Raising autistic children and adults is physically and mentally demanding especially now during these difficult times – no matter how much you love them.
My youngest son, Angelo, was diagnosed with autism and a severe sensory processing condition and nocturnal epilepsy at the age of 3. While my older son, Patrick, has a diagnosis Asperger’s syndrome.
Patrick had actually been diagnosed three years earlier than we knew as his parents. However, the consultant paediatrician – for some reason – did not share this information with my husband and I. We were not told about his diagnosis until we went to a meeting at his mainstream school because of his school refusal, when he was 7.
The headteacher asked: ‘Why didn’t you tell us Patrick has a diagnosis of Asperger’s syndrome?’ I said: ‘Because I’ve only just found out this minute from the report shared at this meeting.’ I felt a rush of blood to my head and couldn’t concentrate on the rest of the meeting.
Patrick had been having difficulties at school; he wouldn’t go into the classroom and he would get very anxious and angry. He’d ask: ‘What does bird brain mean?’, which is what the other children would call him.
At that time, in the 1990s, I was told my sons were unique and there was no one else in the area in the same situation with children on the spectrum. It made me feel isolated. Some parents look for someone to blame but there isn’t anyone. Your children haven’t changed; they are still the same only now they have a label for their condition.
However, in the 90s not one person sat down with us as parents and shared with us what ‘autism’ was and which was the best approach to use. The only information I knew at that time I was the film Rain Man. When you begin to read about autism many books say children on the spectrum have problems with social interaction, communication, impairment of their imagination, and no two children are the same.
I remember when we would buy gifts for Patrick, he’d inspect them closely to make sure they were perfect. He’d be very unhappy if even a dot of paint was out of place. He has always been hungry for information on his favourite topics and loved reading dictionaries at a very young age.
He’d memorised the alphabet by the age of two and he knew 50 Thomas the Tank Engine stories off by heart. He found it difficult to play with children – he’d stroke their faces or ask them lots of questions always searching for clarification. As they rejected him, he started saying: ‘Human beings are horrible,’ that he preferred animals since they were loyal and he became really angry and drew himself wearing his school uniform with smoke coming out of his ears due to his frustration.
Both my boys were out of mainstream education for three years and only receiving five hours of home tuition a day. It was very frustrating. One teaching assistant had never worked with children with autism and by the third day she was crying, saying she didn’t know what to do with Angelo.
I’d read lots of books saying early intervention is crucial, yet people are left to deal with finding out information themselves until it reaches crisis point. As much as you love your children, it can be physically and mentally demanding especially with the lack of sleep and juggling many balls in the air with appointments and trying to hold down a job.
In 1999 we found an empty school in our area that was going to be turned into flats. We decided to set up our own school for children with autism. We raised £627,000 to refurbish it in 18 months. I asked for help in the local paper and got it; there were so many families who’d been affected by autism who wanted to help. We opened in 1999 with 19 children. My two children were the last two to be funded; we thought they might not get in. The school now has 190 pupils and one of the largest autism-specific schools in the UK.
Patrick’s now 30 and works full-time for almost two years at Pinewood Studios and is currently on furlough due to COVID-19 . His anxiety levels are raised and needs reassurance.
Angelo is 27 and attends the vocational college we set up working daily on improving his independent living skills. He still has a poor sleep pattern and only sleeps a few hours which sometimes I find mentally draining. Now, with the COVID-19 pandemic I am extra vigilant with Angelo since he is unaware of the dangers of COVID and I am doing my best to keep him safe. He is frustrated because our routine has changed however, I am doing my best in creating a temporary new routine until we are able to return to normal whatever that maybe.
I speak to many parents of autistic children and adults through the autism charity Anna Kennedy Online I set up in 2009. Parents share their frustrations with system and highlight difficulties with the SEND education system and how they have to fight for the correct provision that meets their child’s needs.
Many parents share difficulties autistic adults have of securing employment. Everyone deserves a job no matter what their disability. Its quite clear the legal framework around disability and employment that exists would work well if it was applied. The problem a lot of the time is it is not applied usually through the lack of awareness.
When autistic individuals reach their late teens or early 20s, you need to be vigilant and continue to support them as parents – their behaviour through no fault of their own can be and is often misinterpreted and autistic adults can get into difficulties. I have spoken to parents where their teenage or adult children have been involved in ‘mate crime’ and subsequently been arrested when caught or many have been sectioned due to mental health difficulties because they have been failed by the care system.
Of course, I’m worried about the future for my sons – that’s why my husband and I have tried to put in place everything we can to try and give our sons the best education and support to help them both become as independent as they possibly can.
There is more awareness now than when my children were diagnosed however, we need acceptance and autism and overlapping conditions are still not well understood among the wider society.
Many children can cope in mainstream schools, colleges and the work place others just simply cannot. Small reasonable adjustments are required to adapt their environment. This can make a huge difference to the individual and this will enable them to excel and progress within the right and supportive environment.
Some children and adults will need day-to-day support and will require this support for the rest of their lives like my son Angelo. Angelo does not have a sense of danger and always keeps me on my toes.
The most scary thing he did was that he ended up sitting on next door’s chimney because he likes heights; he sees no danger in that or went missing for four hours when we were on holiday .
I am of the opinion I am never going to retire. I’ve achieved things I never thought I would ever achieve and I’m driven by the love I have for my sons. I’ll never give up or give in and I want to create as many opportunities as I can to help as many children and adults within the autism community as I can since I remember how isolated I felt when my children were first diagnosed all those years ago.
We have been on such a long journey together and we still have a long ways to go. Some days good some days not so good.We are taking it one day at a time and always learning along the way .
My motto is and will always be: ‘You can either give up, give in, or give it all you’ve got – and then some!’
Dr Anna Kennedy OBE is an educator who has worked to provide an improved education and other facilities for children with autism spectrum disorders.
The articles we publish on Psychreg are here to educate and inform. They’re not meant to take the place of expert advice. So if you’re looking for professional help, don’t delay or ignore it because of what you’ve read here. Check our full disclaimer.