Danny's mum tells us about the challenges of finding the right support for her son.
The first steps towards diagnosis
I knew Danny was different as early as 18 months old. I’d take him to play with other children and he would just run around in a circle and not play like the others. When he was two and a half, he went on a merry-go-round and did not wave like the other children. It was as if he had become part of the merry-go-round.
When he was asked what he wanted to be when he was older, he would say a train – not a train driver. It was as if he did not relate to himself as a person."
Danny’s speech was different; it developed normally in terms of vocabulary but sounded unusual, and he received speech therapy.
School was just so awful for him. He was bullied for years. He was assessed as "above average intelligence but below average functioning" at school. A friend gave me some information about dyspraxia and dyslexia, which sounded very much like Danny (who was later diagnosed with both). A professional mentioned ADHD but when I mentioned these things to they school, they said, "we think he's autistic."
Finding the right support
I went to our GP who referred us to a child psychiatrist, who announced "he is not classically autistic, but has some behaviour which is similar”. We later found out that this doctor was very against labelling children autistic.
Things got worse, so I went back to our GP and we were eventually referred to a clinical psychologist. As she had a three year waiting list for autism diagnosis, she put me in touch with a local autism support group and advised us to contact the NAS.
The support group was not helpful – all of the other parents had children with challenging behaviour. It was the focus of discussion every time I went and there was a perception that I was lucky as this was really not an issue for Danny. They didn’t seem to understand that what he was going through was also difficult. So eventually I stopped attending.
The NAS were completely different. They listened and gave me some really good advice about how to help him.
At senior school things got worse for Danny. He was bullied and received physical injuries. By the time he turned 13, he was talking about taking his own life. We wrote to the educational psychologist explaining the developments. To her credit she saw Danny immediately and he received a diagnosis of autism.
Through our initiative, Danny was moved to a school with a specialist unit and a brilliant SENCO, who was just amazing. We then had a really good few years of schooling with Danny. He left with three GCSEs grade C and above. He re-took his Maths and English again later, so now has five GCSEs. This helped him to get onto the course he wanted to do at a mainstream college.
Danny’s transition planning did not start until he was 15. The school just missed him at 14. I think that was because he hadn’t been there for long. The school were honest about it and the SENCO was so good that it seemed counter-productive to cause a fuss.
Danny moved to a residential college for people with communication difficulties, but not specifically autism. It did not allow home visits for the first half term so that the students had a chance to settle in.
There were some teething problems – the college did "not recognise faddy eaters”, so Danny lived off Birds Eye chicken fillets and microwaveable chips and other rubbish that he could buy from a local newsagent's. The staff worked with him to try new foods and although he never got to the point where he ate a ‘balanced’ diet, his diet improved considerably.
Three years later at his graduation event, Danny surprised everyone and spoke. He said:
I hear that some you new students have followed my lead and continue my tradition of escaping to the newsagent’s to eat junk food – I’m delighted that I leave my legacy in safe hands.” We laughed. The Head did not!"
In fact, that has been part of Danny’s transition into an adult – he will try different food. We can all go to restaurants and know he will find something he can eat. It is just such a nice family thing to be able to do.
Danny’s last year at residential college was about transition. He became very interested in art and went on to mainstream college to get his diploma.
Danny was 21-22 years old when things went terribly wrong for him.
He got mixed up in an unpleasant group, who masqueraded as his friends but just took advantage of him."
The situation slowly deteriorated and he was called "paedo" and accused of stalking a girl and making her feel vulnerable. The group made a false sexual assault charge and Danny was suspended for six weeks.
Fortunately we found evidence that this was a stitch up and went to the police. Danny was reinstated but the girls were not expelled. This was a terrible experience for him and the college provided little help. He became very depressed and found it even more difficult to socialise as a result, but with the support of his family and some close friends, he has managed to move on.
Going to university
Despite everything, Danny passed his diploma with distinctions and after a number of interviews he was given a place at Derby University. They were brilliant and set him up with a support worker for his first day and made sure that he had the right support from day one.
After his first year, Danny lived-in at university and only came home about once a term.
He was so happy there and developed proper friendships with five or six people, which he has maintained since leaving."
Yes, I had regular phone calls and visited him for coffee at times but he only came home on planned visits, never in an emergency.
There were times I wanted to interfere and help him with his organisational skills but I made a decision not to and that was what he wanted too.
He passed his degree and his Dad and I are as proud as anything of his achievements. So, so proud!
Trying to find a job
Danny is currently looking for work, but finding interviews difficult. However, he is living independently, has a girlfriend and has travelled across the world by himself. Not bad when you think he needed so much support to catch a bus and train from college to home when he 16-17 years old.
I think one of the things that has helped Danny is his ability to see the funny side of things."
When a person interviewing him was very alarmed when Danny mentioned autism, he wrote it on his pad in very bold letters with an underline. Danny responded with: “I’m not going to kick off you know”.
On another occasion he was so focused on sending his brother a text he forgot where he was and walked into a canal – an incident which is now embedded in family folklore and always makes him laugh.
Some words of advice
If I could give other families with a child who has ASD advice regarding transitions, I would say “have your ducks lined up”. For instance, have a good SENCO who can help you with the process. If you don’t have a SENCO, speak to the NAS. No flannel - the Helpline was brilliant, a lifesaver at times. Most importantly, make sure that the young person has a major say in the route being planned, otherwise it just won’t work.
As for strategists and professionals reading this:
Please develop better communication regarding transitions, with a structured handover between services. Please make it essential that transition planning has to be done prior to, rather than after the event."