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Autism, my family and me

Marcel never really learnt to walk. He just progressed from crawling to suddenly tearing around the house. There wasn’t really an interim stage where his parents could start baby-proofing the house ready for an unusually tall one year old who could now get to a whole new set of exciting, but really rather hazardous places. Marcel was slow at first but after a few months he had mastered the runner’s lean and was lifting himself onto his tiptoes to run to get more speed. He could run for literally hours, only stopping to refuel and have the occasional nap. He never really cried or made a sound, he was just a ball of energy with a mop of blond hair, big blue eyes and a ready smile.

Marcel is my cousin’s oldest child and my godson. He is three years old, just about to turn four next month. He lives in the UK and so should be starting school this coming September. But there is a problem, or rather, a bit of a stumbling block. Marcel still isn’t speaking. He hasn’t uttered a word. His nursery recommended a speech therapist but no progress has been made. Doctors have ascertained that he isn’t deaf and there isn’t a physical reason why he can’t speak. So, his mum and dad were left with a bit of a question mark, which a diagnosis of Autism has finally replaced.

Autism does run in our family. One of my brothers has a mild form of Aspergers and I myself, although I have never formally been tested, have been told by various medical professionals and psychologists who are friends of my parents that I also have a mild form of Aspergers. So really, Marcel receiving an Autistic diagnosis should come as no surprise, particularly as, on reflection, he has been showing signs for a very long time. His lack of speech is partnered with a very strong aversion to certain foods and and incredible fastidiousness when putting away toys. I once spent a full quarter of an hour with him, righting the lid of one of his puzzle boxes. The running, which we all looked on so fondly and with some sense of humour, now has a slightly ominous undertone. He runs the same circuits around the lounge, repeating the motion over and over and over again.  But even though we were half expecting it, it still isn’t pleasant.

Marcel’s Autism is far more severe than my brother’s. Whereas my brother can communicate, Marcel cannot. In time he may be able to communicate in some form but the general expectation of all the medical professionals involved is that his speech will never be quite ‘right’ if he will have any at all. Certain people with autism will have enhanced IQs. This may still be true for Marcel but it is likely it won’t be. His inability to communicate will hold him back either academically or socially. This isn’t the only challenge he or his parents will face.

In the US the annual cost of autism therapies and treatments can exceed $60,000 per year. The lifetime cost to support an individual with autism is greater than $3.2 million with the majority of autism treatment options not covered by insurance. This, quite frankly, is appalling. A parent of an autistic child has enough to worry about with wondering if they are healthy, happy and able to communicate their needs and express themselves, without wondering if they will be able to pay the bill for their care.

The UK isn’t exactly the most welcoming place for autistic children either. Research published in the Archives of Paediatrics and Adolescent Medicine, estimates that over half of all teenagers with an autism spectrum disorder are bullied at school, five times the amount of all other children. What is even more disconcerting is that this problem isn’t addressed. Either this is because of a lack of understanding, from teachers, about how to handle the behaviour or it is because of a seemingly widely accepted, let ludicrous, notion that if you have any form of disability, being picked on in some form is bound to happen. Que sera sera and all that. Buck up and shut up. I have often wondered why my parents never sought a formal diagnosis for myself, but on reflection the treatment and indeed preconceptions that those with Autism face are often far from fair. Maybe that played a part in their decision?

Changing how Autism is viewed will be a long road. It starts with funding for research and education. An estimated 600,000 children and adults in the UK are affected by Autistic Spectrum disorders with a quarter of those unable to talk and 85% of those not working full time. The London School of Economics estimates that Autism costs the UK more per year than heart disease, cancer and stroke combined yet receives a mere £4million per year on research, compared to cancer (£590m) heart disease (£169m) or stroke (£32m). However there is a fundamental imbalance between the amount the UK spends on research and the amount it costs the economy.

Marcel’s future isn’t necessarily bleak, it just looks a little different. No doubt he will experience challenges in life that some of his peers may not face and his parent’s will face their own troubles as well. They will have to fight for him for the rest of his life. They will have to fight for his right to an education in an appropriate setting (whether that be mainstream or specialised), for support at home, for necessary therapies and, ultimately, for continuing care as he becomes an adult. Basically, they will be battling bureaucracy. Marcel’s mum has given up her work as a physiotherapist in order to try and get Marcel the best start that she can. This has obviously put a huge financial strain on the family, particularly when the additional therapies and consultancies that Marcel, even at this early stage, is beginning to benefit from are rather costly. The largest costs of autism are during childhood. These are accrued by special education and lost earnings by parents. For adults with autism, the highest costs come from residential facilities and the lifetime loss of earnings from the autistic individual. All told, the overall cost of autism to the UK economy is £32.1bn per year, compared to cancer (£12bn) heart disease (£8bn) and stroke (£5bn).

A diagnosis of autism has a massive impact not only on the individual affected, but their whole family, friends and support network. What we need now are more clear and effective interventions, preferably early in life to either make the best use of scarce resources or introduce new policies to ensure that life is much more bearable for people with autism. Autistic people have a lot to offer society. The spectrum is huge and with this comes a range of colorful, engaging, interesting, worthy and promising people who are full of potential. Everyone has the right to hold a place in society. Everyone has the right to feel like they are valued.

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