Earlier this week, as his Autism Spectrum Disorder Bill passed through the Seanad, we sat down with Senator Doctor James Reilly to hear his thoughts on the Bill’s progression, its provisions, and what inspired him to legislate it to begin with.
WHAT INITIALLY SPURRED YOU ON TO DRAFT THE BILL IN THE FIRST PLACE?
Well, maybe rather than answering that question directly, it might be easier for me to answer it this way. What first got me involved, in any form of politics at all, was Health Board, and that was the issue of Autism, because of my own son, whom I felt was not getting remotely the level of input that he needed. It just struck me that so many other kids had this problem and weren’t getting the services or the interventions that they badly need. So, I went for election on the Health Board, and I continually raised this issue. Now at that time, the Department of Education didn’t really believe that there was such a thing as autism, or at least the Department didn’t think that it needed its own specialised strategy for education. Autistic children were, at that time, being educated alongside other children who had emotional disturbances and it was doing neither group any good. I’ve had a lifelong interest since then, I was in the Irish Society for Autism and so, when I got involved in national politics, this was very much an area that I wanted to progress in.
Now, as Minister for Health, it wasn’t possible to progress it. The Department were against it and there was other opposition to it from different quarters. Sometimes as a government minister, you’re very hamstrung, whereas if you’re a backbencher or a Senator, you actually have more latitude. So I’m delighted to be in a position to have published this Bill, got it through the second stage, and hopefully, with support from my colleagues and Minister Harris, we will succeed in getting it through the Seanad before the summer and into the Dáil by the autumn.
To answer the implicit question, as to why is this necessary, it’s very clear that there isn’t a unified strategy, there’s no codified approach, that there isn’t a uniformity of service and that many parents feel isolated and somewhat abandoned in their struggle. Most people know the story of my son; from having been diagnosed as mentally handicapped and then not speaking until he was 5, not getting into a mainstream school until he was 11 years of age and then to studying a PhD in stem cell research in autism and to have this week an article published in one of the world’s leading scientific journals. Now that wouldn’t have been possible for a whole myriad of reasons, but what was so critical there were the interventions he’d gotten in his early years.
We all know it’s a range of things, again, like with my son who’d been lucky enough to excel to those who may encounter a steady stream of obstacles throughout their lives on living independently. But one thing that’s critically important to emphasis to those who mightn’t be familiar with autism: regardless of the child’s ability and or how profoundly that they might be affected by the condition, early intervention will improve the outcome and allow them to reach their full potential, no more than the rest of the population. We all have different potentials to fulfill.
So this Bill’s very different to another one that was put forward before in 2012, which only looked at adult needs. This one looks at adults and children, a continuum of care and a pathway for their development, their needs and the supports that their families need as well. It’s important to stress that this Bill’s about ensuring that there’s a strategy – it’s not about determining what that strategy should be – but it’s critical that people with autism and their families are heavily involved in enacting it.
I worked in St Ita’s Hospital, and there were many patients there with autism which were profoundly affected. I believe that many of them mightn’t have ended up there had we a more enlightened approach to autism when they were young children. For those who are at the more deeply affected end of the spectrum, we can certainly hope that they’ll lead much more independent lives nowadays. That they could be living in a sheltered accommodation, rather than an institution; they could be going to a sheltered workshop rather than an institution; to their benefit and to society’s benefit generally.
So, this Bill will allow for a strategy which, when implemented, will afford people with a clear pathway for ensuring that they get the support they need for their child, their parent and that’s ultimately to the benefit of us all.
ACCESS TO HEALTHCARE, STATE SERVICES AND SOCIAL INCLUSION FEATURE AMONG THE BILL’S CHIEF PRIORITIES IN PROVIDING FOR. EACH AND ALL THREE ARE CERTAINLY IMPORTANT BUT IS THERE ANY PARTICULAR ONE, IN YOUR VIEW, WHICH IS IN MOST PRESSING NEED OF ATTENTION?
Well if you look at the younger age group first of all, you can see straight away that there’s a mismatch between the educational facilities that are in place and the therapies required to get the best out of those. So we now have a situation where, from having a Department of Education that refused to acknowledge there was ever such a thing as autism, to now providing special classes and Special Needs Assistants (SNAs) to support them. Yet the HSE can’t equally provide the necessary supports in terms of speech and language therapy and occupational therapy. This clearly has to be addressed.
For older people living with autism, for the adults, it’s the ongoing support that can often be invisible, and they can often shy away into themselves. Third level education is a particular challenge in that regard, and whilst many of them are certainly able for the academic side, they aren’t for the social milieu if you like that very much is that time of life. When we’re all trying to discover ourselves and we’re all struggling identifying and re-identifying ourselves and making new friends and new connections, they can often get lost in all that. I mean, Trinity have put in place supports and I only spoke yesterday to Professor Brian McCraith from DCU, and they’re going to bring in the world’s first autism-friendly third-level campus, which delights me hugely.
