A mother has spoken of her family’s four-year battle for an autism diagnosis and said the anguish drove her husband to attempt suicide.
Unable to cope with watching his son struggle at school, as the family pleaded for help from health and social workers, he took an overdose on prescription medication and spent three days in hospital.
Concerns raised four years ago
His wife, who has asked to remain anonymous, said she first flagged up her son’s condition to the Isle of Wight Council when he was three years old, after he became increasingly aggressive towards his younger brother and started biting other children.
When she raised the issue at his primary school, she said the headteacher told her everyone was ‘a little bit autistic.’
She moved her son to another school, but problems persisted until regular attendance became impossible. When her son began wetting himself she pulled him from full-time education entirely.
Left to languish on a waiting list
Now aged 13, it was not until he was eight that he was formally diagnosed at the Autism Diagnostic Research Centre (ADRC) in Southampton.
He was one of hundreds of Island children left to languish on a waiting list as the centre struggled with a huge backlog of referrals.
Suicidal thoughts
His mum said the stress and anxiety left her and her husband feeling suicidal, but said she had to stay strong for their three sons.
She said:
“Sometimes I have dark days too, and I think what’s the point? But there is no one to care for my boys.
“People ask me how I do it, and I say you just have to get on with it. We just do it.”
Her youngest son also suffers from cerebral palsy and two of the boys now attend special schools.
Not enough support
She said there was not enough support for parents and families with autistic children on the Isle of Wight and said her family had had been assigned ‘multiple’ social workers in the last few years, rather than a dedicated caseworker who knew them and understood their needs.
“It’s like a revolving door. None of them stick around for too long,” she said, admitting it felt as though services on the Island had ‘given up’ on her family.
As previously reported, the ADRC admitted it October last year it was unable to cope with demand and stopped taking new referrals.
Backlog could take year to clear
The diagnosis service was taken on by the Isle of Wight NHS Trust, but healthcare bosses at the trust and Clinical Commissioning Group (CCG) have since warned it could take over a year to clear the backlog of 150 referrals.
The council said previously a formal autism diagnosis was not required in order to access special educational needs support, but parents have said that did not tally with their experience.
Need to get on top of the problem
The boy’s mum said:
“If we do not get on top of this, it’s going to have huge problems in the future.”
She spoke of parents who had resorted to paying for a private diagnosis to ensure their children received the help and support they needed, but said:
“Even this is not always accepted.”
She said her husband had recovered from his traumatic experience and the couple had learnt to communicate and cope together.
Lengthy delays and a lack of communication
In the wake of reports on autism diagnosis delays, numerous parents contacted the local paper to share their stories. They spoke of lengthy delays and a lack of communication from the different agencies involved.
One said:
“Communication with parents is still non existent despite previous reassurances that this would change. It feels, more than ever, that nobody actually cares all that much about the people who are affected by this — disabled children and their families.”
Despite the importance of agencies working together to ensure children received the right support and did not slip through the net, an issue repeatedly highlighted by the Isle of Wight Council and Isle of Wight NHS Trust, both organisations said autism diagnosis delays were not their responsibility when asked for a comment.
The CCG did not respond to requests for comment.
This article is from the BBC’s LDRS (Local Democracy Reporter Service) scheme, which OnTheWight is taking part in. Some additions by OnTheWight. Ed
Image: Kiran Foster under CC BY 2.0
