Our son Robert is 22 years old and is autistic with moderate to severe learning difficulties . He can express what he wants and can sometimes articulate his feelings.

He can read and  write, is proficient in surfing Netflix and he enjoys work with his therapists as well as riding his bike, swimming , kayaking and most surprisingly, practicing yoga. What he finds most difficult is unpredictability . He loves his routine and exhibited severe anxiety when the first lockdown started . He has a new routine now which has alleviated some of the Covid induced stress.

 

The first paediatrician we saw when he was 4 said he was too affectionate to be autistic : he was sitting on his father’s knee and gave him a hug. This was despite him being non verbal, constantly flapping his hands and, it appeared , largely oblivious to the outside world.

 

We paid for a private diagnosis but afterwards  the eminent paediatrician showed us the door without any guidance as to how we should proceed in terms of interventions or relationship with statutory bodies . Little has changed today .

 

I learnt most things about autism and how to address Robert’s future through friends.  We home educated after being told by the local special school he probably wouldn’t read. My experience with the local authority has been good- unlike some of my friends who have had to go to tribunal to get the help they believe their children needed.

 

One of the hardest things negotiating with the authorities is you have to concentrate on informing them what the autistic person can’t do. Parental instinct , I have observed, is to celebrate what their autistic children can do, be it brush their own teeth or dress themselves. As parents we celebrate their achievements.

 

Looking back people often stared . I felt the nicest people were elderly Caribbean women - who perhaps had been nurses or carers while middle class grannies gave condemnatory comments like ‘can’t you control your child?’ Once on the train Robert was humming Thomas the Tank Engine songs. The elderly well-dressed lady sitting in the same seating area started to make critical clicks with her tongue. I said I was sorry if he disturbed her but he was autistic. ‘ I don’t care whatever he is’ she yelled and she jabbed her elbow into her husband who was sitting next to her. He hastily got up and together they stomped off.

 

On another occasion we went to a local tea shop. We enjoyed our snacks. Robert wasn’t noisy but he aroused a few stares from the staff. The next week we went again with the waitress, on our entry, suggesting we might be more comfortable in the (empty) back room. My husband demurred and she repeated the suggestion. We sat down right where we were.

 

I don’t think a young employee in a public place would behave like that now. For a start , social media might kick in, with footage going viral with the potential to damage the individual and the business.

 

More generally  I do find a much greater awareness of autism probably because more able autistic people like Chris Packham, the TV presenter, talk openly about their autism. But autism is a spectrum and I believe there is less awareness of the particular difficulties autistic people with learning difficulties face. I can’t count the number of times I have been asked if Robert is a maths genius!

 

What I do notice however are more little acts of kindness.  The volunteers at the Oxfam shop in Hastings who keep a stash of  children’s videos for my son in the back room. The couple who bought me a parking ticket when my parking app wouldn’t work and Robert was getting agitated. That’s what makes a difference and this awareness and acceptance over the past few years, though still a long way to go, needs to be celebrated.