Raising autistic children and adults can be 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 when he was 3. My older son, Patrick, has a diagnosis of Asperger’s syndrome.
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 was from the film Rain Man.
In the early days, reading books highlighted that 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.
Patrick is now 31 and works full-time, for three years, at Pinewood Studios.
Angelo is 28 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 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 may be.
I speak to many parents of autistic children and adults through the autism charity, Anna Kennedy Online, which I set up in 2009. Parents share their frustrations with the 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 that autistic adults have in securing employment. Everyone deserves a job, no matter what their disability. It’s 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 that it is not applied, usually through the lack of awareness.
When autistic individuals reach their late teens or early twenties, 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 workplace – 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 scariest 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 when he went missing for four hours when we were on holiday.
Every day is a learning curve for all of us – some days are good, some days are not so good.
As long as you know and can put your hand on your heart that you have tried your best, that’s all you can ask of yourself.
Dr Anna Kennedy OBE is an educator who has worked to provide an improved education and other facilities for children with autism spectrum disorders.
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