I mean, I really think that it’s about enlightenment. We have to help the person with autism cope. The world won’t change to meet them. We may be able to achieve changes that will make life that bit easier for them, but ultimately, we’ve to help them cope with the environment that they find themselves in, just as we’ve to help all children and maturing adolescents.
So when it comes to the adults, what are the big challenges? Well, it’s about providing the appropriate educational supports in third level, in apprenticeships, in work experience, helping them become independent, making sure that appropriate accommodation is available.
HOW WOULD YOU THEN MEASURE THE BILL’S SUCCESS AS A PIECE OF ENACTED LEGISLATION?
For the Bill itself, it’ll be whether or not we’ll get a strategy, and of course we will, and then to be a matter of reviewing that strategy. That’s what I built into the Bill, there’re constant reviews of how it’ll be progressing because, just like everything else, life’s dynamic, and the world of autism is no exception to that. Different discoveries and changes come along. Sometimes in slow stages, sometimes in quantum leaps.
THE BILL’S RECEIVED SUPPORT ACROSS POLITICAL PARTIES IN THE SEANAD SINCE ITS INTRODUCTION. THAT BEING SAID, IS ADDRESSING THE NEEDS OF IRELAND’S AUTISTIC COMMUNITY, A HOT POLITICAL TOPIC FOR POLITICIANS?
I believe there is, yes, and I want to thank all my Seanad colleagues for their unanimous support. I also want to thank Minister Harris for his support as well. I think that politics is about the art of the possible. We’ve managed to keep this apolitical and we have pretty widespread support. I should also say thank you to the 20,000 plus people online who’ve supported the campaign. I’ve asked them to continue supporting the campaign because it doesn’t end tomorrow or at the end of the week. It has to go on into the Dáil and I hope that we’ll have the same consensus there. We’ve to be especially mindful of the fact that there’ll be a lot of competing pieces of legislation going through in the autumn term, so we need to keep the heat on and that the work starts on the implementation strategy. Even thereafter, I think the campaign should continue on to support the strategy’s development and actual implementation.
WHICH AREA OF CIVIC LIFE IN IRISH SOCIETY DO YOU FEEL NEEDS TO BE DONE TO ACTIVELY INCLUDE MEMBERS OF THE AUTISTIC COMMUNITY TO PARTICIPATE IN? WOULD YOU SAY THAT IT WOULD BE POLITICS?
Well, that’s the great challenge of autism, isn’t it? Axiomatic to politics are the challenges of being able to communicate effectively, of being able to network with others and influence their opinions and ideas. The former is a core deficit of autism, so obviously it takes tremendous effort to focus, to concentrate and be able to understand that politics is a language of so many different varieties and signals. That being said, I’ve no doubt that, with the right supports in place, individuals living with autism can get involved in politics and become tremendous advocates for the cause.
THE NATIONAL DISABILITY INCLUSION STRATEGY IS DUE TO BE LAUNCHED LATER THIS WEEK. WHAT ARE YOUR THOUGHTS ON IT? DOES IT INCLUDE ENOUGH PROVISIONS?
Well, look, is there every really enough? We have to operate within the resources that we have and there’s no doubt that we spend a great deal of money on disability if you look across all the various sectors. What’s maybe needed more of is more cohesion and coherence. That’s not to say money’s of no object, but what I’d like to see is closer cooperation between actors and advocates before we talk about how much money needs to be spent. I think what’s critical though, and this was something I was very proud to be associated with when I was Minister for Health, was our push and drive with Kathleen Lynch to ensure that the consumer – the actual person living with the disability – had a major say in what was to be provided, rather than the system we had in place previously which was effectively this is what we’re giving you and if you don’t like it, take yourself off somewhere else.
DOES THE BUCK NECESSARILY STOP WITH THE STATE? THAT IS TO SAY, WOULD INDIVIDUAL ACTORS AND ADVOCATES OUTSIDE OF THE GOVERNMENT HAVE THE POWER TO MAKE CHANGES AS WIDE-RANGING?
Of course they do. Ireland has a wonderful tradition in accepting difference in many respects; I mean, I remember when a house opened up in Lusk, far back as maybe thirty-odd years ago, and those who moved in were totally different from the resident inhabitants of the community. Yet they were welcomed with open arms and there’s always been that tradition of acceptance down the Protrane Peninsula of the needs of people with educational and mental health needs and of the differences people can have. Back in the old days, we’d have viewed this I suppose as ‘eccentrics.’ People looked out for them nonetheless, and that’s still there in our communities today. It may not be as evident sometimes because of nuclear family versus the extended family phenomenon, but I think that’s why it’s so important why we should have strong communities. Why we should all know one another and look out for those who are more vulnerable, help the individual who gets misinterpreted or who misinterprets other things.