”. Nail on the head! When Aspies look within ourselves, they see a myriad of “stuff”. They cannot even begin to label what’s there, because there is so much there. Similar to my post on FOCUS, when Aspies view themselves, they get lost and frustrated.

Autistics are problem-focused. We are constantly seeking solutions.

When you are Autistic, and you are naturally drawn to creating systems and solving problems, consider how it might feel to look at yourself and be lost in there. If you have ever wondered why Autistics tend to get angry/ frustrated/ annoyed, this is good place to start your enquiry! They want to solve the problem of Self. Aspies MUST solve the problem. Then when they look outside themselves at others, they still cannot make sense of it. The problem of understanding others lies in relationship. The problem is in the relational space. And, this issue is magnified by the fact that when we look at others, we do not see a reflection of ourselves. Let me explain using an example-

Different Not Less

In the evening of the final day of the Hackathon, I was honored to join a group (Austistics) for drinks at a pub. Between much chatter and drinking, at one point someone said, “See, we don’t have a problem with socializing! We’re doing it just fine with eachother” — I think that is the key point here. Being Aspie certainly means our main issue is relationship, but moreover, the “problem” lies not in how we communicate per se, but how we are understood by everyone else (those not on the Spectrum).

When we look inside ourselves, it is confusing because the scope of Self is without boundary. But when we look at others, we (more often than not) find ourselves comparing our sense of self and understanding of the world with non-Autistics. We do not see a reflection of ourselves in the world. We see difference, and, at a very young age, that feels like rejection…. but moreover, from a deep reflective sense of how we Autistics understand our world, we see a problem to be solved. And purely using logic here-

If you are 1 and everyone else is 2… it is natural to think 1 is wrong, and 2 is right

If you are 1 and everyone else is 2, and you never meet another 1, and you can’t understand 2, but everyone else understands 2 because they are 2, then it supposes that 1 is not 2, and if 1 cannot be made into 2 by means of altering looks, behaviour, clothing, spoken word, or any other transformation, then it further reinforces that 1 is different from 2. And if 2 rejects 1 for being 1, then it is a natural reaction (and based in science) for 1 to think 1 is wrong and 2 is right.

Therefore I am wrong, and everyone else is right. I am the problem, and the external other is the solution. I need to obtain the other to solve the problem, but I am the problem. How can I be the problem and other the solution? How can I solve my internal struggle of making sense of myself if externally is where the solution lies? How can I make sense of myself if I don’t know where to start because the self is so immense? How can I connect with the other if that other is so immense? And if I am the problem, then maybe removing the problem is the solution?

Our incredible skill of analysis and systems exploration is what makes Aspies so bloody brilliant…. but it also makes most of them quite apathetic, depressed or dismissive especially of themselves and especially when it comes to rationalizing whether social interaction is worth time and effort.

Weird photo taken at Apps4Autism.

When Autistics get together, magic happens

Yes, we are different. We are 1’s!! Amongst each other, we are much more able to build quick and lasting friendships because, if I may swear here, we cut past all the meaningless bullshit. When you finally meet another Autistic person (and, I might add, you have finally got a diagnosis), you feel NORMAL. For the first time ever, when a Autistic meets another Autistic, we have a mirroring of self.

At the Hackathon, I found it so comforting to be surrounded by so many other like-minded people. In my group, we didn’t need to clarify anything (although we would perfect exact synonyms) when we spoke to each other. We didn’t need to read into what might have been said, or was not said but intended (subtle cues of non-Autistics), we didn’t need to expend all that energy on pointless things. That was nice. I also notice that Autistics tend to be the kindest, most loving people. This is not to exclude non-Autistics, because certainly you can be sweet too. I just want to explain how it felt to be ‘mirrored’. I would posit we Autistics are kind because we have felt ostracized whilst analyzing the intricacies of that rejection. We want nothing more than to understand our immense self, and understand the immense other. We want nothing more than connection (like every human does). When we see ourselves reflected back, it is beautiful.

Autistics cut past all the meaningless bullshit.

I often reflect on Fritz Perls, Gestalt clinician (b.1893–1970) who said, “A good therapist doesn’t listen to the content of the bullshit the patient … The real communication is beyond words”. Perls talks about the “spaces between” being the place where communication exists. This is not to say the primary communication is body language, but rather, in reading a ‘typical’ client, you need to ignore the bullshit to actually see the person and see what their issue is. With an Aspie, you don’t have to filter the bullshit, because we already have done than task. Incidentally I love working with other Autistics in my practice because there is less to filter off. If they feel anxious or pissed off, most often they will tell you directly. Instead of the crap, we have EMOTIONS everywhere. But hey, at least that’s authentic. What a waste of energy expending it on the bullshit. Yes, I love you Fritz.

A way forward?

