I think I want to get a cat and name it Autism. Then I’d be a family with autism. Or, maybe I’ll name it Depression and be a family with depression. Mental Illness might be another option, so I can say, “I’m a family with…”. These ideas do not come out of nowhere. In their policy platform around autism, the Ontario Progressive Conservative party uses “families with autism” when talking about funding. Messaging around mental illness often frames it as something that families and friends have along with the person who is dealing with mental illness. Unless each person in the family has it, then they as a collective do not “have” the mental illness, the depression, and no, the family itself is likely not autistic.
To be clear, mainly because I know I’m going to get some people’s backs up about this, all of these do impact friends, families, and loved ones. I’m not saying they don’t. The problem is that framing mental illness, mental health concerns, autism, and disability in this way invalidates the person with whichever condition or situation applies. This way of framing it can, and does, result in the person with specific needs not feeling able to talk about it.
A prime example is me. I myself feel I have to justify my lived experience in order to make others not feel uncomfortable. I encounter the same when I talk about trans issues and needs. Instead of raising up those who need supports and encouraging people most impacted, they are being silenced. I will not let it silence me.
Much of the language around autism centres on the needs of the family. Therapies recommended to familiesare about having the person fit in to society as a normal, functional person. For other mental illnesses and mental health conditions it is much the same.
In the realm of autism, the voices that are amplified and heard are those of parents and caregivers—the families with autism. The voices of the people whose lives are impacted the most by whatever treatment methods are applied are not amplified; they are silenced. They are the ones who need the supports. The focus seems to be on making life easier for the parents, families, and teachers.
I, for one, find myself somewhat glad I didn’t have a formal diagnosis at school. It would have been a different kind of hell than the one I experienced. My parents managed as best they could, and in a couple of schools I had supports that I needed. Reading about and seeing explanations about ABA and other methodologies, I know they likely would have killed me. Much like reparative therapy kills LBTQ teens and youth.
When I talk to friends and people I know who have autistic children, the overwhelming feelings that get communicated to me from them are related to supporting the child. Ways of making life better, figuring out healthy coping mechanisms and not trying to make the child normal or forcing any expressions of sensitivity out of them. Why don’t more organizations, and funding models, reflect this and work with people in this way?
How can we improve?
First, think about the language we use and how it lifts people up or holds them back. Whose perspectives does it highlight? If the discussion is about therapeutic options and funding, is it focusing on the needs of caregivers, or the individual receiving the therapy?
Second, is the article or item written by a person who has lived experience? Were there any people with lived experience involved in the policy development? For example, for autistic programs, all too often no autistic people are in any decision making position. Same with transgender policies and practice.
Third, and this is one that I constantly have to remind people about, when someone most impacted says that something is a problem, do not shut them down. Pay attention to what they are saying and do not try to explain their own experiences to them. Often they have taken a lot more time to research the topic than you might think. This can be particularly true in the case of autistic people with hyper focus and attention to a specific interest.
Fourth, if you are able, work to improve representation and amplification of the voices that are not heard. Ask organizations why the people they are purporting to help are not adequately represented in the organization. Pay attention to how decisions are being made and who is making them.
Fifth, step away from social media, take a break, have a cup of a relaxing beverage. Relax. This applies to all of us, and especially those of us who are most impacted.
We can all do better. We can, and must, remember that mental health, autism, and disabilities are not about those around the person experiencing one or more of these things. We probably shouldn’t name our cats, “Autism,” either.