Autism and Us
By Karen Nicholls | Published on February 17, 2021 | 8 Minute Read
I'm Karen and I'm mum to 2 older teens, Mia 18 and Tom 16. Tom was diagnosed with ASD 5 years ago. He has since struggled daily with huge anxiety and sensory issues.
Around the time of his diagnosis Tom's junior school ended. He didn't accept this at all, as when he started at the school it went up to year 7 but then the school system changed and everyone left at year 6. As far as Tom was concerned he had to do year 7 because that's what happened when he started there.
We've since realised over the last 5 years just how important things ending are to Tom.
It took him almost a year to accept he needed to go to a new school, and during that time he remained at home with me, I had to give up my childminding business to become Tom's full time carer. We had virtually no support professionally. Camhs have questioned it all from the beginning, not seeing anything wrong. He's not in school, he should be in school. Let's get him in school. Not looking or understanding why he's not. The psychiatrist told me all I needed to do was send him off with a sandwich in a box... he'll be fine....
He used to go to school with a sandwich in a box.... There was a lot of judgment on my parenting skills.
In September 2017, he began at an ASD school. He loved it and settled amazingly. However 2 months later, the whole school celebrated children in need. There were photos of Tom joining in but then he got home and it was all too much.
He couldn't go back.
The school was amazing for 2 years though and continued to support us with home visits, which worked fairly well. But in May 2019 the ehcp was reviewed and support was cut because his actual school attendance was 0% over the 2 years.
We then had nothing again for 7 months.
It may take him a long time to acknowledge you but when he does and properly gets to know you, you will never be forgotten
Unhelpful professionals had meetings as they were so concerned about Tom, but failed to provide what had worked before.
A consistent support worker visited him at home. Something we had for a year, that worked brilliantly. Tom had a good rapport with this guy, built up trust and after a year he went out with him, to Subway - one of Tom's favourite takeaways. I had to go too but it filled me with such hope how that could've evolved. The L/A cut it soon after as they hadn't accessed the community enough.
Tom's never forgotten that guy. He draws a picture of him on every birthday and christmas wishlist. It may take him a long time to acknowledge you but when he does and properly gets to know you, you will never be forgotten.
So here we are, after a year of covid-19.
Tom has regressed further. He's become dependent on his sister to be around for certain routines in his day. If she can't, which obviously she's just turned 19 and has her own stuff going on, but Tom doesn't accept it and can't move on until he's completed his routines with her.
I feel it's a result of lack of support and good support being stopped. He's had an autism burnout, I've seen a lot of information that is relatable to him. But my views still aren't really listened to, it's down to my parenting.
We did start to have some positive understanding last year though. Assessments completed, 2 so far that have highlighted and agreed with everything I've said... A home tutor which has seen tiny positives and we have a new support worker who began at the start of last year. He had to stay away during the first lockdown but resumed visits in the summer. He's been brilliant. He seems to completely understand Tom, and why he does what he needs to do. He has a wealth of experience with children and young people like Tom too.
I just hope his support can continue.