Multitasking damages your brain… seriously

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“Multi-tasking is merely the opportunity to screw up more than one thing at a time” ~Gary W. Keller

Despite this constant barrage of in the corporate world, demanding all workers need to excel in “multitasking” and “able to manage a fast paced environment”, research offers a startling FUCK YOU to it all.

In short: if you multitask, you will give each task less of yourself, and the constant switching hurts your brain long-term by reducing your focus, work quality, attention span, ability to show empathy… and — wait for it — multitasking has also been shown to reduce your IQ.

It seems since the 1990s, researchers have been proving again and again that multi-tasking is actually bad for you. I wonder why the corporate world didn’t get the memo? Sure.  It is true that we autistics struggle with multitasking, but perhaps that’s not a negative after all!  I mean, all this research shows us that all humans have the same problem.  We ALL suffer when we multitask. So why put this big dark cloud over autistics?

 

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FYI – just a few research papers supporting this:

  • Carrier, L. Mark, Larry D. Rosen, Nancy A. Cheever, and Alex F. Lim. “Causes, Effects, and Practicalities of Everyday Multitasking.” Developmental Review 35 (2015): 64-78.
  • Foerde, K., Knowlton, B. J., & Poldrack, R. A. (2006). Modulation of competing memory systems by distraction. Proceedings of the National Academy of Sciences103(31), 11778-11783.
  • Gorman, T. E., & Green, C. S. (2016). Short-term mindfulness intervention reduces the negative attentional effects associated with heavy media multitasking. Scientific reports6, 24542.
  • Hirnstein, M., Larøi, F., & Laloyaux, J. (2018). No sex difference in an everyday multitasking paradigm. Psychological research, 1-11.
  • Janssen, CPGould, SJJLi, SYWBrumby, DRCox, AL(2015) Integrating knowledge of multitasking and interruptions across different perspectives and research methods.International Journal of Human-Computer Studies, 79, 1-5.
  • Kirschner, P. A., & De Bruyckere, P. (2017). The myths of the digital native and the multitasker. Teaching and Teacher Education67, 135-142.
  • Loh, K. K., & Kanai, R. (2014). Higher media multi-tasking activity is associated with smaller gray-matter density in the anterior cingulate cortex. Plos one9(9), e106698.
  • Meyer, D. E., Evans, J. E., Lauber, E. J., Gmeindl, L., Rubinstein, J., Junck, L., & Koeppe, R. A. (1998). The role of dorsolateral prefrontal cortex for executive cognitive processes in task switching. Journal of Cognitive Neuroscience, 10.
  • Mills, K. L., Dumontheil, I., Speekenbrink, M., & Blakemore, S. J. (2015). Multitasking during social interactions in adolescence and early adulthood. Royal Society open science2(11), 150117.
  • Rosen, C. (2008). The myth of multitasking. The New Atlantis, (20), 105-110.
  • Rottapel, M. (2017). Pardon the interruption: An examination of the antecedents and outcomes of multitasking in the workplace (Doctoral dissertation, The Claremont Graduate University).
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Autism and the DSP

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Photo by Negative Space

Are you an autistic adult, living in Australia?  Struggling to get a job? Regularly feel overwhelmed, anxious, or unable to manage? Wish you had a bit of extra financial support?

Well, Centrelink is actually here to help.

 

Centrelink offers the DSP: Disability Support Pension, a stable and guaranteed fortnightly support payment… and it’s available to autistics!

 

Eligibility for the DSP

To be eligible for the DSP, you must be an Australian resident and:

  • Not be rich (yep, if you have thousands of dollars in your bank or own three cars and a boat, you probably will not be eligible).
  • Be at least 16 years old, and not older than 66.
  • You have a medical (diagnosed) condition that is long-term (2+ years) or a lifelong condition (like autism!).
  • Your condition “stops you from working” (i.e. you cannot manage working weekly full-time hours because of associated challenges that come with your condition).

 

How to apply for the DSP

To apply for the DSP, I strongly recommend you FIRST talk to your counsellor/ psychologist/ psychiatrist about the process.  You will need the support of your primary therapist to get yourself better situated to be assessed as “acceptable” for the DSP. If you do not have a current primary therapist, get one (or track down your previous therapist).

