Autism “awareness”

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 2^nd 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!

STOP Autism Research (There’s a BETTER Way)

The video says it all. There’s nothing more I need say. (Turn on closed captions if you have a hearing disability)

Not knowing what you don’t know.

Lyric Holmans has released a Youtube clip explaining why she finds people overwhelming. You can view the clip and read a transcription on her blog. Like her, I find people can be overwhelming, and the reasons are similar – non-vocal communications.

While humans may be the only species to have developed a language, all vertebrates and many invertebrates communicate in various ways with their own species, and to a lesser extent other species. And while non-vocal communication may take second place to spoken (or written) communication in humans, it remains an important factor in our everyday communications.

For the first 60 years of my life, I was totally unaware that language (spoken or written) was complemented by other forms of communication, namely body language and facial expressions. I’m not alone. Many people don’t realise that body language exists, but nevertheless, they use it and read it every day. It’s instinctive to them. For many autistics, including myself, its not. Hence the title of this article.

During those first 60 years, I was able to read body language in domestic pets – better than most people in fact – in babies and to a lesser extent, toddlers. But apart from the way lips form with a smile or laughter I was unaware that the face, especially the eyes, can convey a whole raft of emotions and ideas. Even so, I was unable to distinguish between a grin and a grimace. I was completely unaware that humans also used posture, movement of body and hands, even vocal pitch and volume to supplement the words they use.

Now that I do know that a significant part of human communication is non-vocal, I’m able to look for it, and that in itself can be overwhelming. In the first place, making a conscious effort to look for non-vocal communication requires effort, so much so, that sometimes I forget to listen to the actual words being spoken. And then I’m always asking myself whether or not a particular facial or body movement is indeed intended (intentionally or not) to communicate something. And if it is intended to communicate something, what exactly?

I managed to survive the first sixty years of my life, more or less intact, not knowing that body language and facial expressions play a vital role in interpersonal communications. I’m yet to be persuaded that knowing it exits at all, let alone its importance, makes my communication with others, as individuals or groups, any less overwhelming. In my case it might actually make it more so. Group dynamics is another mystery to me (Lyric touches on it in the post linked to above), but that’s a topic for another day.

ABA Therapy and PTSD

Think about it: almost half of all autistic people who undergo ABA “therapy” suffer from PTSD. As a follow up to yesterday’s post on the abusive nature of ABA, I recommend reading the following article:

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The “New ABA” is still all about compliance.

I was called “unethical” by a professional colleague today.

The reason may surprise you—I said “ABA is abuse”.  My peer was naturally taken aback because they are an SLP-BCBA and “would never dream of abusing a child.” I always find this rebuttal interesting because we usually don’t hear about people walking around admitting to abusing people; even overt predators somehow convince themselves that they are helping their victim. The sanctimonious SLP-BCBA told me that it was the “old ABA” and not “new ABA” that was harmful, and then only a small fraction of the time.  She accused me of “throwing the baby out with the bathwater” (I still don’t really understand how this idiomatic expression applies here) and she further went on to insist that there is “no way ABA could cause PTSD in people with Autism.” (She really meant “Autistic people,” I am sure.)

Humans have an amazing innate response to survive when they are faced with a threat or danger, fight, flight, or freeze. This is an automatic nervous system response. The fight and flight responses are triggered by the sympathetic nervous system, and the freeze response is triggered by the parasympathetic nervous system. Both of these systems combined make up the autonomic nervous system (ANS). When one of the responses is dispatched the human body simultaneously releases adrenaline and cortisol. If the ANA is only triggered once, for example maybe you almost rear-end someone while driving, your body would typically return to a calm state in 20-30 minutes. But, when the ANS is repeatedly triggered without time to regulate and return cortisol levels to a manageable level, what results is trauma-induced post-traumatic stress disorder (PTSD).  (Cleveland Clinic, 2019)

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Visit the Therapist Neurodiversity Collective website to view the rest of the article

Autism: How to be normal (and why not to be)

This being autism awareness month, you’ll probably see me posting more articles about autism than normal. I make no apologies for doing so.

The following heartfelt Youtube video is from a TEDx presentation by a fellow autistic, Jolene Stockman. Her experiences very much parallel my own, apart from learning to drive (I found it easy and enjoyable) and the age at which being autistic was discovered (60 in my case).