As autism parents we are living in a parallel, isolated universe that longs to be a part of society and be accepted therein, just as we are, with our amazing, challenging children. I am Mum to four children, 3 birth, 1 adopted, three with ADHD, two autistic.....all high functioning so they can appear much of the time, to be just like everyone else around them.
As parents, rejection and judgement, especially on a mass scale like we have seen in The Mail and The Times (8/9.02.18), only adds to our sense of isolation. These articles told us, “Many parents want them to be labelled autistic……just to excuse their own failings” (Daily Mail) “Autism is vastly over-diagnosed. It’s the parents’ “way out”,” and “a diagnosis is like a badge of honour” (The Times).
Where to begin?? Many of us have given up jobs, experienced failed marriages, sat with our children on suicide watch not knowing if our young would make it through to adulthood. Many of us have dressed the wounds from a hundred self-harming cuts or prayed for our child to eat something/anything or stayed awake all night because our children simply don't/can’t sleep. We have been buried under a pile of legislation, paperwork and tribunals. Many of us have waited years for a diagnosis, years to access services, years to find a school that works and fought countless battles to win a morsel of adjustment for our children. In this process we have stretched ourselves out of all normal parenting shape in order to meet the significant needs of our beautiful children.
Neuro-science shows our children are wired differently and as with all human beings, the outworking of this shows itself uniquely in each person. My autistic children are clever, creative, funny, one has world-sized empathy, the other very little. They both carry huge anxiety, which presents itself in different ways. One holds it all in until she turns it on herself, the other explodes frequently. One sleeps like a log, the other rarely sleeps. One requires gentle handling, the other firmer. One is desperate for strategies to help her stay alive and positive, the other doesn’t care about living right now. We are micro-adjusting daily to get the best outcomes for them and from them.
My husband and I run a parent-support group for parents of HF autistic girls. We have over 75 families. Hand on heart I can honestly say I have never met a more committed, passionate-to-learn, flexible, adaptable, loving group of people.
We have all learned so much and still have so much to learn. Some of us are considering the next stage as we realise we are getting older and our children will not grow out of autism. We have to make plans for when we are no longer here.
In all of this we have encouraged our children to be proud of being their autistic selves. A label is only a problem if you have a problem with the label. Having an autistic child does not give parents a "badge of honour" as The Times/Mail suggest. We are however very proud parents and in so being we are understandably reluctant to wear your badge of shame.