Ngā kaipānui kia ora
When I tell people about Autistic Pride they say, “how can you be proud of something that you have no control over? That doesn’t make sense? How can you be proud of being Autistic?”
Lyric Holmans, Neurodivergent Rebel
April is Autism Awareness month, and today, Saturday 2nd April is World Autism Awareness Day. It’s a time when many autistic people “go into hiding”. Why? Because autism is still portrayed as a bogeyman – something that is undesirable, that destroys families, causes misery to “sufferers”, that needs to be eliminated. No it’s not. From my perspective, autism describes a way of perceiving and experiencing the world that is different from the way the majority of the population perceives and experiences the world. It’s not so much about deficits and disabilities, it’s about an alternate way of being. The bogeyman, if there is one, is that the non-autistic world writes of the autistic world as something undesirable.
So back to the question “How can you be proud of being Autistic?” I’d answer by saying “In the same way one can be proud of being gay or black or trans or Māori or Native American or…”. It’s a way of saying “Even though society devalues me for being who I am, and puts obstacles in my path that limits my ability to develop to my potential, I deserve to be recognised as a worthy and valuable member of society, and my rights and needs are no less important than the rights and needs of anyone else”.
I object to having an Autism Awareness month for the same reason I’d object to a Gay Awareness month of a Māori Awareness month. Look at it this way: there isn’t anyone who isn’t aware of there being gay people, trans people or people of colour, but that does not prevent the likes of racists, homophobes and transphobes from spreading hate and disinformation about them. It doesn’t prevent normal, intelligent people from failing to appreciate the social barriers that are placed in the way of individuals who are members of minority groups – in other words intentional and unintentional discrimination.
Likewise, I doubt that today there is a single person who isn’t aware of autism. For goodness sake, in some quarters, there’s panic about an “autism epidemic” being accelerated by vaccines or 5G or plastics or the New World Order or GMOs or… something. In fact it’s nothing more that a growing realisation within the health sector of what autism actually is. What is sad is if they had consulted with actually autistic people instead of making lab rats of us, they would have had that “Ah ha” moment long ago.
What we need is not awareness, but acceptance at a minimum. Better yet would be valuing the alternative perspectives that autistics and other other forms of neurodiversity bring to society. Because Autistic people perceive and experience society and the world differently, we express our experiences and understandings differently. Accept that our differences are not deficits, but are a valuable and important part of the diversity that makes the human species what it is.
Embrace diversity!
Another Spectrum 
3 Apr, 2022 at 12:20 am
I don’t dislike awareness months so much because much of what they do is prompt people like you to put out intelligent, thoughtful explorations on what it means to be ________. I think the negative association with autism stems from a) the fact that some are mentally disabled by autism and unable to care for themselves; and b) that differing approach to life can be really painful in a neuro-normal world. My son struggled horribly in school, scouts and sports trying to be ‘just like everyone else.’ It wasn’t until we got and understood his diagnosis that we, together, changed our approach. Now he’s quite successful at pretty much everything he does, but he no longer tries to be like everyone else. You’re right, the problem isn’t with autistics, but the neuro-normal expectations put on them. And what better way to educate the world to this fact than autism awareness month. Thanks for your ongoing awareness education Barry.
3 Apr, 2022 at 2:29 pm
I used to love all the tv programming during the unofficial gay awareness month (June).
4 Apr, 2022 at 11:40 am
I believe that not only should all school teachers receive mandatory Autism Spectrum Disorder training, but that there further be an inclusion in standard high school curriculum of a child development course that would also teach students about the often-debilitating condition (without being overly complicated). If nothing else, the curriculum would offer students an idea/clue as to whether they’re emotionally/mentally compatible with the immense responsibility and strains of parenthood.
While some other school curriculum is controversial (e.g. SOGI, especially in rural residential settings), it nonetheless got/gets implemented. The same attitude and policy should be applied to teaching high school students about ASD, the developing mind and, especially, how to enable a child’s mind to develop properly.
It would explain to students how, among other aspects of the condition, people with ASD (including those with higher functioning autism) are often deemed willfully ‘difficult’ and socially incongruent, when in fact such behavior is really not a choice. And how “camouflaging” (or “masking”), a term used to describe ASD people pretending to naturally fit in, causes their already high anxiety and depression levels to further increase.
As a non-diagnosed ‘neuro-divergent’ boy with autism spectrum disorder, ACEs and high sensitivity (thus not always easy to deal with), the first and most formidable authority-figure abuser with whom I was terrifyingly trapped was my Grade 2 teacher, Mrs. Carol, in the early 1970s.
Although I can’t recall her abuse against me in its entirety, I’ll nevertheless always remember how she had the immoral audacity — and especially the unethical confidence in avoiding any professional repercussions — to blatantly readily aim and fire her knee towards my groin, as I was backed up against the school hall wall. Fortunately, though, she missed her mark, instead hitting the top of my left leg.
Though there were other terrible teachers, for me she was uniquely traumatizing, especially when she wore her dark sunglasses when dealing with me. I didn’t tell anyone about my ordeal with her. Rather than consciously feel victimized, I felt some misplaced shame. And as each grade passed, I increasingly noticed how all recipients of corporeal handling/abuse in my school were boys; and I had reasoned thus normalized to myself that it was because men can take care of themselves and boys are basically little men.
[P.S. At age 54, I still cannot afford to have a formal diagnosis made on my condition. (So much for Canadian “universal” health care.) It seems logical to me that if people have their ASD, ACEs, etcetera, diagnosed when very young, they should be better able to deal with their condition(s) through life.]
