As part of World Autism Awareness Week, the author of the fantastic ‘Autism With A Smile Blog’ (https://autismwithasmileblog.wordpress.com) writes a guest-blog for Healthwatch Essex on her lived experience of health and social care, as the single parent of an autistic child, living in Essex.
“Being the parent of a child with autism opens a whole new insight into the neurotypical world.
It all began when a rather strange health visitor came to see us, and asked if I felt “left out” as I had an “abnormal baby.” I wanted to ask her if she felt left out as she had an “abnormal” dress sense, but thought better of it. She then informed me my baby had a hole in the back of his head (maybe she thought the father was a piggy bank?). I was not too perturbed as we had just come back from seeing a neurologist at Great Ormond Street Hospital, who would have presumably noticed this. I suggested that my son had a good head for money, but the health visitor didn’t get either the joke or the point. We never saw her again, but she was replaced by a very lovely lady who put me in touch with another mum who is now a lifelong friend.
After many visits to the hospital, and being continually asked “Is this your first baby?” (my third), it was finally acknowledged that my son’s huge anxieties and bowel problems were not just part of his genetic disorder – he was also on the autistic spectrum.
And so to school. Apparently they could cope with autism (they couldn’t), but not the toileting issues. Day 1, and an incident has occurred requiring a memo to be sent to all staff – there appears to be a foreign body in my son’s pants and I must remove him from the premises immediately. When I collect him I point out it did happen during music and movement, but apparently these are not mitigating circumstances.
This issue remains the top priority throughout his primary education despite, his other significant learning difficulties. It’s a smear campaign.
Speech therapy beckons with the promise that it will help my son understand social language. When asked “How many boats can you see?” he replies “All of them.” I am then told there is no point in continuing, as my son is “not engaging.” Perhaps the expert in language needs to reflect on the use of her own…
An Educational Psychologist appears and informs me that my son does not have a bowel problem, he is merely giving me poo as a present. According to the Bristol Stool Chart (please look it up if you are not familiar with it, it is in fact a menu), he has given me several food hampers.
Joking apart, we have met some wonderful people. There are the undervalued LSAs who actually get my son, and probably spend many hours protecting him from those who have no time for special needs. There are Social Workers who are hugely stretched, but do their best under all the constraints they have to face (sadly, nowadays their appearance is extremely minimal and you never see the same one twice). We also had a fabulous Paediatrician who fought our corner to help my son stay in mainstream education – maybe not the right decision, but she respected what HE wanted. Most of all my brave, funny son who has given us a real sense of what really matters and says all the inappropriate things that we would love to!”