Fallen through the cracks and there is no help in sight for them

Fallen through the cracks and there is no help in sight for them

Specialist services are needed for children and teenagers with autism. It should encompass other conditions that come with it, writes Victoria White

Laura’s call to Liveline on Monday was totally overwhelmed by the sad news of Gay Byrne’s death.

This was ironic. Gay wouldn’t have let Laura’s call be overwhelmed by the start of World War Three.

Laura’s 13-year-old girl had, she said, been handcuffed and taken to a Garda Station in a Garda car because her behaviour was out of control. Her mother stressed that there was no alternative and the gardaí were respectful of her daughter, who was kicking and screaming and verbally abusing them.

None of this was her fault.

She has autism and ADHD and a mental health disorder and she’s only entering her teens.

She’s also been so badly let down by our health service that it should shock the nation. By the time their precious baby girl was six years old her parents knew something was wrong.

She had an Assessment of Needs carried out by the HSE as is her right under the Disability Act, 2005.

The HSE’s view was that the didn’t need any specialist services.

Three years later, her mother, at the end of her tether, went privately to a psychiatrist and learned that their daughter has autism (ASD) and Attention Deficit Hyperactive Disorder (ADHD).

What was she meant to do with this information?

Where is there to go when your child is given an autism diagnosis?

CAMHS, the Child and Adolescent Mental Health Service, does not deal with autism diagnoses.

This was the answer which kept coming back to Laura despite the five separate referrals of her child which were made to CAMHS..

CAMHS say they do not treat disabilities.

They do, however, accept cases of ADHD which they class as a mental health issue. ADHD is a neuro-developmental disorder, just like autism.

It presents so often with autism that in my view — from seeing dozens of children diagnosed with both conditions through the activities group for kids with autism which I help run — it is part and parcel of their autism diagnosis.

I meet parents all the time whose autistic kids are seen by CAMHS because of their ADHD, not their autism. I meet parents all the time whose autistic kids have been refused services by CAMHS, even if their kids have developed serious attendant mental health issues.

They’d better not have an intellectual disability, though, because CAHMS doesn’t attend to ID either.

My own autistic child is now an adult and hasn’t got any service at all because his intellectual disability was down-graded to “moderate” and no-one in my area is currently treating adults with autism and moderate ID.

Meanwhile, where is Laura’s daughter, who we left in a garda station?

Laura’s daughter, who was covered in scars from self-harming and down three dress sizes from starving herself, but who CAHMS still denied had a mental health issue?

As of Monday, she’d been in hospital for 16 days.

In that time she’s had to be held down by four or more security guards and forcibly sedated by a doctor about five times. Laura and her husband take turns to cover her bedside 24/7 and there is full-time security and nursing cover.

CAMHS now reckon the girl might just have a mental health disorder and are prepared to see her as an outpatient. How can her mother possibly cope with her at home when it takes four security guards in hospital?

Laura’s daughter has, she says “fallen through the cracks” between our mental health and disability services. The point she made was crucial: “You can’t take different parts of a child’s mind and send them to a different psychologist. There’s no communication between CAMHS and the disability team. It just doesn’t work.” It doesn’t. It’s crazy. But that’s what the HSE is attempting to do.

And it seems to be getting worse.

Under the HSE’s 2010 strategy, Progressing Disability Services, existing specialist services for autistic children and teens are being smashed up in an attempt to create a blanket of disability cover - ‘Children’s Disability Network Teams’ — which will mash together the treatment of every disability under the sun in a particular geographical area.

This is what they call “a national equitable approach.” What it means, in practice, is that some existing specialist services for autistic kids are being destroyed with nothing comparable to take their place. Contacted for advice recently by a friend who suspected her child had autism, all I could ask was, “Does she have €600? If she can raise it I have the name of a good private psychologist.” In my area, South Dublin, the psychiatrists have been removed from the local branch of Beechpark Services for autism and have been reabsorbed back into general HSE practice.

Some children presenting with autism have been referred back to, you guessed it, CAMHS, which doesn’t take them because they have a disability, not a psychiatric disorder.

Autism should be a stand-alone speciality within the health service. It should encompass ADHD, intellectual disability, psychiatric conditions and an alphabet spaghetti of other conditions which can be “co-morbid” with autism.

The “One Stop Shop” which the HSE review of autism services indicated last year was vital is nowhere to be seen and the Autism Spectrum Disorders Bill (2017) which promised a “clear pathway to diagnosis and care” never made it into law. Funny, that.

The HSE’s cack-handed attempt to isolate mental health issues from autism is outrageous. Its stupidity is underlined by the fact that they include ADHD as a mental health issue when it can clearly be termed a disability. Their attempt to combine the care of autism with that of all other disabilities is insane.

Fallen through the cracks and there is no help in sight for them

In Dublin an ASD specialist psychiatrist and an ASD specialist psychologist have told me separately that they have never seen the state of the service for autistic children and teens so bad. In Cork, the Cope Foundation, which has valiantly tried to offer the kind of One Stop Shop for autistic children and teens which has never been available in Dublin, recently went public with its appalling new statistics: 400 children awaiting an assessment for autism and 1,350 awaiting specialist intervention following assessment.

Its Chief Executive Sean Abbott said children needing support for ASD might reach 18 and exit the system without ever having been helped.

We are sloshing out €17.4bn on the health service next year including medical cards for all children under eight years and an extra 56,000 medical cards for over-70s who may have no pressing health issues. Meanwhile Laura is being told to take her 13-year-old daughter, with ASD, ADHD and mental illness, home.

I vividly remember the sound of a stigma breaking in the 1990s when Gay Byrne read out a letter from a mother who feared God had given her, in her disabled child, a burden too great for her.

Nowadays parents like Laura are less fearful of asking for help. But are they even less likely to get it?

How can her mother possibly cope with her at home when it takes four security guards in hospital?

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