I’ve been a parent for nearly twenty years and had my children assessed and summed up, and I’ve listened to many different approaches and opinions about their educations and development, about their attitude and their effort over the years. It’s not been consistent and, like most parents, we’ve learnt from the experience and ended up making up our own minds about our children. We are grateful for any information, we appreciate any praise, we smile politely at any advice, and we take what we can from it and discard what we believe to be misplaced or misjudged. We can see how we are not all always seeing the same child when we talk about one of them. In the past I’ve heard a couple of adjectives applied to my children by teachers that have really surprised me and which I’ve known to be false.
But this is the first time I will go to a parent-teacher meeting knowing that I have Asperger’s and knowing that my child may well have inherited those particular genes. That knowledge throws a whole other very significant ingredient into the mix that is our child – and perhaps our other children.
My children will carry my autistic genes. Of that I am sure. Any or all of them or none of them may have their own version of autism. They may simply carry some genes. Without formal testing I may never be one hundred percent sure about any of them. For now, all I have is a big bag of new knowledge and my powers of observation, and one heck of a lot of information under my belt after an incredible amount of delving, reading and paying attention to the world of autism. So far our middle child (our son who is 17) doesn’t seem to have my anxiety or my fears, but both our daughters have shown signs of inheriting my anxiety and some of my sensory processing difficulties and they have all three thrown up some interesting questions about the ease with which they can be squeezed through the narrow tube that is conventional education. It’s too late for me to discuss our elder daughter’s education with anyone now that she is nearly 20 years old – all I can do there is let her know that she carries my genes and has a chance of possessing many of my traits (which are not all bad, I’d like to point out!) but it is not too late to consider what part (if any) autism might be playing in our nine-year-old’s education and childhood.
What I’m wrangling with today is just how far that considering goes, and with whom to consider it. Do I wait until a problem becomes too great, until some sort of crisis occurs? Do I keep quiet and hope she “gets away with it”, “pretends to be normal” and hope she learns to shrug things off? Do I assume her father’s non-autistic genes have watered down mine sufficiently for her to be pretty “normally-wired”? Will she muddle through until fifteen until suddenly one day a teacher calls her “difficult” or “impertinent” or another child bullies her and by which time it may be too late to discuss Asperger’s and she may hate me for trying to? I remember how I felt about being told I needed glasses at fifteen. I really don’t think I would have coped with being told I had Asperger’s at that age. I’m sure I would have rejected it and hated anyone who tried to discuss it.
From my experience, nine is about the age difficulties begin to trickle in for a high-functioning autistic/ Asperger’s child, and it might be when differences start to be less forgiven by other children and even by teachers. I also know that outsiders can often be quicker than a family to spot differences – after all we are used to our own children. It’s also about the age we notice differences in ourselves, and that can cause us to crave to fit in and therefore become quite secretive about our worries. Fitting in and not being noticed are extremely stressful and hard work and I worry about the long-term effects not just of that fitting in but also of the repeatedly being misunderstood. My gut instinct is that my child has enough of my traits for her to find certain areas of life a bit more of a struggle than other children and that this might become distressing in her teens but that she hides them well now and will never have serious enough problems for teachers to think to consider autism without knowing it is a possibility. I also feel that if it is going to be discussed, sooner is better.
So today I am planning to plant a seed. I intend to merely mention to our youngest daughter’s teacher that I have Asperger’s. I’m actually quite scared because I hate talking about myself.
I want, while our daughter is at a school small enough and far enough away from the stresses of more serious formal learning in the future, for her school to know about the genes that she comes from and be ready for any challenges or fears she may face. I can’t guarantee their knowledge of autism will be vast enough to know what they are looking for. I can’t guarantee it will mean as much to them as it does to me. I can’t guarantee they will use Asperger’s as a potential lens to view any troubles or concerns (if indeed there are any). And I can’t guarantee that I will ever get her a diagnosis if one is needed in the future. But a huge wave of meaning came over my life with my own explanations of my difficulties and it would be unfair of me to deny my children that opportunity. And not only my own children but the people who are in a position to provide support. Maybe they’ve already struggled to fathom my child and this will throw new light on their understanding of her.