I’ve often wondered about whether it’s healthy for me to be so immersed in my son’s autism, and in autism in general. I write and follow blog posts about it, read books and talk about it, and live it whenever I interact with or think about my son. I know there is a point at which it is pathological; particularly when it means you’re not doing everyday things that need to be done, such as spending time with your spouse, getting outdoors or doing something nice just for yourself.
Soon after the diagnosis I did do this pathological version of immersion, and I didn’t learn a lot about my son or autism during it either. I didn’t know what books to buy, and I didn’t want to throw precious money at the wrong things, so I used the internet instead. Not a good idea. Not to say there’s anything magically good about using books either; there are poorly researched and potentially dangerous books out there about autism too. I thought I had good researching skills due to my academic background (and I do), but I was so desperate for answers that I wasn’t being as objective as I should and could have been.
A turning point in my (pathological) immersion was reading a book that had been recommended by my son’s developmental pediatrician, called “A Friend Like Henry“. She chose to recommend it based on my son’s type of autism; it’s not overly helpful reading all about Aspergers (at least to begin with) if your child has severe autism, even though they are both on the spectrum. I think that is key to where any parent with a newly-diagnosed child should start; ask the professionals in your child’s life what you should read. Then actually read it. She also warned us not to get caught up in the idea that having a dog (like the boy in the book) was necessary for improving our son’s condition. That might sound like a silly warning, but like I said, as desperate parents you can get quickly caught up in the search for answers and solutions; grabbing onto anything that floats when you’re swept up in flood waters.
The book gave me understanding and hope, two things in too-short supply when it comes to autism. But not false hope, which is an important distinction. Autism cannot be cured, the child will always “be” autistic, but you can make their life and your own life easier. It also warned me of what continues to be a very widespread truth; that you have to become a very active and determined advocate in order for your child to get the services and resources they need to do the best they can in life.
I also found that reading about an individual’s experiences with autism, rather than a generic “this is autism” book, was important. I’ve read plenty of material about what autism is and how you can make it better, but part of the struggle as a parent of these children is the isolation and feeling like no one understands that nightmare you’re living. Reading about someone else’s personal account can help you feel not so alone.
That too, is why all the autism immersive behaviour I do these days, is not unhealthy, but vital and important for my mental health: Blogging my experiences allows me to share my troubles. Every time someone shares their similar experiences in comments, or a friend or family member says they had no idea how hard it had been for me, I feel more understood and less alone.
The research I do for my posts, and reading others posts and material, enhances my understanding of autism, and indeed of my son. I am experienced enough now to know how to wade through the information so it doesn’t add to that sinking feeling. I have learnt to actually go all the way back and read original scientific studies where there are conflicting accounts of what they establish. Rather than making me feel like I am breathing autism day-in, day-out, it is instead helping me to find new ways to cope with what I have to deal with anyway.
I know my son is more than autism, I know my life is more than my son’s autism, but it is nevertheless a huge and important part of my life. I keep an eye out to make sure I don’t cross the line between research and growth, and pathology, and I think that is key here too: Awareness of the potential to sink into it too far. The advocate we have to be for our children, is helped by knowing our way through the mis/information. The sane individual in us, is helped by knowing where to draw the line.