As I fantasize about a world in which autism is not consider a “bad” thing, but instead is seen as yet another type of neurology with its pluses and minuses, I continue to rewrite the “ideal introduction to autism” with the hope that one day this may actually be a parent’s experience. I can’t imagine what that would be like, but I know for a fact, it would be a hell of a lot better than the very real, very upsetting, confusing and painful introduction to autism that I was given almost ten years ago.
First off, the literature regarding autism… more and more there are books and blogs (!) written by Autistic people introducing the idea of autism as another kind of neurology with both innate challenges and wonders. I’ve listed many of them on the Resources page on this blog. As there were no blogs (written by Autistic people) that I knew of in the fall of 2004 I went to Barnes & Noble and bought pretty much every single book written on Autism. Some would say that was my first mistake, as I was greeted with nothing but gloom and doom. Other than Donna Williams and Temple Grandin, all the books were written by non autistic people about the dire, horrors of autism and what that meant for your child. (And none of it was good.) Autism was most definitely not something to celebrate.
The idea that autism could be seen as anything but terrible was not even a radical notion, it was a thought that hadn’t made it into the public sphere. When Emma was diagnosed the big names associated with autism were Andrew Wakefield, Jenny McCarthy and Bernard Rimland. It was impossible to read anything about autism without those three names coming up. Parents new to all of this, fumbled around trying to make sense of the various thoughts about cause, was it really an epidemic and how to best serve our children who were said to have been snatched from our protective arms. I’ve written about the depth of my fear during those first few months that turned quickly into years in numerous posts on this blog.
My fantasy is nothing short of radical, but perhaps one day it will not be seen as such, but instead, will be commonplace. My fantasy introduction to autism begins with the evaluation. At least one of the therapists who came to our home in September of 2004 would have been Autistic. Once it was thought my daughter might occupy a place on the Autism spectrum, more Autistic therapists, social workers and psychologists would have come to conduct the evaluation and talk to us. This, then, would have been our introduction to autism… meeting actual Autistic people, who are able to articulate what the challenges are and what the joys are! People who could offer a balanced view of a neurology that I would be able to identify with and see there was overlap with my own. People who would gently encourage me to review my own neurology and see that my daughter’s experience and processing of the world, while different from mine, has many similarities. People who could help me so that I was in a better position to be the mother my daughter needed me to be.
After the evaluation and diagnosis had been made, we would then be given support in finding at least a few Autistic people who were in the profession of working with families with Autistic children. In my fantasy, Autistic people would be among those creating schools, designing curriculums, teaching academics, conducting seminars for us, the parents of Autistic children, to attend so that we might better help our kids. It seems to me a radical shift in all aspects of autism, what is said about what it is to be Autistic and what is being told to those who are non autistic, needs to occur. My dream team would include Autistic and non autistic alike, but it would be a blend of those who presume my child competent, who treat my child with respect, who are interested in my child’s well being and want to work towards her strengths, encouraging her to be all she can be and cheering her on. 
Emma's Hope Book 
Ohhh Ariane, that would be a wonderful world. We need to have a school where we can actually educate more autistics in neurodiversity friendly environment to become social workers, therapists, special education teachers and more, much more. I have proposed before to start such an educational program, I hope it can become a reality. Our kids need role models in every walk of life so they can flourish and be all they can be.
A wonderful world indeed!
I just finished up my coursework to get my autism certificate (an add on to a teaching license). There were 5 classes involved, 2 that were general “special ed” and 3 that were specific to autism. NONE of these three classes had any information from the horse’s mouth, as I like to say. It was all info about autistic people by NT people. And we had to say “person with autism” because it was university policy. The classes were good, but they could have been SO much better if they had actual information from autistic people. It was like a bunch of straight people sitting down and discussing how gay and lesbian people should think/live/learn. (Please note that I have nothing against gays and lesbians. This was for an example only.) Anyway, yes, it would be wonderful if everyone’s introduction to autism could be as you described it. It would take a huge cultural shift for it to happen,though!