So essentially in this reflection, I wanted to draw attention to a few points from the Autistic perspective — my perspective. I cannot “solve” the problems put forth in all these points, but I think that working together is the way forward. I have gained such amazing insight from working with a psychotherapist (as a client in therapy) and I have gained so much from my own analytical self. I believe quite strongly in the need for solutions- not at all to CURE us (blegh/ AutismSpeaks wankers), but to support Autistics in a greater sense of self understanding…. because understanding the self is the first step to greater awareness and being able to “be” in the world, and be happy as part of it.

It was nice to be “seen”

I did feel quite blessed to have taken part in the Hackathon…. and I want to say a few words about that now. Thank you to the Autism CRC and everyone who helped make the Hackathon possible. It was nice to be “seen”, to be recognized for my experience, for my life, for my ideas and my talent. I have too often felt excluded in those areas. I also want to say thanks for bringing other Autistics together, and giving us space to be ourselves. I have made some wonderful dear friends, and connected with authentic and caring practitioners. I think that’s really special ❤

Twice-Exceptional Autism

For the autistic and gifted individual, life is full of struggles. The biggest challenge is not being autistic or being gifted, but rather being autistic and gifted in a world where autism and giftedness is not “the norm”.
bright bulb clear dark

Photo by Pixabay on Pexels.com

The Majority RULES

It totally sucks, being a minority. No matter what brilliance you have to offer, most often you are left in stigmatization. You’re different, so you’re rejected. We like to tell kids that difference is special and uniqueness matters, but just have a quick look at our world — read the news — and you’ll see, humans still attack each other over difference.

The majority perspective is the “normal” perspective. This is the basis of our modern world: positivist, concrete, systematic, precise, ordered, categorized. While this way of understanding the world has many benefits, it also creates notions of dysfunction (normal vs. abnormal) and behaviours of judgment (acceptance vs. rejection).

If you’re not normal, you’re Wrong.

If you’re not normal, you’re Ostracized.

If you’re not normal, you’re the Minority.

 

A Gifted Minority

What do I mean by gifted? Well, a definition is: ‘individuals whose skills or talents exceed above-average levels of human performance’. Giftedness is usually correlated with IQ scores (130+), but giftedness can also belie artistic brilliance or talent.

I have gifted talent. My IQ is 143, and I’m a polymath… that is — I don’t really find anything difficult to learn or comprehend. I learn very quickly, and while there are subjects I don’t particularly like, I can do them… and I can do them well. As such, I study always, research everything and I just know a lot about a lot of intersecting things!

So, what are the challenges? Well, most significantly, I think the problem is the majority. That is, here you are in a world which is largely populated with people who are less intelligent than you, less capable than you, and less able to comprehend your complex thoughts. As such, any interaction with the majority is… well… difficult.

 

An Autistic Minority

Autism is a neurological divergence in typical development. Some areas of functioning may be inhibited, and other areas enhanced. Every autistic person is different, and they experience their autism differently.

I am autistic. So, my way of understanding the world is atypical. What are my challenges? Well, I have executive functioning issues which makes it difficult (at times) to make decisions, I have dyslexia (though I am hypervigilant to try to notice errors and fix it), I may misunderstand a joke, taking someone literally when they were being metaphorical (or interpret something metaphorically, when they were being literal) — that’s always fun! *sarcasm* Yes, I often feel puzzled about social interaction, I collect plushies, and I need sensory soothing objects to bring me peace when the world seems all too overwhelming.

Usually people don’t SEE my struggle because I have learned to mask it. When I am out in public, I spend a great deal of energy pretending to be normal, to fit in, to give an impression of “belonging”. But you know, it’s tiring. It’s utterly exhausting to pretend.

And sometimes, when I’m out in public, I just can’t pretend anymore and that’s when people do see my struggles. I try VERY hard to make sure no-one ever sees my autism. Why? Because when they see me this way, I am treated as if I am stupid or crazy.

I find this is SO much worse when you’re actually gifted and intelligent but you’re treated (by people who lack intelligence) like you’re the one with the problem!! WTF?!

Being different is really hard…Growing up, I was aware that I was totally different to others, with a reasonably high IQ (which, by the way, relative to my family is quite low), but completely unaware of being autistic. Arguably we all exist in this state of “unawareness” of our divergence from the norm until we encounter the norm! In full disclosure, I was identified (by a professional) as autistic in 2015 and I received my official piece of paper ‘proving it’ in 2017 (diagnosis). My point is, as a child and as a teen, and for a giant chunk of my adult life, I was unaware of my autism. Although I had incredible talent, I knew I was bright and capable, I always felt as though I was defective in some way. I didn’t fit in, I doubted myself, and I suffered quite a lot.Something I have noticed since ‘coming out’ as autistic is the prevalence of stigma and discrimination from others. Yes, I have talked about this before on other forums, but I want to express the importance of how it feels to be on the receiving end of some of this stuff. Hearing these comments (even when directed at other autistics) is upsetting. It is part of the struggle, because, well — I care.

