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“I’m like a wasp in a jar – I see and hear people around me but when I try to get into their world I just keep hitting the glass.”
THESE ARE THE words of a person with autism – the complex developmental disorder that affects one in every 100 people worldwide.
Autism has long been known as the ‘hidden condition’ because it may not be immediately evident in people who have the disorder. The result is a sector that has been historically underfunded, meaning its services lag far behind that of other disabilities, often leaving people with autism unable to reach their full potential and live independent lives.
Enabling people with autism to break through the metaphorical glass jar is at the heart of the Autism Bill which I brought before Dáil Eireann last Friday. The Bill received unanimous cross-party support in the chamber and was accepted by Minister for Health James Reilly, who acknowledged the need for a national policy response to autism. Tánaiste Eamon Gilmore said it was an ‘historic day for people with autism’ and that it marked ‘a first step in making autism a national priority’.
As a local TD for the constituency of Cork South-West, I have encountered too many families who are frustrated with poor access to autism services locally. Their stories struck a chord with me and it was clear that something had to be done on a political level to address their very genuine and sincere concerns.
Ireland has been trailing its European counterparts for many years in this particular policy area. Since 2008, Autism Acts have been introduced in England and Northern Ireland, while Wales and Scotland implemented national autism strategies which I understand are working well.
Now the Irish Government has fallen into step with these jurisdictions by approving an Autism Bill that provides for a national autism strategy. It aims to ensure a unified standard of autism care nationally and that services are delivered in a more consistent manner.
Currently autism services in Ireland are under-developed and lack co-ordination. A HSE review published in February 2012 found that autism services varied from patchy and ineffective in some places to comprehensive and integrated in others. A national autism strategy would put an end to this postcode lottery system while also ensuring equity of service and early intervention.
Measures such as an autism awareness campaign and clear pathways of support for families are covered by the strategy. It also provides for the establishment of a data collection system and the commissioning of research to record and report the incidence of autism here. The lack of available data on autism in Ireland is something which stakeholders repeatedly flag as being a key problem in terms of planning for future service needs and something which further differentiates it from other disabilities.
A fundamental aspect of the autism strategy is that it will be cross-Departmental and will require various ministers to plan and implement strategies in their own sectoral areas. For example, there is scope for the Department of the Environment to ensure the type of housing provided to people with autism is commensurate with their needs and abilities. I also believe there is a role for the Department of Jobs to devise job-ready programmes for adults with autism who may progress through the education system, or to encourage businesses to run special programmes for hiring autistic employees who may possess certain valuable skills such as focus and attention to detail that are common characteristics of the condition.
Not only is this legislation autism-specific, it is also adult-specific. Many Irish parents with experience of autism will tell you that appropriate services cease to exist once their child turns 18 and that there are no transitional arrangements available to ease their child into the adult services. Many parents have likened this experience to ‘falling off a cliff face’ and the vacuum is thought to be the main reason why adults with autism have high rates of depression, unemployment and social isolation.
Why does this ‘cliff face’ occur? As adult services are organised into separate mental health and learning disability teams, adults with autism often end up falling between two stools because autism is neither a learning disability nor a mental health condition – it is a developmental disorder (although it does happen from time to time that people with autism have an accompanying learning disability and/or mental health needs). Therefore the structure of adult health services effectively discriminates against adults with autism and is a leading cause of inequality for them.
An autism strategy will address this anomaly in the system and ensure that parents won’t have to endure the awful uncertainty of not knowing how the needs of their autistic child will be met once they turn 18.
Last Friday was a historic day for people with autism in Ireland. It marked the first time in the history of our State that an Irish Government acknowledged the rights of citizens with autism and those of their families. It will ensure that future Governments will be obliged to meet the needs of these people – whether those needs are of an educational, social, health, economic or environmental nature.
This legislation is our first step in making autism a national priority in this country and I hope it will be a springboard for many new developments in the autism field in Ireland. I know that we will all look back on this monumental legislative development as the first step in a truly historic journey towards breaking the glass jar of autism.
Deputy Michael McCarthy is a Labour Party TD for Cork South-West and is also Chair of the Oireachtas Committee on the Environment, Culture and the Gaeltacht. McCarthy was elected to Dáil Eireann in 2011, having previously served as a member of Seanad Eireann for nine years. He is also on the Constitutional Convention. McCarthy first entered public life in 1999, when he was was elected to Cork County Council for the Skibbereen Electoral Area, making him the youngest county councillor in the country that term.
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Long overdue but nonetheless welcomed. There is not a school in the country that hasn’t taught a child with autism. This spectrum disorder is more common than people think.
Especially with phoney diagnoses coming out of Dublin so parents can pick up the extra money.
Ah ha! The red thumbs must be from those people who paid the €300 for the diagnosis.
There are some people who all the autism awareness campaigns are wasted on… They will just never get it, right smiley???
Smiley you need to get an education. I have 2 children with ASD/ADHD. My younger child was taken on by the early intervention team at 14 months of age. Obviously, having an older child, I recognised the signs. Autism can be accurately diagnosed at 30 months. So we waited. When the time came, the EI team had no psychologist available due to the HSE embargo. Just before he was 3 years old, and well aware of the importance of early intervention, we had our son privately diagnosed. Without a diagnosis, you cannot get home tuition, which is the most effective early intervention available in this country. The HSE funded EI team assessed my son 2 months ago, confirming his diagnosis and recommending an ASD unit. By then, he was more than 4 years old. Had we not had him diagnosed and started intervention, we would have lost a year of early intervention. I have met many autism parents and have yet to meet someone with a “phoney diagnosis”. Your comment are extremely offensive.
Okay, I’ll come clean. I currently work in the field of children with ASD disorders. They are all legitimately diagnosed by HSE EI people. However, and this is my gripe, I know of many children, whose diagnosis has come back negative, whose parents have subsequently taken same children to the Dublin specialist who has diagnosed them positive, in the space of 20 minutes (yes, I said 20 minutes) and, hey presto, funding, care allowances, the whole nine yards. I just wish someone would sort out the wheat from the chaff. Would save the country heaps of money if those scammers were sorted out.
HSE ! Experts!! I had 8 years of misdiagnosis, pushed from Billy to jack , right hand didn’t know what their left hand was doing shite from the HSE,
It was embarrassing , amatuer rubbish , my son missed out on so much it is a disgrace, & your stupid comments are not helpful, maybe we could save money by cutting all the wasters out of HSE
I just hope there is action & that this is not a load of hot-air from the government. Families with teenagers & adults with autism are crying out for help all over Ireland.
Then why don’t the Department of Social Welfare recognise Autism and stop cutting children off the DCA.
The DCA Scheme is not based on diagnosis but the arising substantial levels of care required as a result of a disability or medical condition above that of a child of same age without a disability or medical condition. A child does not actually need to have a diagnosis in order to apply for the scheme, but evidence is required that the child needs a substantial level of care. The question is, what does one consider to be substantial and that often differs between parents, professional reports and medical assessors in the Department.
that’s discrimination ,they cant turn down somebody with Autism
Well done to Deputy McCarthy for highlighting this critical issue.
As the Father of an 11 year old boy who is on the Autism Spectrum I know only too well the heartbreaking pain of other parents as they are sent from pillar to post to access services for their children that just do not exist.
Perhaps this is the first step in addressing what is a very big problem.
Meeting the needs of the people….
Does that mean reducing the Respite Care Grant? Does that mean Occupational Therapy and Speech and Language Therapy services are going to be provided in the community to reduce waiting times from 3 years in some areas. Does that mean more Special Needs Assistants and Resource hours are going to be provided? Does that mean when parents are given a diagnosis, early intervention will be provided?
Does that mean when the ‘Assessment of Need’ is complete and a diagnosis is made, a service is available and not a situation whereby parents are left isolated with no support. Does that mean that when a child with high functioning Autism is deemed suitable for mainstream schooling you lose all community services.
Does that mean when you try to obtain a tax rebate for private treatment, you are told by Revenue that occupational therapy does not qualify as a medical expense and after many meetings you receive a letter from the then Minister for Finance stating that is correct.
