I Used to Believe…

The degree of arrogance displayed by more than a few who claim to be “experts” with decades of hands on experience in the field of autism is absolutely staggering.  Their arrogance is only rivaled by their mindset of assuredness. They are unwavering in their absolute knowing about a neurology that continues to baffle the best neuroscientists in the world.  These practitioners not only speak from a place of “authority” they are imperious, contemptuous and profoundly scornful of any who suggest they might want to consult with a few people who are actually living their lives with the neurology these so-called experts claim to understand and know all about.

We have run into more than a few of these professionals over the years.  These are the people who fill me with fear.  They come into contact with hundreds and thousands of children over their decades of “expertise” and it terrifies me.  They win grants and are paid to speak at conferences.  Their opinions are sought by a great many.  They swagger about with their self importance, wearing their years of working with the Autistic population as though it were a badge of honor.  They think nothing of grouping an entire neurology into a small, convenient box labeled “autism”.

They smirk and posture and plaster their walls with their many credentials and degrees.  They make sure everyone understands exactly how many years they’ve been working in the “field.”  They say things like, “autistic children are…” accuse those they disagree with of “falsehoods” and go on at length about how they know what “autistic children” want, need and care about.  They are profoundly dismissive of those who actually ARE Autistic and who dare question or disagree with them.  Instead of listening to the very people they claim to know so much about, they silence with words of contempt.  They attack.  They strike out, bring in reinforcements of like-minded colleagues.  Sometimes they even target someone, almost always someone who is autistic, and try to do damage to them by contacting their employers, or those they have professional contact with.

I used to be shocked that such people would choose to be in a profession where the people they are supposedly wanting to help, end up being the very people they silence and hurt.  It used to surprise me when I would read comments by people who have no trouble using language either written or spoken to get their point across, dismiss and question someone who does not enjoy the same ease with which they do, to communicate.  I used to be naive enough to believe those calling themselves an “expert,” and had degrees suggesting study and dedication in their given field was further evidence of their title.

I used to believe in a great many things.

*This post is not about any one person, but about the dozens of people I’ve met over the years who fit the above description.  There are many people, both autistic and non autistic, who have dedicated their lives to autism, who (thankfully) do not fit this description.  They are open to new ways of thinking, they are actively listening to those who have different experiences than their own.  All of them are engaged in learning, discovering, uncovering more information and examining what they think.  They are operating from a place of humility, and to those people I am profoundly grateful.

Related posts from others:

Cart Before the Horse Research ~ By Michael Forbes Wilcox

42 responses to “I Used to Believe…

  1. It’s an unfortunately common human trait that when something is “known”, conflicting evidence gets ignored while the weakest of supporting evidence is seized upon to shore up an increasingly unstable structure until it collapses under the weight of its own contradictions. That’s when you get the seismic paradigm shifts as with climate change science and other fields of research. When experiences like Emma’s become widely known there must be a shift in public perception until the “experts” you describe here either change their views or get left behind along with believers in a flat earth.

  2. Wonderfully said. It is discouraging to have to fight against these people.
    I’m one of those who doesn’t get asked. I wrote about that, using one example that I think is quite typical.

  3. This doesn’t have anything to do with Dr. Enormous Penis, right?

    • She said it was about many people but as far as the latest I know everything so I will just visit your blog and be a rude and dismissive blowhard I absolutely believe that part of his anatomy would be huge. All the nutrients that should have been going to his brain the past 40 years have to go somewhere after all.

      I am not expert in anatomy of course..

      Overall there are too many people just like this in my life right now. If I don’t meet their expectations of what it is to have autism and they suck at their jobs it has to be my fault. They keep thinking we can just start fresh and move on from some events that are downright abusive so perhaps they studied under him and feel they can distract me easily from the magnitude of their sucktasticness.

    • Inspiration comes from a great many and in many forms…

  4. Experts are like in-laws. Take everything they say with a grain of salt and do what you think is best.

  5. Hi Ariane,
    21 years ago I started working as a volunteer with a family who went the “unconventional” route. Chastised and chastened, they now have a beautiful, strong, happy grown son. And, his mom, still my dear friend, is getting her PhD and helping families work with their kids as she did, as we did, hers. The bottom line of the home-based program was (and continues to be) acceptance, love, follow-the-child, etc… I’d love the opportunity to talk with you. I don’t feel like writing too much online, as it is too public for my comfort level. But, you know how to reach me. Much love to you and your family. Emma is absolutely incredible.

