A close friend of mine is facing the arduous road to an autism diagnosis. I say arduous not because of the outcome, but because of the emotional hits you take on this journey. I want to help her remember along the way that her boy is much more than the sum of his challenges. The road to diagnosis is so very hard to overcome. The problem is that we are forced to spend so long focusing on our children’s deficits, and we are left feeling bereft, inadequate and overwhelmed.
Years after receiving our diagnoses and having to walk this path, I am a firm believer that we need to focus on our children’s strengths, and work with a strengths-based model rather than the deficits model that is more widely employed.
I also believe that we need to better support parents in their journey along this path, and to help them remember all the beautiful things about their children.
A couple of years ago I wrote a letter to the mum of a newly diagnosed boy who I met through a mutual friend. She was struggling with it all, and I recalled that feeling well. I’d like to share it with you (name changed to protect identities etc).
We’ve only met once or twice, and we don’t know each other very well, but we know a lot about each other that counts.
When my boy was first diagnosed, I remember feeling completely overwhelmed. I wondered how could I be responsible for giving him what he needs. I didn’t even understand what he needed, much less how to give it to him. Information was sparse from health professionals, and I sat there reading and reading late into each night, and not feeling any better prepared to deal with the road ahead.
I doubted myself, our ability to cope with this and felt scared and swamped by the demands on me. I was physically and emotionally exhausted by the time we reached diagnosis – I had a new baby, I was my son’s kinder aide, I was alone with the kids 12 to 14 hours a day, every day, and both our families were completely and utterly unsupportive.
If I could give my then-self one piece of advice, it is what I give you, now: you are enough as you are. You don’t need to be anyone else. You are everything your child needs. All the skills you will need to give him the life he deserves you will learn slowly, piece by piece.
It is a marathon, not a sprint.
Above all, your boy is still your boy. If you take this piece of him away, he will be someone else entirely, and that would be a tragedy.
Love, hugs, and support.