DD – Actually Autistic vs Poor-Me

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Photo by Ylanite Koppens

There’s a hashtag going around on autism forums: #actuallyautistic.  It is trying to make it exceptionally clear that the authors of these posts are, well– actually autistic. Being actually autistic matters.  Our experiences of the world differ.

What is “actually autistic”?

Well, let’s start by making it clear what it is not:

  • Actually autistic is NOT a parent who has an autistic child
  • Actually autistic is NOT a supporter of autism
  • Actually autistic is NOT a person who thinks they are autistic
  • Actually autistic is NOT an introvert or shy person

Actually autistic = formally diagnosed with autism

 


EDIT FEB 2019: Also see my follow-up post, as I have got a shitload of trolling on this site since I wrote this blog… and so, if you’re all pissy with me because I decided
to write my own opinion in my own blog, maybe you can learn why I wrote this before you get all bitchy and judgy about me and then feel the need to vilify and attack.


 

“I think I might be autistic”

I understand that some of you may think you could be autistic.  Perhaps someone has suggested it to you, or you have read a bit about autism and have thought, ‘Oh my; that sounds like me!’

I also know there are many authentic might-be-autistics out there and you all are just figuring out your life, trying to see where you fit into the world, or perhaps you totally identify and feel your autistic traits to be true.  I get it.  I’m not shaking my fist at you! Go find your way; go seek out who you really are…

If you can, if you’re ready and you think might be autistic, then I urge you: just go get the diagnosis.  Yes, it is expensive, but then you SAVE up and get the diagnosis!  I saved for mine.  It cost over $1000 in total, to get my diagnosis and mini-report…. but I got the diagnosis. I wanted confirmation of my suspicions, and I wanted support (which you can only officially get with a diagnosis, by the way) as I was really struggling with make ends meet, find work, and figure things out.  Having a diagnosis means you can get a pension, and get help at work, school and in life. I did reflect on whether I could accept myself with a “disability’, and that stopped me getting my diagnosis formally issued for about a year. Perhaps I was in denial?  But I did get one, and for me, the diagnosis was a God-send. It helped me a lot.

So, if you think you might be on the spectrum, just take that leap and start the diagnosis process.  I think it’s worth it.

Plus, if you’re not diagnosed with autism, you will learn more about yourself and have access (now) to a psychologist who could help you further with your difficulties and symptoms.

 

“Poor Me, I have [condition]”

I do not have a problem with people who feel they might be autistic, but I do hold an issue with: *people who think might be autistic going around telling people they are autistic and then demanding reasonable adjustments for “their autism”.*

What’s ‘reasonable adjustments’?  I mean, in legal-speak: It’s the act of requiring a workplace to make accommodations for you based on your mental health issue or disability.  So, I’m not just talking about asking someone to speak quieter, or that you like to avoid crowds, or that you don’t want hugs. This is about a formal accommodation made directly and in an official capacity, related to your diagnosed condition.

I contrast “actually autistic” with “poor me” as this is a big problem in our community, as well as in the other mental health fields.  See, the ‘Poor Me’ status (also known as victim mentality) is superbly harmful to those of us actually diagnosed with a condition.  Whether you are actually autistic or actually bipolar, or actually depressed, you will know– when someone goes around claiming they are so hard done by for their numerous (non-diagnosed) problems, it just gets old.

If you share traits with a condition, it does not mean you have it—

If you like to keep to yourself, do repetitive moments and collect stamps, that does not make you autistic.  If you have anger, mood swings and go on wild shopping sprees, that does not make you bipolar. If you are picky and wash your hands a lot, that does not make you ”OCD. If you feel sad sometimes, that does not make you clinically depressed.

 

What is a ‘Poor Me’ person?

The Poor-Me is an attention-seeker first as foremost.  They lead conversations with their symptoms, and then expect others to swoop in and offer commiserations.  You may know someone like this…. Their lives are ‘so difficult’ on account of “their condition” and we are meant to say:  “Aww, Poor-You for that [condition]”.  They are the ones with every new fandangle disease and disorder, or emotional upheaval or issue… And it’s almost as if our pity matters more to them than anything else.  When we offer to help, our help is rejected, because to the Poor-Me, solving the problem would mean they have nothing to complain about!

See, a Poor-Me uses “their condition” as an insurmountable problem.  It is the focus of everything in their life, as if negativity revolves around them; their life is filled with constant badness and everyone just wants to hurt them. Why? Because of “their condition”. It is the core reason why they cannot do anything in life.  “Their condition” causes all the bad things….

