I keep a close eye on Daniel’s wellbeing because, when he is tired, his behaviours become particularly challenging. I say ‘challenging’; what I mean is that he is feeling extremely battered by stimuli, and under greater pressure to process feelings and events.
At the beginning of the week, when he awoke with puffy eyes, I booked him a doctor’s appointment because I suspected conjunctivitis. When I told him that I was going to do this, he was extremely reluctant: he felt afraid of being hurt by the doctor and, despite my repeated assurances that doctors’ intentions are to help us to stay well, he did not believe me.
This suspicion and mistrust is part of his condition. It was also in my wiring: I spent my childhood suspicious of people, institutions (school, for example) and events (I might get hurt or abandoned). It is perhaps because I relate that I feel anxious for my son. I also feel a bit responsible, and therefore guilty, despite genetics playing their part when it comes to family brain chemistry. I was a highly anxious child and, while domestic circumstances weren’t the greatest, it later became apparent that blaming childhood experience missed the point: my ‘default setting’ has been down to my wiring. I am fortunate indeed to be a member of Alcoholics Anonymous, since this affords me a set of tools for life in the form of the Twelve Step Programme. Since the brain is, largely, a computer, it stands to reason that decent software will keep viruses and malfunctions to a minimum.
And so to my son, who has perhaps the same wiring as me, but with the autism to give it a special spin. Brains in my family are like hats: we all wear ours at a differently jaunty angle. If there was a neurological equivalent of Ladies’ Day at Ascot, we would either win prizes or forever be barred from the event.
Daniel, in his terror, refused to let the doctor near him, running away and threatening “stabbing” and “being put in prison and the recycling bin”. I followed him frantically around the waiting area just outside the doctor’s room, imitating calm as best I could. Although I suggested that the doctor check me over first, so that he could see that no-one would be hurt, I was fearful of wasting time and using up appointments meant for other people. After a while, the doctor did a very kind thing – she made an appointment for the end of surgery on the same morning so that he could have time to relax a little.
When we returned, he felt a little bit calmer. I had also bribed him with electrical goods and a ham and cheese toastie if he let the doctor have a look at him. This meant that he submitted to have his breathing tested, as long as he held the end of the stethoscope, putting it wherever the doctor asked him to. Such is his need to feel in control of a situation, beautifully illustrated in the television series “The A-Word” in which the little boy closes doors held open for him so that he can ‘own’ the whole entry and exit process wherever he may be.
My son has a sensitivity to the Epstein Barr virus. This virus is carried by everyone, I think, but only ‘activated’ in certain people. Teenagers can contract Glandular Fever, when the Epstein Barr virus is activated as ‘mononucleosis’. In my son’s case, a borderline case of tonsillitis when he was three years old turned into urticarial vasculitis, a livid all-over rash. A week in hospital had cross-disciplinary medics scratching their heads. Swollen joints might have meant synovitis or, at worst, rheumatic fever, but the rash got the dermatologists interested, and a biopsy revealed the culprit: Epstein Barr.
Another medical writer (I won’t disclose, as I have yet to read his book), contends that Autism and Epstein Barr have links – but, again, I can’t elaborate. My lady at the DWP saw me reading a book about the brain, and recommended the book to me and, when she spoke of Epstein Barr and Autism, I told her about our spell in hospital three or four years ago.
The doctor’s opinion, on Tuesday, is that a viral infection has left residual fatigue, and she estimates that this will clear up in the coming fortnight. But the Epstein Barr – sensitivity was what alerted me to make the appointment, and I a glad that I mentioned it to her.
Children with autism experience tiredness with more difficulty than many, and this is something that I can, again, relate to as the survivor of a brain injury sustained a decade ago, and classified as “Severe Traumatic”. I am less adversely affected by overtiredness nowadays, thanks to medication for a pre-existing neurochemical imbalance and also thanks to the amount of exercise that I do. I do this because it enables me to stay calm, and because its benefits for my mental, emotional and physical sense of wellbeing are myriad.
My mother and Susie have flown off on holiday today; they will return in about sixteen days’ time. It has stimulated in me a certain amount of anxiety, and I think this is an overhang from the days when brain injury and single parenthood proved extremely testing. Until two and a half years ago I had nor been put on the right medication for a neurochemical imbalance which, as I have mentioned, has made life arduous, to say the least, even before the road accident. It is difficult not to see previous decisions as foolhardy, rather than unwell; perhaps because they were both. Some things went amazingly brilliantly; others nosedived slowly, inexorably, horribly – collisions of instinct in slow motion brought about by love of true idols, or false. For every bit of right action something else lurked, coming out of the shadows like an old friend and ushering me off to chase falsehoods, empty dreams not truly my own. By the time of the brain injury I needed something, badly, to slap me up sharp.
It did. It took years.
Whether it was my Higher Self, or a Pain Body, evolved to try to justify the amount of pain I felt daily, emotionally and mentally, it knocked my life into outer space and shook me until I could let go of the shoddy lies I had tried to live up to. It shook me … free.
ASD: on being a special-needs single parent 