Recently I joined several autism related groups on LinkedIn, and the number of professionals in the autism world who are sharing their knowledge, and actively seeking to learn more, is inspiring. I’ve participated in several discussions where autistic adult professionals have shared their experience, perspectives, challenges, etc., and the reception they receive from those “in the field” is generally one of “tell me more!” It gives me a great feeling, because I have extended family on the spectrum, and knowing that there are professionals out there who are actively seeking knowledge to be supportive of them is very reassuring.
I read a post last week at Emma’s Hope Book’s blog – Picture Day Moments (please read) – and I felt a combination of sadness, frustration and anger at what had happened. What was additionally aggravating was an exchange in the comment section with an “expert” who had been “a professional in the field for more than 38 years”. This person basically minimized the feelings of Emma, the impact and significance of the incident in the post, the input of anyone else who disagreed with his blase attitude and lack of knowledge of – or desire to learn about – actual autistic experience (which you’d think he’d have a clue about after 38 years).
I am not a scientist, but I love and respect science. I understand the need for research and trackable data, especially in areas where we have difficulty understanding what is going on and don’t have as much information as we’d like – as with autism. But with the advent of the internet, and with advances in communication technology, there is a growing body of information written BY AUTISTICS. They speak of their experiences with social challenges, empathy, sensory sensitivity, stimming, self-injurious behavior, communication issues, bullying, depression, lack of understanding, medical challenges, marginalization, disrespect, abuse, etc.
It seems that most of professionals in the field of autism research, counseling, treatment, etc. are not autistic (please correct me if I’m wrong). In many cases, the theories/suppositions that I’ve come accross regarding autistic experience and behaviors often don’t match the ACTUAL experiences shared by autistic people. What IS surprising is the lack of respect and consideration that this first-person information often receives from some of the people who call themselves experts. I’ve witnessed this several times.
They ignore the input of or talk down to autistic people, argue with them about their experiences (?!?), and play word games or build false arguements to justify their position (see comments in Picture Day Moments). Should a non-autistic person disagree with them, they are subjected to the same treatment. I have personally experienced this. These people tend to be the ones who bring attention to their “expert” credentials repetitively, to the point of ridiculousness.
The true professionals I’ve encountered really listen, and are far less focused on how much they know and more focused on how much they can learn. I’m supremely greatful for these experts – they know that they DON’T know everything and continue to learn.
I can only hope that parents trust their gut and run the other way when they encounter the know-it-alls who disregard their input and the input of their children.