Before you jump on me about being insensitive, I want to stress— I know, when you have been actually-victimized (like abused), you’ll stay in this dark place of negative loops a long while.  I also know if you are #actuallydepressed, a victim mentality just happens.  I get all of that.  But I am not saying that thinking everything sucks when you’re clinically depressed or reflecting on your childhood abuse  is the same as being a ‘Poor Me’.  Sure, sometimes (if you’re honest), you know you’re acting out…. but for the most part, being depressed makes you care so very little for anything and anyone, getting attention is the last thing on your mind!

The #actuallypoorme individuals, however are ALWAYS seeking attention for “their conditions” and more often than not, they do not even have a formal diagnosis!

 

“Can I be ‘Poor-Me’ and #actuallyautistic?”

This is sometimes a possibility, and I have found it tends to happen when individuals are just very recently diagnosed with autism.  I call this “diagnosis-shock”.  Even if you were expecting the diagnosis, it can still seem overwhelming to now get a piece of paper that essentially says: ‘yes, you have a disability’.

When you are first diagnosed, it can feel as if your whole world is caving in and you are unable to achieve anything!!! But *BREATHE* take a break, reflect on things a while…. Look, you made it this far– you are so very capable in life! Have faith in yourself. This is simply a moment of shock.  Yes, you are diagnosed with autism, but that does not mean you are an invalid.

I have found #actuallydiagnosed individuals who have moved out of those first few months of diagnosis-shock are extremely grounded individuals.  They move forward despite their diagnosis. They want to achieve things, start relationships, have jobs, make things work despite their condition.

I also know that many autistics have been victimized in the past and thus will often come across as needy and attention-seeking, and this, again, is something most of them choose to work on.

A ‘Poor-Me’ will not even try to move forward. A ‘Poor-Me’ will fight everything in their world, push away your help, refuse to look at themselves (per therapeutic change), and simply lament “their condition”– using it as a barrier to everything and anything.

The most sad thing about interacting with a ‘Poor-Me’ is that they would rather cut you out of their life than accept even a inkling of responsibility or notion that perhaps they are in victim-hood…

 

Live your TRUE SELF, not your victim self

It is a hard thing indeed, to ask an individual who has been truly and deeply victimized, to put aside that victim role and life their life as a real authentic self.  I highly recommend getting a good therapist to help you find your way into this proverbial light; out of the darkness… However, challenging, it is possible to do this– I mean, I did. I overcame such immense horrific dread, to see the light…

You are not ‘Poor Me’. You do not need others to stroke your ego, or commiserate your plight of “your condition”. You do not always need to be the downtrodden and sad. That is not YOU.  Yes, you have a diagnosis, but you can live well despite it. Yes, you may identify truly as autistic, but you’re not restricted because of this!

Accepting your condition takes time, but you are a determined individual.  The diagnosis, the ownership of who you are– is but one aspect of you. Society may like to define you as disabled, dysfunctional or not good enough…. but that’s only one way to look at it all.  See, this also highlights your difference, your uniqueness, and your beauty.

You have made it this far, and while you struggled, you kept pushing onward.  You learned interesting things about the world and things about yourself.  Not everything in the past was bad; there were good times too, there were positive lessons and experiences.  Even people who survived the concentration camps speak of moments of lightness and deep learning in that place of sick darkness.  Humans persevere; it is our brilliant shining quality… and you will shine on too!

Being #actuallyautistic or #actuallyschizophrenic or #actuallybipolar or whatever your diagnosis is — this is who you are.  It is your identity.  So make it yours!

 

*

Bless 🙂

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.

Bipolar vs. Autism

Research shows that autism shares signatures with schizophrenia and bipolar disorder. But is this a case of co-occurrence, or just that of misdiagnosis?

 

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For those who are not familiar with bipolar disorder, this is a condition which affects MOOD. Individuals slide from feelings of intensely elevated (mania) to intensely low (depression) in a pattern of repeating episodes. Some people cycle rapidly through these moods, others follow more slow set patterns.  Bipolar individuals get “stuck” in moods, and often experience extreme negative intrusive thoughts which can lead to relationship difficulties and suicidal ideation.

In autism, individuals also experience relationship issues and mood disturbances. We too get “stuck” in emotional states and experience periods of mania and long-standing depression.  We hyper-focus, suffer irritability, intrusive thoughts and suicidal ideation.

So what’s up? Are all autistics bipolar, or all bipolars autistic?

 

Can bipolar and autism co-occur?

Many researchers and therapists say NO. They say that autistics are often misdiagnosed as bipolar, because of the periods of mania that many of us experience. I have to agree.  I have met many autistics who have been misdiagnosed and given medications for bipolar due to their presentations of mania, depression, anger, sadness and general confusion about the world.  In women, most often the misdiagnoses are disassociation or borderline personality disorder; in men, bipolar or schizophrenia.

An old study (which is too often quoted as the prevailing thought) showed that 27 % of autistics also have symptoms of bipolar disorder, and I reckon that’s where it stops: SYMPTOMS.  Just because you have some symptoms of the bubonic plague doesn’t necessarily mean you’re about to die from the plague.  You could just as easily have the flu, or an infection from an untreated blister.  My point is that while there are overlaps,  I think bipolar is mistakenly over-diagnosed in those with autism.

I think there’s something to be said about how autistics and bipolar individuals relate.  I can sort of see both sides, because I have bipolar friends… I think bipolar is distinctly different because there’s a much stronger lean towards negativity, and to the idea that the Self is not true, or not clear.

Christopher Baddock explains this well. He says—

“Autism involves difficulties reading others; it is an inter-psychic disorder. Bipolar, however, is …intra-psychic mentalism: in other words, [difficulty] reading of your own mind. Normally, we read our own mental states by way of sensing our moods, thoughts and feelings in relation to something, and report these to others with phrases like I feel like Y; I’m in the mood for X; or, I’m happy with Z. In bipolar disorder, these internal mind-readings become pathologically exaggerated into crippling swings… often combined with delusional ideas about the self, messianically megalomanic or suicidally self-critical as the case may be”

So, with autism, we can get to understand ourselves and learn what our authentic feelings are.  We may have intrusive thoughts (OCD), but the grounding is still us to ourselves in clarity of feeling.  When we look externally, THAT is where we struggle.  In bipolar, they look within and struggle.

 

What are the differences and similarities between bipolar and autism?

The symptoms of bipolar disorder fall into two overarching categories: mania and depression.  Most untreated bipolars flip between the two and rarely find any periods of “normal” or “balanced” self. A “normal” state for a bipolar individual varies, but what I know from friends with bipolar, they say it’s a place where they have control over their emotions and feel stable to get things done without feeling pulled towards a pole. So, without further ado, here’s the bipolar symptoms, based on the mood extremes–

Symptoms of a manic episode include:

  • excessive happiness, upbeat and wired
  • suddenly changing from joy to irritability to angry to hostile
  • increased energy and agitation
  • restlessness
  • exaggerated sense of self and inflated self-esteem
  • sleep disturbances
  • poor judgment and impulsive behaviour
  • being easily distracted, forgetting stuff
  • drug and alcohol abuse, excessive sex-drive or promiscuity
  • mania leading to difficulties maintaining relationships

 

Symptoms of a depressive episode include:

  • acting or feeling down or depressed, sad, or hopeless or worthless or VICTIM-like
  • difficulty making decisions
  • loss of interest in normal activities
  • sudden and dramatic changes in appetite
  • unexpected weight loss or weight gain
  • fatigue, loss of energy, and sleeping lots
  • inability to focus or concentrate
  • suicidal thoughts or attempts
  • disconnecting from relationships, people, things

 

Autism is a unique and complex disorder where symptoms vary from person to person, along with the severity of those symptoms.  In general, autism presents with:

  • challenges with social interaction and communication
  • difficulties creating and maintaining relationships
  • a tendency to prefer routine and structure
  • focus on repetitive behaviours (often undertaken leading to self-soothing)
  • displaying very specific preferences for item placement or activities

If there’s auditory processing disorder alongside autism (a common dual disability), the autistic can also present with difficulties concentrating, remembering information, and an agitated state.

 

As you read the two groups of symptoms– the mania/ depression from bipolar and those of autism, you’ll see they are remarkably different.  I think the overlap is seen as times where the autistic person is emotional.

 

Anyway, I guess it’s possible you’re reading this and you’re that one person who is legitimately bipolar AND autistic! I guess it’s possible to have both, but if you have got a bipolar diagnosis and you feel as though it doesn’t quite fit…. maybe you actually have autism?

Just a thought.

Hey Girl: You Don’t Look Autistic!

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

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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.