How the health service is failing to cope with the diagnosis of autism

Edele Doherty, third from the right, pictured with a group of parents of children with autism who travelled to Stormont earliers this week to hand in a petition demanding better access to services for those with the condition.
Edele Doherty, third from the right, pictured with a group of parents of children with autism who travelled to Stormont earliers this week to hand in a petition demanding better access to services for those with the condition.

Autism is defined as lifelong, developmental disability that affects how a person communicates with and relates to other people, and how they experience the world around them.

But, beyond the definition of the condition how many of us without experience of a relative with the condition actually understand the isolation and frustration it causes?

For a child unable to adequately communicate ,the internalised feelings of insecurity can be overwhelming often causing them to lash out. It has a dreadful effect on self-esteem and subsequently a bad affect on other siblings and family life as a whole.

And, because the condition does not manifest itself in the form of a physical disability it is often the case that others simply consider the affected children to be ‘odd’ or that their behaviour is the result of ‘poor parenting’ when nothing in fact could be further than the truth.

Whilst the range of autism varies greatly from mild to severe cases one thing is universally agreed by professionals attempting to deal with it-that early diagnosis is vital. The Department of Health standard in Northern Ireland is that no one should wait more than 13 weeks for an assessment.

Edele Doherty is a Derry mother of three sons. Her oldest boy is six and she also has a set of twins who will be four this June. One of the twins, Cian, she believes is on the autistic spectrum.

“Cian is a very pleasant child, very placid and demands no attention.

“With other children to look after, at first I was glad he didn’t demand much attention. I had concerns, but I kept them to myself. He didn’t seek affection. In fact, he pushed it away. There was a real lack of social interaction. He tried to speak when he was very young-about nine or ten months. But, suddenly that stopped.

“I contacted the health visitor who advised that boys often develop slower than girls and the fact that the twins were born prematurely might also be a factor and that I should give it a few months and see,” she said.

In order to get on the ladder towards an assessment it is necessary to have a referral from a health visitor to access specialist services.

Whilst the months passed, Edele joined a local autism group called Circle of Support (C.O.S). It was there, having spoken to parents whose children where in the same position as Cian that she became even more convinced that her son needed access to a diagnosis more than ever.

“ When I came home from C.O.S I recognised that that’s where we were. If it wasn’t for them I’d still be sitting here waiting for someone to contact me for help.”

Little Cian Doherty was recommended to have a statutory assessment for special needs and referred to the Autistic Spectrum Disorder (ASD) team for assessment by them as well in May, 2015. The special needs statement in order to get him an appointment was not howeever finalised until the week before Christmas last year- a period of around eight months.

The Doherty family received acknowlegement of his ASD referral in June, 2015 and told that the process would be completed within the alloted 13 week timeframe.

Edele said: “As of yet he has still not even had his initial assessment which is just part one of a three-part process and we are told this could take up to another year to complete.”

Figures obtained under Freedom of Information reveal that within the Western Health and Social Care Trust (WHSCT) which stretches from Derry to Fermanagh tops the list of the worst performing area in terms of waiting for an assessment. For instance in 2014, it took 1,621 (almost four and a half years) for one adult to finally be assessed. Back in 2011 the longest wait for a child to receive an assessment was 424 days

The WHSCT was only able to provide data from 2014 for the adult waiting times.

Also, in a recent ‘Journal’ story it was revealed at a meeting of the WHSCT Board that 217 children in the area are currently waiting longer than the Department of Health’s recommended waiting time to receive an assessment. The Department of Health standard is set out as having to wait no longer than 13 weeks. At that Board meeting Kieran Downey, Director of Women and Children’s Services said that delays in assessment for autism were being faced across Northern Ireland and were not just a localised difficulty.

He said: “It would take £3m going forward to fund autism in terms of diagnosis going forward. Largely this is about an increase in the number of children being referred across Northern Ireland.

In March 2015, the number of children waiting more than 13 weeks for an assessment in the Western Trust area was 102, compared to December 2015 when the figure had risen to 217.

At the start of this week, a group called Autistic Spectrum Disorder Protest presented a petition to both the health and education departments at Stormont demanding a radical improvement in waiting times for assessments.

Over 8,000 people had signed it in just over ten days. Interestingly, just a day before the group arrived at Parliament Buildings, Health Minister Simon Hamilton announced that he would be investing an additional £2 million per year in Autism Services to tackle waiting lists and improve access rto support services.

He recognised that since 2010 the number of referrals for autism assessments has almost doubled from 1,500 to 2,800 at the end of 2015.

Edele Doherty however remains unconvinced by the move. She said: “I think the timing of that statement was very convenient. Overall, over all the trusts, £2 million a year is a drop in the ocean.”

“Talk to any parent and they will tell you that early intervention between the ages of three and seven is vital. That’s when these children need support to have a hope of achieving any quality of life. Children should have the same rights as everyone else.

“ The longer the wait the further into themselves they will go,” Edele continued.

The young mother however counts herself fortunate that in Derry she has been able to get her son a place at Ardnashee School. She told the ‘Journal’ that as the time approached for Cian to go to a mainstream nursery that it began to become an issue that filled her with dread.

“He wouldn’t have coped with it. He has sensory issues that make him sensitive to some surroundings. We pull back from even taking him into shopping centres because it overloads him and he becomes very upset,” she said.

Despite the fact that her son’s plight was bogged down in the bureaucratic backlog to have an initial diagnosis and referrals to educational psychology as well as speech and language therapy, Ardnashee recognised the situation for what it is and gave him a place. She says Cian is as happy and content as he can be now, even though there is still no sign of an initial diagnosis.

Edele said: “I know that it is not the fault of the people trying to operate a bad system.

“It just sometimes feels like the system is making things that difficult in the hope that you will go away.

“It’s so frustrating. Everything is a labour. Autistic children become autistic adults.

“It doesn’t go away. Only around 15 per cent of autistic adults work. I want my son to be able to work and to do that he needs a diagnosis in order to get treated.”

Whilst the wait goes on for Cian, like many other families in the same position across the North, the situation continues to take its toll on family life. Adele works for NI Water whilst his dad Gerard is the goalkeeper at Derry City Football Club.

“Autistic children are not good sleepers. Cian may get up at 3am and that it is him awake for the entire day then. I work full-time and I feel like I have to give work up.

“We feel like we are holding the other children back.

“They of course want to go and do things and go on holidays but Cian isn’t good in those situations.

“That’s not fair on them.”