Without a day service in place, these young adults with ASD are left with few options
As the end of the school year fast approaches, anxiety levels for many teenagers with autism, and their parents, become increasingly heightened.
The transition from one service to another can be difficult for young people with autism at the best of times but for many, as the end of their final school year approaches they still do not know what adult service, if any, they will be attending come September.
The fourth and final Voices From The Spectrum report that aired on The Pat Kenny Show during Autism Awareness Month, explored what happens when children with Autism turn 18 and leave the school system.
The report featured a number of young adults with autism and their parents based in North Dublin, who spoke about their stressful and damaging experiences of trying to access an adult service last year.
Denise lives in Ballymun with her son, Jason (19). When Jason was first diagnosed with autism at age three, Denise had to wait until he was six to get a suitable school placement. It never occurred to Denise that 12 years later she would be battling for a service for her son all over again:
"Up until June of last year we thought that Jason had a place with a local service provider so it was a terrible shock when we heard at a meeting on the 30th of June that due to a funding issue that place was not available and Jason had no service for September. I cried for days on end because I was back to that situation again when he was three. I thought by the time he was 18 there would placements available, because children have to reach 18 at some stage, and they [The HSE] knew how many children there were with autism."
Jason was one of 23 young adults living in Dublin who were left without a day service in September last year. Those young adults received no service whatsoever from September until early this year, when some of them received an interim service to keep them going until something more permanent could be put in place.
Tijmen O'Connor is 23 and lives in Howth with his parents. Tijmen has Asperger Syndrome, and he described how difficult it was to fill his days during that time: "I was hoping I would get some support and have a job but I didn’t. It wasn’t easy, there were mornings when I didn’t feel like getting out of bed, I suppose you could call it depression in some ways."
Tijmen’s mother, Ditte, who has an auto-immune disease, lives in fear of becoming ill because Tijmen would be lost without her. During the months that he had no service, she tried to fill the time in his schedule, but noted that "it was hard, we set up a programme and a structure for him. Around Christmas he got quite down and I was seriously worried about him, about his mood. If the service had been there he would have been up in the morning and he would have been occupied every day, he is entitled to that. I’m not going to be there forever, that’s my biggest worry. He deserves the best, he’s a really nice man and he has great potential."
Kevin Whelan, CEO of the charity Irish Autism Action, says that, "The situation [in North Dublin] is going to repeat itself this summer. In general, the problem is one of poor planning. Of all the adult service provision in Ireland at the moment, 3% of it is autism-specific, 52% of the disability population in special schools have autism. Those figures don't add up, and they don't augur well for young adults like Tijmen and Jason."
Listen to episode four of 'Voices from the Spectrum' in full here: