Dáil debates

Thursday, 29 April 2021

National Autism Empowerment Strategy: Motion [Private Members]


5:50 pm

Photo of Alan KellyAlan Kelly (Tipperary, Labour) | Oireachtas source

This is one of the most important issues we could be dealing with. I am delighted, and also shocked, that the Government has actually accepted our motion. It is incredibly important and something in which we fundamentally believe, but it is also very critical of the Government. In that sense, I am delighted the Minister of State's Government has accepted that criticism.

I start my contribution by telling a powerful story, written by a parent of an autistic young kid:

I can see Sarah is excited as I collect her from school. She squeezes my hand and tells me she has been invited to a birthday party. Sarah is 7 and has Autism. This is the first time since starting school she's been invited to a party. Molly from her class put invitations in all the schoolbags Sarah tells me. We get to the car and Sarah starts searching her schoolbag but can’t find the invitation.

So I start searching too, and realise after emptying the bag that I shouldn’t have. I can see Sarah’s face drop as the reality sinks in. I hug her as she sobs and explain that maybe Molly could only invite one or two girls, maybe Molly forgot to put the invitation in her bag? We both know this is unlikely. But I have to try to say something to make my girl feel less hurt and rejected.

This story was outlined in a recent article by Lhara Mullins from the National University of Ireland, Galway, on RTÉ One. It truly pains me every time I read it but it is a very common story and one which many parents of autistic children will recognise. It encapsulates the hurt, rejection, social exclusion, suffering and constant trials which autistic children and their parents must endure because they are excluded, and for no other reason than being absolutely brilliant.

The truth is that the State, the very entity that should be standing up for our autistic citizens and their rights in our society, appears to be hell-bent on excluding autistic children and their parents from that same society. Whether it is keeping dossiers on children for use in court proceedings, breaking its own laws by having waiting lists for assessments of need that are, on average, three times longer than is allowed by the State or the adversarial approach it has taken to the autistic community again and again, the State continues to be in dereliction of its duty to its own citizens. The State's treatment of autistic citizens is a stain on our Republic and that cannot continue.

As a result of this failure by the State to provide the support it should to autistic citizens, stories like Sarah's are repeated across the country every day. These are stories of exclusion, hurt, isolation and despair. The Labour Party brings this motion before the Dáil because we want it to declare this evening that, when it comes to the shameful way in which this State has treated it autistic citizens, enough is enough. We want it to declare, once and for all, that autistic children and adults and their families deserve to be fully included in Irish society and that they will get the support from the State they need to make this happen. We in the Labour Party are standing by autistic citizens, young and old, and by their families.

In advance of tabling this motion, we asked for people to tell us their stories of what it is like to be autistic in Ireland. I will refer to one of the submissions we received. The person in question was diagnosed at the age of six, their parents having had to get this carried out privately. This person says that, as autism is a very stigmatised condition, they do not usually disclose it. The person was bullied in school because of it and the special needs classes were not aimed at this person's specific needs and so did more harm than good. These classes were also scheduled at the same time as Irish classes, even though this person is not exempt from Irish, because of the belief gap in the education system with regard to autistic people. The person says it hurts that many people use the term "autism" as a pejorative and that, as an autistic person, one's abilities are often doubted, which can be patronising. This person has co-morbid hypotonia, low muscle tone, and Tourette's syndrome, has difficulty with walking great distances, writing and other physical activities and gets back and leg pain because of the hypotonia, which was not properly treated with occupational therapy and physio as a child. While it is not curable, this person would have a lot less difficulty now if they had received those services in time.

We in the Labour Party have listened to many stories such as this, stories of autistic citizens being failed again and again. This is why we are tonight demanding radical change in how this State supports its autistic citizens. In our motion, we demand that the Government produce a national autism empowerment strategy by the end of July and that it establish an Irish autism advisory council, modelled on what is working in Malta. We are calling it an empowerment strategy very deliberately because it is time that this State and wider Irish society recognised the unique talents, gifts and perspective which autistic citizens can bring to dealing with problems we face. We want autistic children and adults to feel included, involved and empowered as members of Irish society because of the many gifts which they have.

For anyone listening who doubts what I am saying or doubts the great potential of people on the autism spectrum and what they can offer to society, perhaps it is time they heard a list of people from history who are either confirmed or strongly suspected of having been on the autism spectrum. This list was compiled by Michael Fitzgerald, professor of psychiatry at Trinity College Dublin. The long list includes Albert Einstein, Isaac Newton, George Orwell, Beethoven, Hans Christian Andersen and Immanuel Kant, all of whom are believed to have been on the autism spectrum. Another such person is Wolfgang Amadeus Mozart, whose hearing was famously so delicate that loud sounds would make him physically ill, a telltale indicator of being on the autism spectrum. The list goes on and on.

Labour wants this Dáil to adopt this motion this evening to send a message to our autistic citizens and their families that they are valued, that they belong, that they have a wonderful contribution to make to Irish society and that the manner in which the State has been treating them is wrong and will now change for the better. We understand that the Government is not going to oppose this motion, which we welcome. We also welcome that, by accepting this motion, the Government is committing here and now to put in place the national autism empowerment strategy by the end of July, as called for in the motion. If the Government does not follow through on this, given that it is not opposing the motion, it will be letting all of these citizens down.

Do not let them down. They have been let down for too long.

We take from the Government's agreement to the motion that it is committing to establishing an Irish autism advisory council. I want the Minister of State to confirm this in her response. If the Government accepts the motion but fails to implement the national autism empowerment strategy or establish an Irish autism advisory council, it will be failing all of our autistic citizens.

By accepting the motion, the Government is finally admitting that it has failed autistic families through long waiting lists and that the internal Department of Health report on the compilation of dossiers on autistic children was unacceptable. We look forward to the Government shortly initiating a review, one commissioned by a body other than the Department of Health, as called for in the motion.

I acknowledge that we have serious problems not only with assessments of need, but also with the way in which the roll-out of autism spectrum disorder, ASD, units happens. There are many gaps. I have had to fight and fight to get ASD units for my home town of Nenagh. It is the second largest town in Tipperary and the largest in north Tipperary, but there was not a unit in it until recently. That is not good enough. This situation is replicated in many other places around the country.

I acknowledge the work of AsIAm, Mr. Adam Harris and his team. I acknowledge the work that has been done to make Clonakilty Ireland's first autism-friendly town. Approximately a year and a half ago, I called a meeting in Nenagh about turning it into an autism-friendly town. I expected maybe a dozen people, but a couple of hundred people turned up or got in touch. We have formed a committee. Mr. Martin Slattery is our chairperson and Ms Emma Burns is our secretary. We also have Ms Louise Morgan-Walsh, Ms Noelette Brohan, Ms Carolyn Bracken and the amazing Mr. Nicholas Ryan-Purcell. I encourage everyone to get involved in setting up such groups across the country because the changes they bring about are incredible. Doing this ensures that people with autism know that there is a friendly environment in which they can evolve and grow and in which they will be part of a community that embraces them.

I will end by acknowledging the incredible work done by Mr. Ryan-Purcell. His film, "This is Nicholas - Living With Autism", which was released in February 2019, has had a significant impact for people with autism. I ask everyone to watch it.

I welcome that the Minister of State will accept our important motion, but we will follow up on it and we will know by July if she means what she says.


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