After you’ve spoken to your therapist about implications of getting the DSP (or not getting it!), speak to your Job Network provider (or Centrelink case worker) about the difficulties you are having with finding work, and that you’re thinking about applying for the DSP. They will probably make a “job assessment interview” for you.  This is a discussion with a Centrelink psychologist, so the next steps are REALLY IMPORTANT to do as soon as you can!

  • Go to your local doctor and get them to fill out THIS FORM (clicking this will download the PDF). The form asks your doctor to verify your conditions, what they are, how long you have had them (P.S. autism is lifelong), and what treatment you are undertaking.  Tell the doctor that you are wanting to claim the disability support pension, and ask your doctor to also please add a letter addressed “to Centrelink assessors” that includes your medical history, medications, and their official opinion of your conditions.

 

  • Ask your therapist if you can give Centrelink their telephone number and email, so a Centrelink psychologist can call them about the DSP. Ask them also to write a letter detailing your condition because this will support your application.

 

  • Get official reports about your condition(s), so that Centrelink has all the information they need to process your application.  Get a copy of your diagnosis report (those of you diagnosed with autism will remember this is the additional charge after receiving diagnosis: your diagnosing psychologist needs to be paid to write you a report). If you have ever been to psychiatric hospital, try to obtain a report from them too.  Include any other medical information that might help (MRIs, shock-therapy results, group therapy reports, etc), and get letters from your employer, teacher, parent, caregiver (if relevant) detailing your difficulties at work/ in relationships, etc.

 

Right. Got all that info? Now, and only now, apply, using THIS FORM (clicking this will download a PDF).  This form is the official application for the disability support pension. Make sure to fill in everything carefully.  It’s a long long long form, so if you need help, ask your caregiver, partner, or therapist to assist. ALSO, in question 174 (How does this treatment affect your ability to work or study?), it means ‘How does [your condition] make things hard for you?’ — so you may like to include the difficulties you face daily with your autism.

Once you have filled in the whole form, go into your local Centrelink office and hand in your form (printed out), and include ALL the medical details you obtained earlier.  That means, bring in your diagnosis reports, medical and psych hospital reports (if relevant), medical form from doctor, letter from doctor,  letter from therapist, letters from caregivers (if relevant) AND the application form.  Also bring in your forms of identification as a Centrelink officer may want to check that on the day.

 

Managing the DSP interview(s)

You will no doubt need to go through two separate interviews to be assessed for the DSP. The first interview will be held at your local Centrelink office.  The second interview will be held at a psychologist’s office in your local area.  Centrelink staff will organize both these interviews with you, and you will also be sent out a letter to confirm.

Bring a support person along to the interviews IF YOU WANT.  But I caution you, only bring a support person if you feel they will improve your chances of getting the DSP. See below—

The interviews are about assessing your autism (and other conditions, if you have them). Because you are being assessed, it is vital that you are JUST YOU.  So that means no nice outfits, no coping mechanisms, no softeners, no ‘wearing a mask’ at the interview– you are being assessed for your condition… not your ability to pretend you are normal!

It is essential that you present to interview as your true self.  I know, it will be hard and anxiety-ridden and you may need a few days to recover, but the Centrelink assessors need to see the real you: the autistic you.

Going out into the world (for many autistics) involves “suiting up”, wearing our headphones, dark glasses, dressing up, slapping on makeup and a smile…. Being superbly polite, monitoring ourselves, not speaking up, behaving ‘the right way’… But that’s not your autism, is it?  That’s you, camouflaging… That’s you HIDING your autism.

Bottom line is: a hidden-you will not get the DSP.

 

After the DSP interview

After each DSP interview, you will feel horrible.  Just sayin’.  Yep, if you have been showing them your authentic self, it is likely you will feel shaky, vulnerable, meltdowny, sad, embarrassed, and maybe even horrified.  You may not be able to walk right, you may not be able to think straight.

As such, make sure you have a support person that you can call or be with immediately after your interview! This is very very important. Take time to calm down after the interview, do something nice for yourself and recharge.

After all interviews, you need to wait for the verdict.

If you are approved, the DSP payments will be paid as soon as possible.

If you are rejected, you can still appeal (and I highly recommend this).  In such a case, ask what the grounds of rejection were, and then get more medical data to prove your condition.

 

Why bother with the DSP?

