Autistic parenting an autistic child
Being an autistic parent, to someone who may also turn out to be an autistic little person can be really hard.
Since M was a baby, I have picked up the subtleties of his way of being that whispered to me about him also being somewhere on the spectrum. When he was a baby he refused to sleep when I put him down any so I carried him everywhere. The comments I recieved were generally unsupportive, “…he will never go to sleep if you don’t leave him alone.” Imagine then how it felt to discover that he has his own sensory needs, including a high level of sensation seeking in order to keep himself regulated.
This was only the beginning…
The lack of authority the voice of a parent has, even within their own family, when they are trying to seek out support for a child has astounded me. The feedback I have recieved in the last four years around M’s own neurodiversity has ranged from suspicions that I was making things up or imagining them, through to the idea that he was simply copying me. The idea that an autistic person, who is also his mum, has no idea about how he experiences the world simply shows how ingrained the undermining of neurodiverse voices are within social and family life.
The same people have now started listening (kind of, but they have also just changed the unsuppportive narrative to fit the new set of facts), but only after I have spent a fairly large sum of money on a sensory assessment and specialist eyetest for him. Many autistic parents and autistic people simply do not have access to the personal resources that I am able to draw upon. M has, now, been put forward for an autism diagnosis which I am not really sure is a blessing or a curse. I guess for me, he can eventually choose whether or not to identify with ‘being autistic’, or alternatively simply being neurodivergent, but for me it all boils down to him being able to access support that he needs in a timely and appropriate way. The worst thing I coulds imagine happening is him having a crash, emotional or educational, like me or his dad experienced and having to wait for months or even years to get the support he needs as a young person or adult. Services for autistic people who can mask better are so poor as to be non-existent most of the time, so I would rather take advantage of the additional opportunities to develop his own and my understanding as early as posible.
Ultimately though there is a huge moral cost to seeking a diagnosis for another human being. Either way, there are long term implications for him and his life. There is a huge weight of responsibility around being a parent anyway, but to associate him with a diagnosis which is still so stigmatised and poorly conceptualised is an incredinly hard thing to do. I can only hope that when he is grown we have moved on from considering autistic differences to be pathological, particulary given the strength of alternative frameworks such as those of monotropism or the ‘double empathy‘ concept. I know I am going to do everything I can to make this happen.
As a researcher, I feel like it is, intellectually, the wrong thing to do. As a parent, knowing the amount of support and scaffolding M needs at home dealing with the regulation issues and consequences of masking all day at home and with other people, I feel like it is the right thing. I guess that I just have to let me heart and the research guide me.
Ultimately, if he has no diagnosis and needs support he is really up shit creek. If he has the diagnosis and we can put support in place early, hopefully he will be able to avoid most of the issues that his dad and I have coped with. Most importantly though, I want M to have as much time as possible to really know himself and be able to answer, with a coherent reason and confidence when people ask him why he does the things that he does.