I coloured my world all the shades of guilt during the months after my son’s diagnosis. I used the classics (“did I do something wrong during my pregnancy, did I cause this with vaccines?”) and threw in some extremes too (“it’s my fault he’s alive, so it’s my fault he’s autistic”). But the most enduring guilt I carried for a good year or so, was that I didn’t get it diagnosed soon enough, and wasn’t doing enough since getting the diagnosis. Specifically, I had taken seriously the idea that early intervention was absolutely critical and that if therapies weren’t underway before he was three, then it was already too late.
I knew something was wrong from much earlier than three years old, but I had done some research, narrowed it down to autism, and had read that autism wasn’t typically diagnosed until three years old, and that attempts at doing so earlier could lead to an incorrect (or negative) diagnosis which could be a costly and time-consuming mistake. So I did what I thought was the right thing, and I waited.
Turned out I was wrong. (Hey guess what, the internet is not your best guide to autism..!)
Not only was I wrong about it not being able to be diagnosed until a child was three, turns out that leaving it that late was going to severely hurt his chances of a normal life (apparently). I kept reading about how crucial early intervention was – a message backed up by the therapists we worked with. Made all the worse by how many months it took between diagnosis and the therapists being free to take my son on as a client.
Once the therapies were under way, the message of “do more, do it quicker, hurry it’s really too late already” drove me to push myself to my limits, and then feel all the more guilty for not being able to push myself further. So many times I sought reassurance that it wasn’t too late for him to develop language or a bright future, and each time I just got the same repeated messages “early intervention, earlier the better, long-term prognosis dependent on earliest possible intervention”. Hurry. Hurry. Hurry.
I would be exhausted, in tears, angry, sad, defeated from trying so hard to do so much, and all the time feeling guilty for feeling that way. Each day felt like a ticking time-bomb that I had to utilise as much as possible. Any time I stopped to take a break during the day, I soon forced myself get back into the fray. I’d argue a lot with my husband that we shouldn’t be taking breaks, each hour mattered. It put a rift in our marriage while he tried to stay sane, tried to help me stay sane, and I wouldn’t let us take the breaks we needed so much.
Turns out that early intervention is a nice idea, and can sure be helpful, but it is not the ultimate predictor of future success that I’d been made to believe. It is essential that the parents look after themselves for the health of the marriage, the child, the family as a whole. I had been risking all of that, under the mistaken belief that I’d done everything too late. Driven by guilt to try to catch up on the impossible.
If there’s a moral to the story it is this: It is never too late to improve the life and future of your child. You are very likely to experience guilt for not doing more, and doing it sooner, regardless of how soon you identify autism. Those feelings are perfectly natural. Don’t feel guilty for feeling guilty (yes, that is possible)! Just remind yourself that a vital part of doing the best by your child, is looking after yourself in the process. You soon learn to not let autism rule your child’s life, it’s important to not let autism rule your life as a parent either.
An excellent article pointing out that early intervention is not the be-all-end-all: Early Intervention and Autism.