Going for the DSP is a process, but it is worth it. If you are diagnosed with autism, you ought to be supported — you DESERVE support, because I know — things are hard living with autism! Getting some government financial aid is helpful, and it will help you.

The DSP is a flat-rate of payment, and then you receive energy supplements and rent assistance on top of the payment.  It provides you with a stable payment that does not go away or get removed suddenly.  It gives you peace of mind.  Yes, you can work a few hours a week under the DSP without losing it, and the extra money gives you enough to comfortably pay for your therapy, medications and still be able to live independently.

I think DSP should be mandatory for autistics because we want to work, but somehow we just struggle and it gets so depressing…  The DSP gives us peace, and if we ever do feel able to let go of the pension and move into full-time work, we can then do so with ease (not anxiety and depression), because the government has given us this avenue to feel better supported in our autism.

So, if you follow these steps above, I think you will have a better chance to be approved, and I really hope you do get on DSP.

Bless!

 

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More info:

 

Aspie Xmas Survival Guide

candle celebration champagne christmas

Photo by Pixabay

Ah, it is that time of year again: Christmas.  There is so much to enjoy about this festive period, yet – being autistic, it can also be hugely exhausting.

Managing your energy levels during this busy time can be a delicate balance act, however you can enjoy the celebrations and take care of yourself.

You can get involved and still honour yourself.  It’s just a case of being self-aware and giving yourself what you need.

If you find Christmas often leaves you tired and worrisome, this post will help ensure you do not end up running on empty.

 

1. It’s okay to say NO

Just because people are inviting you out does not mean you have to say yes.  Saying No is self-care. Make sure you build some breathing space into your calendar to allow some time to re-energise yourself. You can block out hours or days if need be. If anyone asks about your days off, you can say “I know myself. I need time for me” — then no-one really can say anything more on the topic (because this is about respect).

 

2. Find moments of quiet

During parties and other gatherings, make sure you give yourself little quiet moments here are there to catch your breath and pause.  Develop awareness of how you feel and give yourself breaks when you need it.  You may like to focus on external sensations at first (is my heart beating faster? am i shaky? do i feel sweaty?) to gain some sense of your feelings, then ask yourself “do i need some quiet?”.

 

3. Be gentle with your body

Christmas is a time of indulgence and temptation. I am not about to suggest that you should give up all the delicious goodies and treats.  Just maintain your energy levels in balance by getting enough sleep, drinking lots of water, walking a bit, and eating a few greens.  Treat yourself, but remember your body needs kindness too.

 

4. Enjoy yourself

This holiday season is for everyone, so turn it into something that feels right for you.  If you want to spend an afternoon curled up on the couch, then do it.  Whatever your traditions or bah-hambug-ness, the origins of Christmas are about coming together and shining a light on the darkness, so if your togetherness is you and a book, and your light is quite literally a lamp, that sounds fine to me! Do what you need this festive time; take control and do things your own special way.

 

Original text taken from ‘Pocket Christmas Survival Guide’ booklet which I designed for my group clients in 2016, “A is for Aspie”. I hope this guide helps everyone it can!

branch christmas christmas ball christmas decoration

Photo by Pixabay

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)

 

Meltdown vs. Shutdown vs. Tantrum

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Photo by Kat Jayne

Autistics have meltdowns. Autistics have shutdowns. This is just part of life. We experience the world at 100% and some days it can just all get too much.

I’ve heard recently a lot of talk around people using autism as an excuse for bad behaviour, specifically with respects to childhood tantrums… I want to clarify some things here.

I wonder if there is just not enough information about the differences between autistic responses to overwhelm and temper tantrums?

 

So, here’s my take on it all.


 

What is a 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 an autistic person is completely overwhelmed by something that is happening in their environment, or something that was said to them, they can *melt down to a childish state*.  So, a meltdown can look like: becoming reactive, stomping feet, throwing objects, screaming, banging things (or themselves), running away, etc…

Meltdowns are the result of sensory-overwhelm. Yep, this can be emotional overwhelm (too many feelings!), or too much light, texture, noise, aromas, people… Remember, meltdowns are never really about you. They are about the *environment* being too much for us to bare. A meltdown is completely non-reliant on your attention or reaction; it is a response to the environment.