4 Apr, 2022 at 2:23 pm
My diagnoses are “informal” in that they were the conclusions of a psychologist and a mental health counselor after extended treatment (weekly sessions for 3 months, and twice weekly sessions for 6 months respectively). That was back in 2010 when I was 60. Neither recommended a formal diagnosis because at my age and having learnt coping skills, I would no longer meet the criteria in use at that time that were designed to assess children. Besides, our health system doesn’t cover ASD support for adults and I would have had to pay for the diagnosis myself.
The aslo were against it because of the misconceptions about autism, including within the health sector. I was told that my feelings and needs would likely be devalued or ignored rather than taken seriously, and as I get older, the threshold at which I’d be allowed to make decisions about myself would be much lower than would be given to a “healthy” individual. In other words there’d be a higher chance that my autonomy would be taken away from me simply because autistic people are presumed to have less ability to manage their own affairs. There is still a very long way to go before the non-autistic world learns what autism really is, and by this I don’t meant the general population, I mean those who make decisions about how autistics relate to the non-autistic world. We’re still studied as “lab rats” instead of being treated as people who can describe their experiences themselves. Just one example, I recently came across a study that concluded autistics lack Theory of Mind because they practice the same level of morality whether or not they know they are being observed, whereas “healthy” people are more moral when they know they are being observed. My observation is that autistics rate their values higher than interpersonal relationships, but of course, researchers never consider asking us why we are more consistent morally than non-autistics. They just measure the difference and then jump to a conclusion based on the concept that autism is a pathology – a list of deficiencies.
7 Apr, 2022 at 1:09 pm
(As I might have already said in a previous post) I don’t believe it’s just coincidental that the only two health professions’ appointments for which Canadians are fully covered by the public plan are the two readily pharmaceutical-prescribing psychiatry and general practitioner health professions. Such non-Big-Pharma-benefiting health specialists as counsellors, therapists and naturopaths (etcetera) are not covered a red cent.
Thus, I tend to get agitated when I receive a strong suggestion from within the media, however well-intentioned, to ‘get therapy’, as though anyone can access it, regardless of the $150-$200+ per hour they charge. For me, even worse is the fact that payment is for a product/transaction for which there’s only one party that is always a winner — the therapist’s bank account.
5 Apr, 2022 at 2:26 pm
Thank you for your thorough, thoughtful reply.
Though it may be clinically labelled as some other disorder altogether, I have a self-diagnosed condition involving a tumultuous combination of Autism Spectrum Disorder, ACE trauma and high sensitivity — which I freely refer to as a perfect storm of train wrecks. (Albeit I’ve found ASD has some symptoms similar to those of high sensitivity.) It’s one with which I greatly struggle(d) while unaware, until I was a half-century old, that its component dysfunctions had formal names.
Thus, it would be helpful (at least for me) to have books written about such or similar conditions involving a tumultuous combination of high sensitivity, adverse childhood experience trauma and/or autism spectrum disorder (the latter which, I’ve found, has some symptoms similar to high sensitivity).
I read a book about highly sensitive men that totally fails to even mention the real potential for additional challenges created by high sensitivity combining with adverse childhood experience trauma and/or an autism spectrum disorder. Similarly, The Autistic Brain completely excludes any mention of ASD coexisting with high sensitivity and/or ACE trauma, let alone the possible complications thus additional suffering created by such coexistence. And the book Childhood Disrupted, however informative, doesn’t even hint at the potential for having to suffer ACE trauma alongside ASD and/or high sensitivity.
I therefore don’t know whether my additional, coexisting conditions will render the information and/or assigned exercises from each of the three books useless, or close to it, in my efforts to live much less miserably. While many/most people in my shoes would work with the books nonetheless, I cannot; I simply need to know if I’m wasting my time and, most importantly, mental efforts.
5 Apr, 2022 at 8:24 pm
The problem as I see it is that almost all books/manuals about autism are written by non-autistics, and those that also cover hypersensitivity/hyposensitivity and/or ACE trauma are nonexistent. It’s really only in the last decade that the autistic voice has started to be listened to. I think the best source is directly from autistics and/or people facing similar situation to yourself. I’ve found a lot of help by subscribing to blogs of autistic people, and there are also forums and facebook sites that might be useful, although I found Facebook too “noisy” for my liking and mostly restrict myself to blogs where I can comment and receive feedback. I have learnt much more about myself through reading online articles by autistics that I have by reading documents by so called experts who are not themselves autistic.
I think most autistics receive high levels of bullying, especially as children and teens. I certainly received a lot, including group violence, so you’re not alone in that respect. I never reported the bullying and violence, partly because I was ashamed, partly because I’d convince myself that I did something to cause it and partly because I have prosopagnosia and wouldn’t be able to identify the perpetrators anyway.
7 Apr, 2022 at 12:57 pm
I wouldn’t be surprised if industry representatives had a significant-enough say in the Diagnostic and Statistical Manual’s original composition and continue to influence its revisions/updates.
Likely only a small percentage of physicians are integrating ACE-trauma science into the diagnoses and (usually chemical) treatments of their patients.
The pharmaceutical industry profits, of course, from the continual sedation and/or concealment of ACE-trauma’s SYMPTOMS via tranquilizers and/or antidepressants.
11 Apr, 2022 at 4:23 am
Awesome! 🙌
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