Mr. Adam Harris:

I thank the committee for the invitation to appear before it once again and for the very extensive engagement we have had with it, both collectively and in terms of engagement with individual members, since its establishment last year. This committee has worked hard to put the voices of our community front and centre. We appreciate and warmly welcome the positive, solutions-focused approach.

In contributing to today’s session, AsIAm hopes to draw the committee’s attention to several key issues and priorities as members begin the challenging work of distilling the extensive insight they have garnered into tangible recommendations that will deliver real change on the ground for autistic people. As a starting point, perhaps it is useful for me to point to our recent Same Chance report, which was published to mark World Autism Month. The Same Chance report provides something of a state of the community report or insight into what life as an autistic person is like in Ireland today. It paints a stark picture. More than 1,603 autistic people are represented within the report and 90% of people do not think the Irish public understands enough about autism. Some 91% believe that being autistic is a barrier to being accepted by and making friends with others. Some 38% believe they have experienced discrimination in the past 12 months on the grounds of being autistic. Some 61% do not believe the education system is inclusive and 75% shared this view in respect of the health system. Some 61% have experienced barriers to accessing mental health services on the ground of being autistic and 68% are on waiting lists to access services. This is just a snapshot of an extensive report that is available on our website. Perhaps the most startling statistic in it is 86% of people who are autistic do not believe they have the same chance in Irish society. That is why the work of this committee is so important. It is about ensuring that autistic people have the same chance in every aspect of Irish society, no more or no less.

We accompanied this work with an attitudes to autism survey in which we polled a representative sample of 1,000 Irish adults. We see positive increases in awareness, for example, 80% of people are now aware of autism as a clinical diagnosis and more than half of the community now knows somebody who is autistic. Interestingly, 46% of people point to a family member, either in their immediate family or their wider family circle, who has an autism diagnosis. However, less than half have a good understanding of autism. The reality is that while people who know autistic people are more likely to point to positive attributes of being autistic, there are still worrying stereotypes within the community about autistic people. This is important to the ambition of this committee’s report. There is a very significant recognition of the barriers our community face, with 57% of the general public recognising that autistic people are treated negatively in a different way.

Having painted that backdrop, at this stage in the committee’s proceedings, it is the best use of members’ time for me to go straight into some specific perhaps guiding points around the drafting of the recommendations of the committee. The first is that implementation is key and only appropriate legislation will deliver it. A recurring theme and point of discussion throughout the committee's work has been the importance of implementation. Many members of our community can point to numerous policy initiatives over the years that were promising and that reflected community priorities but that sadly simply never became reality. They became reports gathering dust on shelves. I know that this committee is determined that this will not be allowed to happen this time around. The strongest tool to at least monitor implementation would be the passage of legislation along the lines of Malta’s autism empowerment Act from 2016. To be clear, the latter is not designed to address every issue facing the autistic community, nor is it designed to create a new schedule of rights for autistic people over and above what exists for other disabled people.

This legislation would simply require the State to publish an autism strategy at regular intervals, to involve autistic people in the process of drafting and monitoring the implementation of the strategy and to require the relevant Minister of the day to report on progress annually. We know it is not uncommon for the State to have overarching strategies for broad policy areas, with specific strategies or focuses where they are clearly required.

It is reassuring for us to see broad political support for a national autism strategy and the work of the Minister of State, Deputy Rabbitte, in the proposed forthcoming autism innovation strategy. However, we know it has faced significant opposition from Government Departments in the past and we are concerned that a general election could see this go right back to day one unless the initiative is protected by legislation. We also know there is strong support for this within the general public, with 75% of the Irish public answering "Yes" to the question “Ireland should have a law in place to ensure we have a National Autism Strategy”. Unsurprisingly, 96% of autistic people share these views.