 

How to help in a meltdown:

It’s generally hard to identify the start of a meltdown in your loved one. You may become cluely to their personal triggers, and this is definitely handy because it means you can help keep them calm… but sometimes LIFE just happens, and meltdowns occur.

If your autistic loved one is in a meltdown, stay calm. We dont need you also melting down! Please try to make sure they are somewhere safe, remove the offending sensory stimuli and leave them be.  Give your autistic SPACE. Avoid excessive verbal prompts. Aaagh, words are hard for us to process during meltdowns. Depending on the autistic individual and whether they have advised you of their needs, weighted blankets, firm hugs, or comforting sensory objects may help.

Meltdowns are not about a grab for attention or bad behaviour; this is simply a response to overstimulation, overwhelming factors.  Yes, as adults, we can rationally discuss the reasons why a meltdown is a silly action, childish and inappropraite. As adults, we can also agree to *not* meltdown, but essentially this is moot point. Meltdowns are out of our control. We do not choose to have a meltdown. They just sometimes happen.

 

black and white black and white depressed depression

Photo by Kat Jayne

What is a Shutdown?

A shutdown is an anxiety response to “too much”. It can be triggered directly by the sensory challenges in the immediate environment, or over a long-term exposure to being in crowds, at work/ school, around media/ TV. When an autistic person is completely overwhelmed, they may *shut down to a silent state*.

Shutdown is a coping response to overwhelm.  It is not reliant on you; it is not bad behaviour, nor is a grab for attention. It is a response to the environment. We need to shut it down, shut it out, and find peace.

A shutdown may look like:

  • They may hide away in a small dark space
  • Get far away from the noise/ offending sensations
  • Close their eyes
  • Block up their ears
  • Non-communicative/ Silent
  • Non-responsive
  • Staring blankly, as if they are “not there”
  • Not being able to move

 

How to help in a shutdown:

Noticing a shutdown about to happen in an autistic can curb us back into reality and make us feel stable again. The triggers and signs of shutdown will differ with each person you meet, but for me it starts with stuttering and confusion in my mind. I quickly lose my ability to think and to speak, and then it just stops all together. When I begin to stutter, my partner Z. will tell me to sit down, breathe, say ‘everything is ok’, offer me a comfort object, and that helps me so much!

If your autistic loved one is in shutdown mode, make sure they are somewhere safe, remove the offending sensory stimuli and leave them be.  When the autistic person has calmed down you can rationally chat about ways to manage the future. I recommend they keep a mood calender and to record their worries in a seperate booklet. The worry book can then be discussed with therapists/ parents/ partners together with your loved one to remedy or remove some of these anxieties.

 

“A tantrum is an on/ off event, where the person is SOLELY seeking a response from you”.

 

What is a tantrum?

A tantrum is a form of bad behaviour, meant to attract attention, often puported by young children (and some adults). Tantrums happen because these people do not know how to communicate their complex feelings of frustration, guilt, anger, or disbelief. As an expression of temper, they cry, stomp their feet, throw objects or scream… and why? Because something did not go their way. A tantrum feeds off attention with even negative comments propelling the emotional response… A tantrum stops when good attention is received.

What makes a tantrum different to an autistic meltdown or shutdown is that a tantrum is an on/ off event, where the person is SOLELY seeking a response from you. For example: The child wants a chocolate bar. You say ‘No’. Child screams and kicks and cries. You give in. Child gets chocolate bar. The screaming and kicking stops. This is a tantrum. If this event occurred in an autistic meltdown, the child will keep screaming regardless of whether a chocolate bar is presented or not.  Why? Because in an autistic meltdown, the denial of a chocolate bar is not even remotely related to the emotional outburst. You may be able to calm your autistic child down in time, but in autism, your interventions will not switch the behaviour on and off.

 


In Sum…

An autistic experience of the world being too overwhelming, and resulting in either a meltdown or a shutdown is NOT bad behaviour. We cannot control this. We do not choose this. We are not being bad.

Knowing the difference between a meltdown and a shutdown can help when working with, living with, or being with autistics. We understand that these intermittent experiences and responses to stimuli can be frustrating or unusual for you.

Yes, therapeutic interventions such as psychotherapy can help us manage our own emotional space, yet sometimes sensory overwhelm creates a response of meltdown or shutdown in us. What we really need is your patience and calm and awareness that we are not having a tantrum, or acting out…. we are autistic.

