Which, pro-ABA/IBI people don't like, cause the parents have been told that this is the only thing that works, and the professionals, well, they have an industry, even if they mean well, it's an industry that causes harm.
Anyways, the reporter of the article was looking for autistic points of view, and found me. I prefer email interviews, which has upsides and downsides. Downside, no nice sound-clips to put on the radio. Upside, despite only having a couple of my sentences actually used in the article, I have the entire email interview to post.
I understand that the reporter may not have had complete control of the editing process; pictures and stories of children sure are more appealing than those of a 31-year old autistic woman, after all. But I like being fully represented, signed no documents to keep the interview quiet, and so I retain my rights to publicize my side of the interview.
So. Here is the article that was published by the Toronto Star.
And here is the complete interview that I gave them:
You wrote that autistic narratives and issues are being completely overlooked in the discussion. Can you elaborate on what is being left out that most concerns you?
1) In Canada, there has been a silencing of autistic narratives. It’s subtle, but it’s there. It can be seen with how there are barely any services for autistic adults, for autistic women. It can be felt with our absence in discussions about our lives, our past, present, and future. But autistic people notice it acutely, as this absence affects our lives, in the supports we receive, in how organizations and support staff treat us. And the only real cure for this is for us to a part of those discussions, part of the decisions made by support organizations and provincial committees, to have our voices and narratives be included in all the ways that affect our lives. To put it simply, I am a Canadian citizen, myself and other autistic people want to be part of the process in shaping our futures in our nation.
Do you have an opinion about ABA principles or IBI, and the belief expressed by many parents that their children's futures depend on intensive behavioural intervention?
2) There are two problems with ABA and IBI; that it is the best chance for an autistic person’s future, despite a lack of scientific and ethically sound evidence, and that ABA/IBI principles are based on wrong assumptions regarding behaviour and autistic people. ABA/IBI is based on behaviourism, which states that if you change a person’s outward behaviour, you change how a person thinks. It was this same premise that created gay conversion therapy, also by the creator of ABA/IBI, Ivar Lovaas. We no longer think of autism as a mental illness, knowing that it is neurological wiring, how our brains work, but the premise of behavourism still remains in ABA/IBI. Thus, ABA/IBI doesn’t really teach life skills, or offers the best hope for an autistic person’s future, but teaches that our behaviour, our way of thinking and acting, is wrong and must be eliminated, often with a lot of traumatic stress. The accounts of autistic survivors account for a large percent of PTSD caused by ABA/IBI therapy throughout their lives, and the fact that these narratives are ignored does a huge injustice for the survivors, present autistic children, and future autistic people.
But autistic children are given poor prognosis, with claims that ABA/IBI is the only chance they have, when, quite frankly, this just isn’t true. So the decision about ABA/IBI in Ontario has mixed results; a decrease in focus on ABA/IBI, and some encouragement to look into other supports and approaches for autistic people.
What are your thoughts on what the provincial government's priority should be when it comes to meeting the needs of children with autism and their families? Can you talk about your own experiences -- what supports you think were most important as a child, and what would have helped that you didn't receive?
3) (tying in a little from above) What the provincial government’s priority, and all service providers, need to do is look into services beyond ABA/IBI. It does not help that a lot of current research is into what causes autism, and few little is researching what helps us throughout our lives. Listening to what autistic adults say about what services we need as adults is one of the steps to providing supports for autistic teens, children, and elders. I would like to see more supports for non-verbal communication, in conjunction with mental health and emergency services, as well as dealing with issues about racism, violence against women, and poverty, as a start. Ideally, the supports we receive as children should transition with us into adolescence, adulthood, and into old age. Yet, there are hardly if any services for adults, and they do not support the full range of abilities and impairments that autistic people have.
Do you have suggestions on how to better include the voices of Ontario people with autism on this particular topic and in media stories? When we're talking about the specifics of IBI this can be challenging, as older teens and young adults who have experienced the therapy aren't always able to recall the experience or express how it affected them
4) When talking about autism, parents and professionals are usually the ones taking the stage right now. However, I think there is a huge disservice by not including the voices of autistic people, in government decisions. Parents, professionals, and other caregivers want what’s best for their children, whether age they might be, but it is autistic adults who can say “this was harmful for me, these other supports are more appropriate” or “making these changes to a classroom would have helped me”, because we’re the ones with direct experience. It just makes sense to ask willing autistic people for advice on what needs to change in policy and practices. And for this to happen, people also need to be open to various styles in which someone’s narrative is expressed, not so much dependency on speaking, but valuing other methods of communication.
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