  6. Ah, yes! How many times have I encountered these know-it-all types! They appear everywhere – school administrators, adjunct professors for professional training in teaching students with disabilities, family (sad to say!)… I am sorry about your experience. It seems you are not alone! As a parent with children with learning disabilities and as an individual with learning disabilities myself, it is very, very hard to deal with people who haven’t experienced the same. Even worse, dealing with profoundly judgmental people is a challenge in itself. Hang in there, Ariane. You know your daughter best; and from the sound of everything you are doing a very respectable job. (Those expecting perfection seem to have forgotten that we are all human beings.)

  7. Have had the misfortune of dealing with this “professional” myself. I felt fear and dismay with our first encounter with this type, and I am still baffled and horrified when I see it. I have to be careful, however, as my personality and my job experience have inclined me to be rather forthright and that has not always benefited my family or others.

  8. The other end of the world….. And i meet the same thing!! I am learning who to ignore…

  9. This is so true. Sad and disappointing, too, once you realise this and know that you have to proceed with caution, as those meant to support you or/and your child may not be the allies they claim to be. What really fills me with dispair is the fact that quite obviously, not all parents see through the placative “competence” the titles promise and while the former generations of parents / Autistics had simply nowhere to turn to, the present generation – under the impression of getting the right advice, help and support, – will find so many Autistics growing up over-medicated, trained to pass, and pressed into judgements based on ‘behaviour’ without anyone really listening to them, and with no chance to reach their true level of competence, and more importantly, of happiness in their lives.
    Great article, once again.

    • There are little pockets where this is beginning to change, not nearly fast enough, or anywhere near the volume it should be…

      • This is true and blogs like yours with a large reader ship are showing this as a clear shift of what type of ‘awareness’ we all should be striving for. But those professionals you describe are well settled in their power position and too few people, individually or as a group, see what’s happening (to them). As I said, great post, so important!

  10. As a paraphrase of Jess bc im short on time….if someone claims to know the answers be VERY afraid (for the full version it’s posted on both my blog and diaryofamom 🙂

  11. #1. Just because…who is dr. Big p.?
    #2. My daughter remembers hearing she would be cured by the time she graduated high school…we have been having in depth conversations regarding what she thought she needed to be cured from and what was going to happen to her when she wasn’t.

    • Lol i wondered that too

    • A troll like person with a PhD who entered the scene in the post on Picture Day Moments with some epic bits of wisdom but in the end made really bizarre comments about his anatomy. Well not really more bizarre than his notion never wavered from in decades in the field that autistic children are often frustrated but easy to distract and forget quickly. Yeah right…

      He shows up as both Dr something or other and something ADHD but only worth reading for the context of when he started to take a beating. It’s fairly triggering if idiotic experts have too much power in any way.

  12. And ugh on ppl thinking they can just say whatever in front of ppl

  13. ((Ariane)) ❤ I will be sharing this widely! Thank you for all you do ❤

  14. Steve Saunders

    This has become so widely recognized, it has been encapsulated in fiction – http://escapepod.org/2014/01/25/ep432-inappropriate-behavior/

  15. I used to believe too then I went to a rtc and my therapist didn’t understand my autism they told me why I do certain things and constantly dismissed my feelings they ” knew” everything who questions the expert the person who got this two years of my life dictated my every move whether it was me being on communication block with all other students ( which is so dumb because they told me to share my emotions but then told me I couldn’t speak to anyone) or if it was having to sit in a mattress and do nothing for days to keep me safe either way they didn’t care about me who I was and isn’t any wonder that I don’t trust “experts” I believe lots of other autistic people can relate to trauma that others have so wrongly inflicted on us when we were already in the darkest of despair. I love you Emma I feel you and to all other kids, adults etc with autism verbal or non verbal whatever that means I feel your pain and I’m making it my life’s mission to change the way people see us 🙂 hugs all

  16. Seems opportunities for power (over other people) attract personality-disordered individuals, or (darker, much darker) bring out the innate and instinctual tendencies a lot of people seem to have to act as if they were diagnosable that way. The behavior you describe IS that of Narcissists and/or Psychopaths (as to quality, at the least. It might be less as to quantity, or more-or-less selective in its application.)

    The question I have is “do these stinkers do this around certain people only, or is the matter a general thing with them?” Granted, they may more or less limit the bulk of their interactions to those they can suitably ‘impress’ and ‘control’, so it might be difficult to discern this matter.

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