At times like these, we ask for your kindness.

The Coffee and Candy Diet

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Photo by picjumbo.com

No nutritional plan will “cure” autism, any more than a nutritional plan could make it rain in Guatemala… but there is something to be said for the coffee and candy diet. Nope, I’m not talking cures. I’m talking PRODUCTIVITY.

I know, I can hear you now, cringing over the thought of recommending anyone to eat a diet high in all the “bad things”, but hear me out. In some cases where your autism has markers of ADHD or periods of mania, a coffee-candy diet can actually benefit.

Attention deficit hyperactivity disorder (ADHD) is a neurodevelopmental disorder, which can co-exist with autism.  In ADHD, individuals have issues of inattention, hyperactivity, and impulsivity. Caffeine and sugar, when administered in the right dose can curb much of these ADHD problems.

 

The positives of a coffee and candy diet

Certainly following this diet without eating ANY healthy items is a bad idea.  I recommend starting the day with a nutritious breakfast, eating a late lunch and a tiny dinner…. and in between is coffee and candy time! WHY? Well, these two foodie items increase happy chemicals in your brain, help you get (and stay) focused, be alert, and it gives you a super spike of glorious energy. Sooo helpful when you have work that needs to get done!

Research (here, here, here, and here) shows that drinking a moderate amount of caffeine daily (<6 cups) can dramatically reduce depressive symptoms, increase productivity and cognitive functioning, as well as lessen suicidal ideations. As for sugar, the general view is that it’s harmful (a faux pas!), but the fact remains: our body NEEDS glucose to function.  This research from NASA shows without sugars in the blood, we fail at cognitive tasks, become less vigilant, forgetful, drop our attention, lack endurance, and feel flat (all bad things, when you’re looking at it from the astronaut point of view).  So, sugar and caffeine really does have some positives!

 

The negatives of a coffee and candy diet

Because coffee and candy are stimulants, addictive, and dramatically affect the body’s blood glucose levels, going haywire on this diet can be a very bad thing indeed.  Too much of anything is generally bad, and overdoing it with either coffee or candy is no exception.

Too much coffee can lead to agitation, irritation, shakiness and difficulty sleeping.  Caffeine can enhance anxiety symptoms, and in some people, it may trigger anger spells.

Too much candy can lead to personality changes, mood swings (triggering manias or depressions), exacerbating anxiety, and of course, overdosing on sugary treats contributes to obesity and physical health issues.

Mixing coffee and candy also has a dark side.  When coffee and candy get together, they give your body huge surges of energy generating spikes of ‘highs’ and then crashing dips of ‘lows’.  Within hours, you may swing between these states, leading to intense cravings for more candy (sugars) or more coffee (stimulants).

 

Finding a balance with a coffee and diet

The key here really is BALANCE and AWARENESS.

Yes, mixing coffee and candy into your diet can be hazardous for some, but for others, this diet really helps us maintain focus and be productive.

To follow the coffee and candy diet, it is important to continue eating a healthy breakfast, and a taking break to eat a small late lunch that consists of low-GI foodie items (that have a slow release of energy) such as brown rice, oats, sweet potatoes, vegetables, pulses. When you combine the coffee and candy diet with a staple of low-GI foods, you can care for your body whilst also giving yourself a boost of energy and focus. Having a tiny dinner is recommended, as the “cap” to your coffee/ candy day. For dessert, have a piece of fruit instead of more candy.

I recommend as well, to drink a glass of water in the morning before your first coffee, and lots of water at the end of your day, to make sure you’re not dehydrated from all the coffee and candies.  Drinking water before bed will help you settle into the night hydrated and able to sleep better.

I understand this is a strange “diet” to follow… but for me, I find this diet really positive for my well-being.  It can help lift me out of a depression-space, encourage me to be motivated, get focused and think more clearly.  I cannot simply eat candy and feel good, or drink coffee and feel good.  For me, I need the combination, and for it to work, I need to look after those other dietary elements (healthy, low-GI meals, drinking water) as well as be patient with myself (self-care!).

This diet plan may not work for you, but it might! You can always give it a go… and see if it benefits you, or what adjustments you need to make to find your own happy balance.