Does that mean every school year from March till June and sometimes September you must endure sleepless nights, worried and concerned you will lose SNA cover and resource hours because the SENO from the Dept of Special Education has been instructed by her Dept their budget is yet again reduced.
Parents who strive to seek what should be the norm for their amazing children, capable of a full productive life, if they progress with early intervention. They deserve better.
What I like about this bill is that almost all sections require action by government. The terms of the bill provide that government and agencies “shall”…….. It is rights based and not subject caveats such as availability of funds. It is time that the rights of people with autism are recognised and that services are not seen as a charitable response to an unfortunate situation.
Autisim services in this country are deplorable and the lack of understanding of it by teaching professionals is nothing short of a national disgrace, my son has a double diagnosis of ASD and DCD and has on the last year received about 8 hours of individual therapy and and about 10 hours of group therapy across all departments physocolgy, occupational therapy, speech and language and social skills , from my conversations with other parents the 18 hours we got over a year were considerably more then they received and totally inadequate to my sons needs.
I am glad the government are recognising are children’s needs. I said to a minister today, it’s all about services. Our daughter has suffered terribly because of the ad hoc and bureaucratic red tape associated with obtaining services. The loss of services have been traumatic. We as a family have suffered as well. Intervention for a person with autism could mean the difference down the road between semi independence and institutionalisation.
I pay tribute to this recognition, but please note services are very poor at this moment here in Laois Offaly. We were promised alot when the disability act 2004 commenced and found services diminished because of it.
Please don’t let this be another false hope as we are hanging on.
Thank you for writing this article.
Take a look at this case from America. Truly Shocking.
Autistic Student ‘Electric Shock Treatment’ Case In Court
http://www.educationnews.org/education-policy-and-politics/autistic-student-electric-shock-treatment-case-in-court/
A court in Boston is hearing how an autistic teenage boy was tortured at the Judge Rotenberg Center in Canton, Massachusetts for failing to remove his coat.
Andre McCollins is suing Rotenberg and three of its staff for tying him down and giving him 31 electric shocks over a seven hour period in 2002. Video footage shows the teachers laughing at the then 18 year old boy who was left in a three-day coma. Doctors have testified that the torture could have cost him his life.
‘He was essentially in what we would call a catatonic condition. That means a condition that happens with people that are acutely psychotically disturbed and they let him stay in the facility basically sitting still, not eating, refusing fluids for the most part, for the next few days. They’re lucky he didn’t die,’ expert witness Dr Marc Whaley said. ‘This violated — in a gross fashion — accepted standards of care,’
The school has been criticized in the past for its adherence to outdated electroshock methods and still provides literature claiming that the electric shocks are nothing to be concerned about. While the school claims that the treatment is effective with no adverse side effects, but that claim is looking dubious in light of the video evidence clearing showing adverse side effects and the boy crying out and pleading with his captors. In 2010 the UN labeled the technique as ‘torture’ and appealed to the Obama Administration to end its practice.
Dr Whaley went on to say that McCollins had been permanently damaged by the experience and has no immediate prospect of independent functioning. He is institutionalized by the state and heavily medicated.
State Senate President Therese Murray has called for action to ban the facility from continuing to practice shock therapy; describing the treatment as inhumane.
Testifying yesterday his tearful mother Cheryl, who sent him to the private school for disabled children said: ‘I never signed up for him to be tortured, terrorised, and abused. I had no idea—no idea—that they tortured the children in the school.
‘I couldn’t turn Andre’s head to the left or to the right. He was just staring straight. I took my hands and went like this (waves hand in front of her face), he didn’t blink.’
You will find that there is also very little regulation here also. Although I don’t know of any case as severe as the above incident which is truly deplorable, I do know of ‘private’ facilities here that are self-regulating and very secretive in what goes on behind their doors. Most of the young children they teach are non-verbal so cannot let their parents know if they are bring maltreated. I do know of one incident where a young child was very distressed every day after he was dropped off, having meltdowns and head-banging and the parents weren’t told about it for months.
