Delay in diagnosis may impact a child’s development for life

In some cases, this delay in providing services to a young child will impact the child’s development for life.

Delay in diagnosis may impact a child’s development for life

How sad it is that in two separate cases revealed by Noel Baker in this newspaper, the High Court has given leave to the parents of autistic four-year-old children to apply for aggravated damages against the HSE because they claim their kids’ diagnoses were delayed.

Meanwhile, several cases already brought to court this year have resulted in the HSE being directed to carry out assessments of need within six weeks.

The Disability Act of 2005 established a statutory right for children with a suspected disability to have an assessment of need carried out within three months of them presenting to services and for a care plan to be delivered within three months thereafter, including all the necessary documentation to access a care plan.

This is cloud cuckoo land for most of the parents of autistic kids I meet and I meet a lot of them through the social club for ASD kids where I bring my own autistic teen.

The statistics back up this anecdotal evidence. Noel Baker found 3,662 overdue assessments of need in the system by the end of October last.

Do you understand what this means?

It means that fully thousands of children with suspected autism or other disabilities which don’t admit a simple diagnosis are having their legal right to services denied them.

In some cases, this delay in providing services to a young child will impact the child’s development for life

In all cases, the delay will cause confusion, pain, suffering and fear.

Parents who are worried their precious baby may have a lifelong disability are suffering enough already. They don’t need to be put through any more stress.

The issues these kids have won’t just disappear if they are ignored for long enough. They will mostly get worse. They will certainly be less understood and so cause more pain and suffering, both to the children and their parents.

Diagnosis is the hardest part of the jigsaw for a parent to find.

I remember my attempts to have my son diagnosed just over a decade ago with a mixture of anger and gallows humour.

We spent fully two years in with a HSE multi-disciplinary team being told that the problem was caused by the family. A social worker informed me that the clinic believed “all problems come from the family.” I was told to see a psychotherapist. One social worker said my problem was “my traditional role in the home.” No-one visited that home and no-one asked why the three other children showed not one single sign of the behaviour which troubled the son in question.

Autism was firmly ruled out for my son because he engaged in symbolic play. I was asked to enter him on an international register for “childhood schizophrenia” an understanding of autism which went out in the 1960s.

In the end I went to a private psychiatrist who charged me €200 for a diagnosis of autism in a process lasting minutes. I presented this piece of paper to the State services who confirmed the diagnosis.

This pantomime was staged after legislation had been passed guaranteeing me a timely AON and timely intervention.

I took no case but it was inevitable that others would because I have heard versions of my story and much worse repeated back to me multiple times.

What is behind the State’s appalling delay in laying out a clear and rational care pathway for kids who have a disability such as autism? An unwillingness to commit resources to people who can be helped but not cured? Who don’t block beds? Who don’t die of their condition?

Autism, ADHD and similar disabilities can’t be diagnosed with a simple test but internationally-agreed diagnostic procedures are in place.

The HSE knows all of this. They have just published a review of the health services for people with autism and a study of its prevalence in Ireland, reckoned at 1.5 percent of the population.

They also find that about 50% of the ASD population also has an intellectual disability

The message comes back again and again: we need a clear pathway to diagnosis and care; a “one stop shop” for information an information pack on diagnosis; a liaison officer to stay with families through the journey. Instead what we have is “a crazy patchwork quilt of services, some of them excellent, spread unevenly across the country.” This is a quotation from an article I wrote here last year but it is presented in the HSE’s report as coming from a “respondent”.

I meant it. It is important to underline that some of our services and our service providers are indeed excellent. Some of them are generously funded.

The issue is that there is no clear pathway to accessing those services and no rationale as to who gets them and who doesn’t.

There is no sense that “Progressing Disabilities”, the HSE’s masterplan for disabilities, is going to make things better. As rationalisation will mean kids with different disabilities will access services together, my son faces exiting his excellent, autism-specific clinic and returning to the very clinic which spent two years trying to pin his issues on our parenting style and “childhood schizophrenia”.

Both the current minister for health, Simon Harris, and his predecessor but one, James Reilly, have close relations with ASD but this has brought no urgency to getting to grips with the issue.

Senator James Reilly was out promising that his Autism Spectrum Disorders Bill, which would guarantee a strategy providing a “clear pathway to diagnosis and care” within two years, would be law “before Christmas”. That was last Christmas.

Meanwhile up North, where there is no parliament and politics is a boring game of cowboys and Indians, there has been an Autism Act since 2011 and a sophisticated approach to diagnosis is taken, with cases first screened for complexity by primary care workers before progressing to disability services if necessary.

This is international best practice but would require liaison between primary and secondary care services which we don’t have

Come to think of it, we don’t have State-wide, free primary care services at all, do we?

Ah well, we don’t have much of a problem with autism compared to the North where the prevalence is reckoned at 2.9% and is 31% higher than average among the least advantaged.

I wonder could the difference between them and us have something to do with the fact that for them, diagnosis is easier to come by?

Wouldn’t it be better to provide a “clear pathway to diagnosis and care” and find what our true rate of autism is in clinics across the country rather than in the courts?

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