Remember, everyone is different, every autistic, every ADHDer– we’re all wired slightly different, so perhaps this diet will work for you.

Drop me a line or comment with your thoughts on this, or just to tell me your favourite candy… I love sour gummi bears! 🙂

 

 

Diagnostic Criteria

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Autism is a neurological condition, present from early childhood, characterized by great difficulty in communicating and forming relationships with other people and in using language and abstract concepts.

Since the 2013 change in diagnoses, classical autism and Aspergers now share the same diagnostic criteria, with severity tables indicating “low” or “high” functioning ability.

The shift in diagnostic criteria has caused some disruption in the autistic population, with fears of greater stigma… but I think it’s actually given those with “high” functioning autism a chance to access better services.

As you may know, the condition of autism is a spectrum, so abilities of a person who is considered “high functioning” may not pertain to a complete comfort or “normality” in all areas of their life. As such, the new criteria has allowed all autistics a chance to be seen for their difficulties and their strengths.  And in terms of stigma/ discrimination, I fathom this is more a challenge at a social level.  Our diagnostic criteria ought not impact this…

Anyway. Without further ado…

The formal diagnostic criteria for Autism Spectrum Disorder, per the new Diagnostic Statistical Manual for Mental Health (299.00, American Psychiatric Association, 2013) is as follows:

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A. Persistent deficits in social communication and social interaction across multiple contexts, as manifested by the following, currently or by history :

1. Deficits in social-emotional reciprocity, ranging, for example, from abnormal social approach and failure of normal back-and-forth conversation; to reduced sharing of interests, emotions, or affect; to failure to initiate or respond to social interactions.

2. Deficits in nonverbal communicative behaviors used for social interaction, ranging, for example, from poorly integrated verbal and nonverbal communication; to abnormalities in eye contact and body language or deficits in understanding and use of gestures; to a total lack of facial expressions and nonverbal communication.

3. Deficits in developing, maintaining, and understanding relationships, ranging, for example, from difficulties adjusting behavior to suit various social contexts; to difficulties in sharing imaginative play or in making friends; to absence of interest in peers.

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B. Restricted, repetitive patterns of behavior, interests, or activities, as manifested by at least two of the following, currently or by history:

1. Stereotyped or repetitive motor movements, use of objects, or speech (e.g., simple motor stereotypies, lining up toys or flipping objects, echolalia, idiosyncratic phrases).

2. Insistence on sameness, inflexible adherence to routines, or ritualized patterns or verbal nonverbal behavior (e.g., extreme distress at small changes, difficulties with transitions, rigid thinking patterns, greeting rituals, need to take same route or eat food every day).

3. Highly restricted, fixated interests that are abnormal in intensity or focus (e.g, strong attachment to or preoccupation with unusual objects, excessively circumscribed or  perseverative interest).

4. Hyper- or hyporeactivity to sensory input or unusual interests in sensory aspects of the environment (e.g., apparent indifference to pain/temperature, adverse response to  specific sounds or textures, excessive smelling or touching of objects, visual fascination with lights or movement).

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C. Symptoms must be present in the early developmental period

(Symptoms may not become fully manifest until social demands exceed limited capacities, or may be masked by learned strategies in later life).

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D. Symptoms cause clinically significant impairment in social, occupational, or other important areas of current functioning.

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E. These disturbances are not better explained by intellectual disability (intellectual developmental disorder) or global developmental delay.

Intellectual disability and autism spectrum disorder frequently co-occur; to make co-morbid/ dual diagnoses of autism spectrum disorder and intellectual disability, social communication should be below that expected for general developmental level.

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Specify if:

  • With or without accompanying intellectual impairment
  • With or without accompanying language impairment
  • Associated with a known medical or genetic condition or environmental factor
  • With catatonia (refer to the criteria for catatonia associated with another mental disorder, pp. 119-120, for definition)

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Specify current severity:

  • Severity is based on social communication impairments and restricted,
    repetitive patterns of behavior–

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Level 1 – Requiring Support – Without supports in place, deficits in social communication cause noticeable impairments. Difficulty initiating social interactions, and clear examples of atypical or unsuccessful response to social overtures of others. May appear to have decreased interest in social interactions. Inflexibility of behavior causes significant interference with functioning in one or more contexts. Difficulty switching between activities. Problems of organization and planning hamper independence.