Exactly! Can you imagine taking a class about women, but that was given by men, all the material about women was written by men, all the laws regarding women, were created and voted on by men…. wait… that all sounds so familiar….
OK, that was probably a more appropriate example. I tried to bring in as much information from autistic people as I could (the teacher was awesome and really welcomed outside information), but at the core of it it was NT people talking about how to teach autistics.
No! I loved your example!! And your point is such a good one, Beth. Thanks so much for talking about it!
Please… I want to be in this world.
We still have some work to do…
But count me in!!
Leah
Ack… me too. Have I told you about the island I want to find?
Ooooohhhh… delightful! Let’s do it! Let’s choose a really big one and call it… hmmmm…. how ’bout “North America!!”
Yes, please. 🙂
Hehe 🙂
Our children so need role models and the message they are not broken. And we need to work on that message at so many levels. That is a wonderful ideal, Ariane. An experience that someday we can hopefully make a reality.
We need to work toward change by reshaping the education programs, not in the schools, but at the university training levels. What is taught in those programs affect our children. We spend so much time and energy doing battle to get the right teachers and to have the schools do proper IEPs etc., to find the right doctors and professionals, but most of the professionals were not trained to think about our children as competent, whole human beings. They were taught to see our children as broken, needing to be fixed or at least made to “function” to a predefined and narrow view of the norm. They see a problem first before they see a child or teen or adult.
Thanks, Ariane. You always make me think about things. It seems overwhelming all the changes that need to be made to make that world and that experience you describe a reality. I have to believe that we can make it a reality.
~D
Oh you are so right. The education needs to begin in the schools where people are going to later become teachers, pediatricians, social workers, etc. I am always amazed to hear what’s being taught, astonishing how far behind so many of these colleges and graduate programs are!
Hooray! Joining you in working towards such a dream!
Yay!
I’m just wondering… if autism is accepted as a nonpathological variation, would it really need to be “diagnosed”?
I think it would at least need to be “recognized”, because otherwise none of this assistance would be there. I don’t know. I think we may have to develop a new language in terms of the recognition, acceptance and understanding of neurodiversity.
🙂 tagAught
I agree. A new language, which has to begin with why the current language is so destructive.
In an ideal world accommodations would be given to any who needed them, but as we aren’t living in an ideal world, there would have to be some indication of what is needed, but I don’t see why it has to be done with the current damaging language. If I need to have a prescription for sleeping pills because I’m suffering from insomnia I don’t feel shame and guilt about having insomnia. Or xanax for stress or therapy to cope with past trauma etc. (I know I’m probably being incredibly unrealistic…)
I believe sometimes you and I live in a parallel universe. Did you receive Emma’s anxiety written email to you? It was mailed from her.
I didn’t get any email from Emma! 😦
Can I just say that Emma has a *wicked* fashion sense?
Oh I do love that photo! YES! She does… both the kids do… they must get that from their awesome dad!
Love this article! As an autistic counselor myself, I run a support and self-advocacy group for autistic adults. Instead of the usual deficit model, I prefer to use advocacy-oriented counseling, which emphasizes building on strengths, and empowerment. I ask, what are your strengths and how can we build on these to help you live a healthy life? Instead of, what’s wrong with you and how can we fix you? When people have problems, advocacy-oriented counselors also encourage them to see those problems in a larger societal context, instead of seeing problems only as caused by problems within the person. When I first began my career as a counselor, I started out using advocacy-oriented counseling with battered women, then with homeless people, those who are marginalized and oppressed in various ways by our society. I have found it works very well with autistic people (a marginalized population at this time!) and their families as well, but have met very few people in my profession who use this approach with autistic people. I’m trying hard to change that!
Wonderful to hear Debi!
My iPad is having temper tantrum. Pm with email address please…will resend.
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i too hope to live in a world where being different is not considered a bad thing I know that one day our fantasy will come true.
Reblogged this on Puzzles & Spoons and commented:
A very well written & touching blog post about one mother’s hope for her autistic daughter & others on the autism spectrum.