This bill will hopefully bring much needed regulation and increase services. And also continue support into adulthood. These children and adults have so much potential and can become extremely valuable contributors to society if provided with the right level of intervention and understanding. I have yet to meet a child on the spectrum who isn’t an expert at something.
My little angel was diagnosed with mild to moderate autism a year ago. The services where I am are total crap. We are suppose to have am autism liaison nurse but she only saw us once made some very rude comments and was never seen again.
We have a psychology department but can’t access it because the two psychologist’s are on maternity leave. He is on the high priority list for speech therapy and has been seen twice. He has seen his occupational therapist 5 times. My wife was sent on a speech course (hannen) but its not aimed at autistic kids.
We got leaders from his GP, paediatrician and various therapists for the DCA and that was refused for luck of evidence.. We were awarded it when we threatened legal action for there stupidity.
So if you ask me Ireland is a load of crap when it comes to Autism
By the way I live in Kilkenny
I agree the Hannon programme is a waste of time
Other disabilities are not as ” hidden”
As autism and are dealt with from the outset. It is not that families of children with autism are looking for more than those with other disabilities just looking for services to be delivered to these kids. If you have a child with autism they are most likely not given a diagnosis before age 4 whereas children with other developmental disorders, are already receiving services from early on, we have to fight longer and harder for everything due to poor awareness of what autism actually is,even among the medical profession.!! Something needs to be done about the poor treatment of higher functioning children in our schools also. The spectrum is broad and this is also not recognised, children suffer psychological damage later on due to their needs not being met. We have a long road to go but it is certainly not a case of looking for more than others, our kids don’t get the same at the moment.
As this bill covers adults on the autistic spectrum unfortunately it will not improve the services for children. I have worked in disability services win Ireland with both children and adults for 20 years and it is shocking the lack of understanding and knowledge that exists about autistic spectrum disorders even amongst people working in the services. What many fail to recognise is that the supports needed by a person with an autistic spectrum disorder are vastly different from other disorders and that there cannot be too standardised an approach as each individuals support needs are unique. It is my experience that the sensory processing difficulties which many people with ASD live with are vastly under treated. I have worked with people whose quality of life has been vastly improved with regular high quality sensory integration programmes . Just to give examples of what it may be like for some people with ASD. A person may not be able to bear wearing a shirt with a collar as it can feel like they are being choked. A person may be hypersensitive to everyday sounds or bright lights. A person may find it hard to process where their body is in space so while walking on even ground may be ok if the ground becomes any way uneven it becomes very scary. Electromagnetic rays from normal household appliances can cause stress. A standardised evidence based best practice approach is desperately needed to improve the lives of people with ASD and their families.
Seriously people, why do one section need a separate bill of rights? Aren’t we all equal citizens and our rights are enshrined in the constitution. It’s incredible one section of society is treated separately to another, in this case one disability over another with this bill. This bill flies in the face of the social ,Odell of disability where it emphasis inclusion and equality!
So you are suggestion Autism doesn’t need services???? You are wrong
Mr o cuana made no such suggestion. He was merely pointing out what he saw as possible inequality in autism being accorded special ‘rights’ over and above other disability.
I don’t see having getting no service now and getting some services now is inequal to others
We were waiting over a year before we met the nurse dealing with autism in our area because of cutbacks in staff and we are also in the high court fighting to get what our son is entitled too
Hi smiley, so what you work in the area of asd.? I live it and attend many workshops and groups where I meet parents. Diagnosis is not always the road to benefits. I have yet to meet what you perceive to be scammers. I’ve met many teachers who do not believe that dyslexia exists or that problems with children are caused by the autism spectrum, they have been proven wrong many times. The reason the diagnosis takes a short time with the professional you refer to is he knows his stuff and listens to parents. 20 minutes is all that’s needed there as that is usually the end of a long list of visits to many other professionals. And btw the EI and hse teams are not always as good as they should be, it’s like being on a carousel until your physically sick in the case of autism!!! 20 minutes is more appealing than 30 months believe me no amount of money will compensate for what parents are put through
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