VICTORIA WHITE: If this bill becomes law we’ll get a ‘menu’ of services for ASD people

Our mixed bag of State and charitable services has been criticised but it is typical, writes Victoria White

I AM tired of being told by people who want to prove their virtuous political credentials that autistic people in Ireland have no services. I can’t help itemising what the taxpayers of Ireland have done for my son Tom, who has just turned 16.

From the date of his birth until this month he was getting nearly €8,000 every year in direct supports, between child benefit at the (stupidly enhanced) rate for twins, domiciliary care allowance, and respite care grant.

He has been attending special schools for a decade. His specialist secondary school for autistic children has the same staff allocation as most autism units, one teacher, and two special needs assistants for six children. Classes such as this can cost the State over €100,000 in wages, which works out at about €17,000 per child per year. Add the enhanced capitation and extra supports and the schooling of a kid like mine can cost you, the taxpayer, over €20,000 a year.

He is picked up from his door, dropped to school, and brought home in the afternoon by a Bus Éireann bus staffed with a special needs assistant along with the driver. Persistent efforts to discover the exact cost of his trips to the State have so far failed but I divided the number of special needs schoolchildren Bus Éireann says it services — 10,000 — by the €3m it was subvented for this service some years ago, then added the SNA and came up with the precise figure of “a lot”.

Tom avails of a specialist service for autism. A psychiatrist reviews him, refers him to hospital for check-ups, and he gets sporadic speech and occupational therapy. His social worker has recently sanctioned a care assistant to take him out once a week for two hours at €20 an hour.

Since September he has done afternoons and overnights a couple of times a month in a respite facility for a small group of kids staffed day and night by at least two staff members. They sometimes bring him out for a slap-up feed of curry and chips.

So I just can’t stay silent when I hear the truism repeated time and again that children like my son get no services. It isn’t fair on the people who deliver his services and it’s not fair on you, the taxpayers of Ireland.

The real problem is not lack of resources. It is the fact they are allocated with a scatter-gun. What the ASD people of Ireland need most of all is a strategy. And if former health minister James Reilly’s wonderful Autism Spectrum Disorder Bill, debated last night in the Seanad, makes it into law and is implemented, we will finally have one.

The bill enjoins the health minister to prepare and publish an ASD strategy for the whole country within two years. This strategy will develop “a clear pathway to diagnosis and assessment for persons with autism spectrum disorder” and another clear pathway of treatment and care.

It provides for research which tells us how many ASD people there are and where. It will insist that provision for these people is consistent no matter where they live. It will outline how the needs of ASD people will be met in terms of access to healthcare, education, employment, the services provided by public bodies, advocacy services, and legal aid.

A report will be commissioned and published every three years into how well the strategy is being implemented.

The UK and Scotland — countries that along with Canada, Wales, Denmark, and Hungary have national strategies — required the ponying up of extra cash to finance their new commitments under law, with Scotland spending £13m over four years. It will not be possible to meet the needs of our national strategy without more cash.

But, I repeat: Cash is not our main problem.

Our main problem with autism services in this country is the absence of planning. A crazy patchwork quilt of services, some of them excellent, is spread unevenly across the country.

There is no real understanding of the condition as a constellation of disabilities. You can end up choosing whether you will get services for your child’s autism or ADHD. The often excellent services I get for my son are unavailable to my friend because her son is deemed — wait for it — too intellectually disabled.

Healthcare and social services staff are frequently deeply ignorant of the disorder. Ten years ago, when we first attended the State psychological services because of our son’s terrifying behaviour, we were assessed as a troubled family and spent two years meeting social workers and psychiatrists to work out what we were doing to our child.

The hard fact that autism is a life-long condition is not internalised by the State system. Even good old James Reilly was out on radio yesterday stressing that if ASD children get early intervention, then they may enter the workforce. When the truth is that there is no curing autism and only very high-functioning adults will ever work for pay.

This feeds into the maintenance of a rupture in services for kids when they turn 18, even if their mental age is two. We still need to reverse the 2001 judgment against Kathy Sinnott and admit that age is irrelevant in cases of intellectual disability.

But let’s remember that Ireland is nothing like as bad as most countries when it comes to autism. European research in 2005 showed 58% of ASD children were being educated at home and not, it would seem, out of choice.

France is still the most famous outlier among developed countries and has been criticised for “discrimination” against autistics five times by the Council of Europe. Their psychoanalytic profession won’t give up their ground and many autistics are wrongly hospitalised in psychiatric wards.

The European research showed anomalies all over the EU, however, with the UK hosting a population prone to “pathological demand avoidance”, a condition unknown anywhere else.

Our mixed bag of State and charitable services has been criticised but it is typical. Indeed, the existence of parent-run resources seems, in the European research, to be crucial to good outcomes.

It’s important to remember that the ASD spectrum was first diagnosed in the 1990s and though that may seem a long time ago to a parent, it isn’t for a State health service.

Charities and lobby groups are more nimble and reactive than the State; but the State should come in behind them when they’ve proved their worth.

If this bill becomes law we can look forward to having a “menu” of services for ASD people such as exists in the UK and Scotland, which would finally distinguish evidence-based therapies from the crackpot concoctions of nutjobs who stalk parents like me looking for money.

It would also stop play for the people who want to use my son and the 1 in 68 who are like him as their very own political footballs.


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