When describing my experience as an autistic —

COMMON RESPONSE: You are wrong. I know better.

  • “No, that’s not autism. You’re just anti-social and rude”
  • “You don’t have any empathy, do you?”
  • “It’s called ‘introverted’ — not autistic”
  • “You’re just not trying hard enough”
  • “You can’t stick to anything. You’re just too scattered. You can’t do anything.”

I probably don’t need to tell you that hearing these things hurt. Not only are people who speak to me demonstrating their complete and utter lack of awareness of autism, but these statements also place my experience and my identity in the realm of “not recognized” and “not worthy”.

Another struggle I experience is that people seem unable to comprehend what I can and can’t do. This is not an issue limited to being gifted and autistic. I’d argue individuals with a variety of disabilities experience this.So often I hear disparaging comments when I am trying to shine, when I have an idea, when I share my abilities, when I talk about theoretical possibilities. In the academic realm, I do have small groups of people who believe in me and who value my unique perspectives. But, alas, in other areas — especially in job seeking — I find people’s small-mindedness ever present.

When describing my gifted ability and my talents—

COMMON RESPONSE: You are wrong. I know better.

  • “You’re lying about what do you can do”
  • “No-one can do all of those things”
  • “You think you are better than everyone else”
  • “You will never be able to do that”
  • “That idea is impossible”
  • “Your knowledge and skills are not transferable”
  • “This is the way it’s always been done — stop trying to change things”
  • “You don’t know what you’re talking about”

Being told these things also hurts me deeply. I have arguments against all these points, but now I just don’t share them. If someone has this position about me, then what we’re seeing here is an impasse. I often reflect, one the reasons I live with a quiet pervasive existential depression is due to the fact that the world is full of suffering, and the act of discrimination and disconnection is a human trait. Humans fear difference — it is a survival mechanism, and it is so strong in many many people. When someone shares their ability, and you can’t do that or you can’t understand that, don’t reject them! Yet, people do this all the time. They make assumptions, they judge, they rule you out, they exclude you… And it hurts!In an interview, I once was told: “You’ve done too many things. It shows you can’t commit to anything”. This person described ME as flaky and lacking focus because I have done so many things, and studied so many areas. He didn’t truly see me. This person refused to see who I am, and instead judged me for who he assumed I was.

Strengths: An Improvement-Focus

Is it a gifted thing or an autistic thing that I get extremely bored when I’m not being intellectually challenged? Who knows! But, it’s true: I need stimulating input all the time. I have a need to continually work to improve things.

Improvement matters. It’s about making things BETTER. I am committed to improving myself, to improving my environment, to improving others, to improving the world. Everything has the potential for growth, and it is something that’s positive.I am excited by the aspect of LEARNING, and I enjoy exploring topics and ideas and developing myself as a rich and full person with knowledge in many arenas. I also believe that you can’t really understand something until you do it, so I try to do activities that reinforce my learning in theory… and that means I’ve done a shit load of things.

See Me, Don’t Diminish Me

I have also been told (in response to explaining my challenges), “that’s not a real problem; everyone faces these struggles in life”, and though I recognize all humans experience challenges and all humans receive judgment at times, the plight of an autistic and/or gifted individual is not the same as “all humans”. Being continually given a label, being told that your ideas are wrong, being told that you are incapable or whatever you have in mind is an impossible task — WOW, that’s a way to kill creativity and punish a human. Are we really so draconian?And my wish is simply to be SEEN. Authentically SEEN.

Artwork by TheJader, DeviantArt

I am capable — just look at what I can do! Just look at my qualifications. Just look at my academic scores. Just look at my experience. Just hear what my teachers think of me. Just listen to my words. Just give me a try. Just believe in me. Just see ME as a person, not as “something flawed”.


In sum, I reflect that being autistic and gifted is hard. It presents conflicting struggles. On the one hand you’re bright, so it should be easy to excel, but on the other hand, you’re restricted by your disability…

Yet, my autism and my giftedness are things I cannot change; these two parts of me that are ME. They are my identity.

Being a minority, I have to fight for everything that I want to do. Yes, I know there are always people worse off than me, and everyone has their own “fight”, but with autism and with giftedness, I am constantly put in situations where I have to prove to the majority that I am capable, that I can do it, that I do matter, that I have something worthwhile to say, and that they should listen. And this is saddening too.

It hurts to be a minority and not be heard. It hurts to be a minority and not truly seen.

With all things, and perhaps this is my nature, I seek to IMPROVE. I want to make things better. I want to grow. I will keep moving forward, keep working on myself, continuing to research topics I find valuable, and perhaps somewhere in that, I will find kindred spirits?