To be honest, when I was asked to write a bit about my situation, that is; what it means to find out I had two kids with autism, I was flattered.
Then I did nothing about it for well, almost a year, finding other things to do. I did a lot of filing, direct debits to be cancelled etc, I even went to the dentist for the first time in 5 years, and then I realised I was putting it off.
Why? I don’t really want to revisit that awful time. It is true that the harder you work, the luckier you get. Well I work very bloody hard with my kids and things really do get better every day. So keep reading……
But to describe what it was like to find out that I had two children with severe autism;
To paraphrase Oscar Wilde; to have one child with ASD could be misfortune, to have two looks like carelessness!
The other thing is; I don’t know how the story ends…….
When people read books about a struggle with disability, they want to know that the person who wrote the book has affected something of a miracle cure. People want to read that dolphins, dogs, light or sound therapy, bio medical, giving up wheat or milk or dosing up on the vitamins and minerals that used to be in our diet when we were living in caves , made all the difference.
They don’t want to hear that it takes a lot of hard work and motivation, it takes luck in meeting the right people and I guess a little bit of talent in knowing what everyone can offer you to get the best outcome for your children. And, being nice enough to get them to help you.
Being a sales rep’ in my former life helps. Persistence, tenacity, stubbornness. Being a bit of a girly swot at high school also helps. Being a front area manager at a popular American Hamburger Restaurant at the age of 16 has also helped. I am not sure that the Arts Degree I deferred from in 1987 could have helped. But I am pretty sure that a Psychology degree could have. Something which I kind of sneered at when I was in sales.
Having a brass neck and coming from a country where English is spoken as a second language by a large percentage of the population has helped and hindered me. I am a direct communicator, I like to say what I mean, people then know what I mean.
But I am easily confused by nuance and the talent of a nation of poets to obfuscate and confuse through language. A lot of the time I need Dur-titles, (like subtitles but for people who don’t “get things”) and I come out of meetings having to ask other people what was going on. But that could also be my autism. .
Whatever is eventually proved about autism, I believe that it is largely hereditary and that is perhaps the cruellest irony of all. That when you find out that your beloved children have autism, you also realise that your extended family are all so strange and dysfunctional that they are going to be no help whatsoever!
You yourself have to confront and manage your own autistic tendencies in order to parent your children honestly. And when they show characteristics that you have in common, forgive yourself and forgive them.
Autism is a wide wide spectrum. There are 18 million gazillion variations on the theme. And I believe these include Aspergers, Attention Deficit and hyperactivity disorders, Dyslexia, Dysphraxia, Obsessive Compulsive Disorders, Tourette’s Syndrome and what they call “Classic Autism”. I don’t know if I like that term. I think it should be applied to music not people, but you know what I mean.
Okay, there are people who develop aspects of OCD or ADD or Dysphraxia without the slightest hint of the classic symptoms of sensory distortion associated with Autism. So put away the Mont Blanc pen Mr or Ms Psychologist!
But when a family discovers that they have a child with a diagnosis in the spectrum, it can help to look back through the family tree to see if anyone had aspects of any of the above.
I also believe there is an evolutionary reason for the increase in the number of diagnoses of Autistic Spectrum Disorders in the last 10 -20 years.
For a start; we have accurate description and diagnosis.
Parents are much more pro-active around their kids today as we have fewer of them and have the luxury of obsessing about their development. When they don’t hit a milestone we are off down to the health centre to get referred. In the past with high infant mortality and low contraception, we had a higher birth-rate. If something was a little bit wrong, we were probably so busy with the other 9 kids that it wouldn’t be noticed and the child would just have to get on with it, perhaps relying on older siblings to compensate. If they had a more severe level of difference, they would be taken into the disability services, which in those days often meant the holy orders, forever. Mother and Father might miss you, but they had a lot of other children to raise and clothe and feed and life was much tougher. Survival much tougher.
It is excruciating to imagine the number of severely disabled adults who ended up in residential care just because they had autism. Even more excruciating to think that a lot of them are still there.
Going back further when we had to work together to gather food and huddle up together in caves to avoid predators, being different was bad. Being anti-social and uncommunicative threatened the survival of the tribe. Hunting, gathering and raising the young as a team was all important. The weak had to be left to survive on their own. This instinct survived well into the 20th century and there are many that believe that so called “wolf children” are just children with Autism or ADHD set loose to survive on their own by their harassed families.
But the genes obviously survived, and by the time Hans Asperger was doing his trials in post war Austria and Germany, (don’t even think about it!) there were enough super intelligent but highly anti-social young men around for him to come to the conclusion that there was a medical condition to be described. He didn’t name it after himself by the way, it was years later that some of the next wave of autism specialists described “high functioning autism” in this way.
The people with severe or so-called low functioning autism were not to be seen at that stage. OH they existed, but were not recognised as having autism, yet.
So here we are in the new millennium and with the help of many determined parents, all of whom probably have aspects of autism themselves; we have pushed through and forced the world to understand the difference between Autism and intellectual and or Psychiatric disabilities. And to force the world to recognise the potential of our children.