I’m a self-diagnosed autistic adult with a formally diagnosed autistic child. I spend a lot of time pondering if should I seek formal diagnosis. No matter how hard I try to trust the knowledge I now have from reading books and a lot of stories from other autistics, I doubt myself sometimes. Because not having a formal diagnosis makes me question myself every time something happens that could be interpreted as a sign of me not being autistic. At least once a day I have to look at myself in a specific situation from many perspectives, twist and turn my observations of my behaviour, my feelings, my thoughts, my sensory reactions and what not from as many angles as possible. I always end up with strong arguments for me being autistic, and then there is a new situation and I’m going though the same process again. This daily scrutiny of myself is not very pleasant, it’s energy consuming and frustrating. I ask myself if a formal diagnosis could take the burden off my shoulders.
So why don’t I just seek formal diagnosis? Besides from reasons concerning me, like that I know from my ADHD assessment how demanding it was and now my condition concerning other illnesses is even worse, I’m worried about how it will affect my child.
It’s hard enough as it is today to resist all the pressure of putting my child though ABA. Professionals from everywhere are trying to push me to put him in ABA, and threatening me and my partner about how bad his life will be if we don’t. No matter our arguments against it, no matter how many stories from adults who had ABA as children and are feeling very bad about it and even have PTSD, no matter how many solid arguments I present to show that the scientific evidence for how great ABA is is very biased, not matter what I say or do, the answer is always the same: ABA is the only scientifically proven method for autistic children. Period. Trying to explain that I don’t want tro try to erase my child’s personality and make him appear more neurotyplical is like talking to a wall. They look at me like I just said that I keep unicorns in my home.
It doesn’t matter what I say, my knowledge and perspective isn’t considered valid. It’s enough that a lot of the professionals know that I have ADHD to make them stop listening to me. What will happen if I’m formally diagnosed as autistic? I doubt they will listen more to me. In theory, I could be considered more of an expert, but regarding how autistic adults are treated by professionals I have strong reasons to believe that they will listen even less. I see how autistic adults are being belittled by professionals in discussions, how they are considered not autistic enough for their experiences and knowledge to be applicable or too autistic too understand what’s best for them.
What will happen if I’m not considered to be a good parent for being autistic and refusing to put my child through ABA? I don’t even want to answer that.
So no, I won’t seek formal diagnosis. Self-diagnosis is valid because I have to stay away from a formal diagnosis in order to protect my child.