We also would say it is important that the committee align its recommendations with the broader landscape of disability policy and planning, particularly in the sphere of autism. We are conscious that several important pieces of work are taking place, including the Government’s forthcoming autism innovation strategy and the HSE's autism programme board, which is based on the HSE review of autism services in 2017. It is important that the committee consider these two pieces of work in any recommendations it might make so as to avoid conflicting plans or a watering down of any solutions. Whatever recommendations are made, it is critical that they are rights-based, human rights-compliant, evidence-based and that they regulate the supports provided. In recent times we have seen and heard about some of the dangers that come from a lack of sufficient understanding of autism and the resourcing and regulating of practices which are supposed to support our community.

AsIAm welcomes the recommendation of the Oireachtas Committee on Disability Matters on behaviour-based approaches, which have caused much harm to many in our community. We would also point out the large number of so-called therapies and therapists that operate in the field of autism that are not regulated and which practices have no scientific basis. This poses a waste of resources for families at best and exposes autistic children and adults to significant risk of harm at worst. It is vitally important that we do not continue to take a charity approach to how supports are provided for autistic people and the summer programme is just one example of where we have a system that is voluntary, that is based on the goodwill of Departments and that is not about providing for people's rights. The summer programme is just one example of how that does not deliver and the significant impact that has as a result. We ask that the committee's recommendations place a strong emphasis on all supports for autistic people funded by the State being evidence-based and human rights-compliant.

To achieve an equitable Ireland for autistic people, two distinct ranges of actions are required. First, we need timely and effective autism-specific supports, such as access to assessment, therapies and educational services. Second, we need to autism-proof every aspect of Irish society, particularly all public services, to ensure autistic people have parity of access to supports such as healthcare, social protection, employment and housing. The committee will agree, from its many public hearings, that the strength of the autism community is the many incredible autistic and parent advocates and local groups who make it up. Without their service, much of the support families receive would simply not happen as it is only in place because of their tireless advocacy for, and often direct delivery of, such resources on the ground. Most of these groups operate on a shoestring and have little to no funding. We would like to see the committee address this and support the development of autistic-led groups across the country, while ensuring every area also has access to an autism parent support group. We urge the committee to ensure that autistic people and families are centrally involved in every aspect of implementation of a national autism strategy and that a mechanism is found to retain this forum in some shape or form to continue to provide a space and support for autistic people.

I want to leave the committee with the voices of some autistic people captured within our Same Chance report. When asked “What is one thing that you wish everyone knew about Autism”, one community member said: "I wish they knew how difficult simple tasks are, like going to the shops, finding a school place, participating in community activities like sports". Another said: "I wish everyone knew how hard I am trying every day to fit in, to be accepted, to have people like me and feel like I am valued as a member of the community. I feel people view a diagnosis, in particular an adult diagnosis of autism as ‘an excuse’ or ‘being lazy’."

When talking about the challenges to participation in the community, one community member said: "Securing a school place and the challenges we had to endure to get that place amounts to absolute discrimination. It was an appalling and upsetting process." Another said: "We were asked to take our daughter out of a Santa experience because of the noises she was making other parents were complaining. We are so used to her making these sounds as she does it when she is excited or happy so we were shocked when they asked us to remove her and too upset to say anything at the time."

When talking about the lack of access to supports, one community member said: "Well they are on the books but services are lacking due to staff shortages. Only half the quota of staff are available and there are over 400 children on the books and another 271 waiting. Unfortunately you have to shout loudest to be heard, puts a terrible strain on families..." Another said: "After 51 month wait - he has had a gross and fine motor assessment and handwriting assessment from CDNT nothing else to date."

Critically, the community is also clear that it does not have to be that way. When we asked“What is one thing others could do remove barriers in your day-to-day life”, one person said: "Be our friend or partner. Do not walk through us like we don’t exist. Stop treating us like we are invisible." Another said: "Just be nicer and kinder to everyone, even if you do not know if they are autistic or not. If everyone made some allowances and if I knew people were taking their time with me and not judging me it would relieve a lot of my anxieties."

I thank the committee for its engagement and I look forward to the discussion.