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Level 2 – Requiring Substantial Support – Marked deficits in verbal and nonverbal social communication skills; social impairments apparent even with supports in place; limited initiation of social interactions; and reduced or abnormal responses to social overtures from others.  Inflexibility of behavior, difficulty coping with change, or other restricted / repetitive behaviors appear frequently enough to be obvious to the casual observer
and interfere with functioning in a variety of contexts. Distress and/or difficulty changing focus or action.

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Level 3 – Requiring Very Substantial Support – Severe deficits in verbal and non-verbal social communication skills cause severe impairments in functioning, very limited  initiation of social interactions, and minimal response to social overtures from others. Inflexibility of behavior, extreme difficulty coping with change, or other restricted / repetitive behaviors markedly interfere with functioning in all spheres. Great distress / difficulty changing focus or action.

 


 

Please be mindful that diagnoses MUST be undertaken by a trained professional, commonly a clinical psychologist or psychiatrist.  While you may self-identify, you cannot access services readily without a formal diagnosis.

Hey Girl: You Don’t Look Autistic!

Why autistic women don’t fit the DSM-5 criteria

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Photo by Leandro R. Barbosa on Pexels.com

Autism is a spectrum, so regardless of what you know, you’ll rarely see someone who exhibits exactly what you know. Perhaps you are unaware, but the main diagnostic criteria that is present in the DSM-5 pertains to the MALE characteristics. Much like most of medicine, a woman’s experience has been reduced to the idea that we are simply “little men”. See this article for more on that!

In females, autism presents differently.

*enter shocked face here*

A female’s gender role (i.e. how we are forced into social situations from a young age… aka gender stereotyping) leads to this ability to apply our attention to detail and observation skills to very good use. What do female autistics do from childhood? We copy. We mimic social cues and social interactions which makes us go ‘unseen’. We can read you and copy you, so our behaviour often does not reflect what you *think* you know about autism.

Now, I am sure someone wants to say, “but that’s just mirroring; every child does it”. Indeed. That is true for non-autistics. We, however, are aware that we do not fit in, even though we look like you; we know we’re copying you. It’s a cognitive thing. It’s NOT automatic. It’s thought-out, planned copying. And the interesting thing about female autism is that our level of copying you is actually often better than how you do it.

Growing up, females on the spectrum learn to fit in. We realize it’s a survival mechanism, so we survive. We hide our autistic traits, we “pretend” to be normal, for YOUR benefit. It is extremely taxing on our well-being, and many women on the spectrum (including me) experience anxiety and depression at times, trying to produce this “perfect social expression” so that you will accept us. We do it do be accepted, even though it hurts us.

Other than the mimicking, females on the spectrum struggle because our special interests are most commonly things that are strangely considered “normal” for our gender. Where a boy may fixate on trains (which is often stereotyped as inherently male), the appearance of such an interest is included as an example in the DSM. However, a girl with a passion for teddy bears, flowers, or sewing — this is considered ‘acceptable’…. even if her whole room is covered with those things, or if she seems obsessed with those things, it’s still okay. Somehow, being female means “it’s normal”. And, furthermore, when a female autistic child fixates on 1 person, making that person their special interest, no-one bats an eyelid — everyone just says, “aww she has a best friend”. If she is shy, that’s also acceptable. If she is overly energetic, that is “fun”; babylike, that is “cute”; a bookworm, that is “studious”… we constantly overlook the female experience with gendered thoughts!

Do I look autistic? Probably not. But then again, you are looking for male characteristics.

And one more thing — when ANY autistic person is completely involved in something they love, be that a hobby or a job, they will (like any human) excel. We, when doing what we are skilled at, qualified for, and enjoy; we will shine. We may seem unusually extrovert, fun, loud, engaging and/ or inspired. We may seem “without trouble”, and really — is that not a true reflection of any human in such a similar situation?

I excel in teaching and leading groups; reaching, inspiring, mentoring and supporting others. I shine where I am designing new products, being innovative, developing something, solving a problem, applying research, or simply “doing good”.

If you want to help autistics shine, let us demonstrate our talent and ability, and stop saying to us “you don’t look autistic”; better be humble and note your destructive bias. Better be kind and see our ‘humanness’ first.