Cathal Berry (Kildare South, Independent) | Oireachtas source

I am delighted to be here this morning to speak on this Autism Spectrum Disorder Bill which is very important for a number of reasons, and two in particular. First, it allows us to shine a light on another neglected area in Irish society. Second and perhaps most importantly, it allows us to speak for people who cannot be here this morning. These are the people who are profoundly autistic, non-verbal and cannot articulate for themselves what they might like to say but we speak also for the carers and families who would probably love to be here in the Gallery but because they never get a day off, they never get the opportunity to represent themselves.

I hope that we do justice to both of those groups of people this morning but no words of ours could be adequate to convey the sense of frustration that they are feeling at the lack of services or could convey the importance that they place on this Bill. This is a very important message to get across.

I have three points to make in the time allowed. I will focus primarily on the people with autism, in the first instance and I will then touch on the carers and the families. Finally, I will wrap up with what the Government could do to ameliorate the situation and make things a little bit more bearable from that point of view.

As to the people with autism, I do not need to tell the Minister of State as she is well aware that early intervention is key. Early assessment, diagnosis and intervention are absolutely essential to developing the personal skills and educational access. I know that this takes resources but one is better off paying small money early rather than big money later down the tracks. The second point I wish to raise is that the stigma is still there with autism and I am reassured that there are provisions in the Bill to address the stigma issue, which is another reason I will be supporting it. Third, it is not just access to healthcare that is the problem but access to education and employment as well. These are the three big issues from the perspective of people with autism.

For the families and carers, burnout is a very significant issue. As my colleague, Deputy Verona Murphy, pointed out, respite is a major deficiency across country, not just in one constituency but nationwide and people are completely burned out from that perspective. It is not just physical and mental burnout but there is also cash burnout. The NUIG research is very clear that it costs approximately €500 a week to look after an autistic child, per child, when one takes into consideration the loss of earnings and the additional services that they have to provide privately.

Other parents who are dealing with autistic children have come to us to say that their worry and concern is that on their death, who will look after the children thereafter? There is an issue in respect of access to employment, healthcare and education. As for the meagre services that are provided up to the age of 18, even those meagre services almost disappear from that age and thereafter. Provision of supports, therefore, for adults who have autism also needs to be improved.

As a final point, how can the Government improve things? I agree with Deputy Canney that the establishment of a special committee on autism will certainly be a help but supporting this Bill will be a big step forward for a number of reasons. First, the Bill emphasises a rights-based approach rather than a discretionary approach. I know that there are implications for resources in that regard but a rights-based approach is definitely a good way to go. Second and quite importantly, all this is asking for is to establish an interdepartmental, multi-agency committee to look at setting up an autism strategy. We have looked at this Bill forensically over the past number of weeks and the first thing that jumped out at me was the fact that there is currently not an autism strategy. It is incredible that in 2021, we still do not have a strategy. Establishing a strategy is very important because there is no surer way of not achieving one’s objectives than not actually having them in the first place.

The Bill is also reasonable because it sets out a two-year timeframe, which is quite respectable and lays out a number of helpful points that would be very useful when it comes to setting the terms of reference of that committee. There is also a nod towards cost. The Members in the Regional Group are rational people and we realise there are finite resources but there is a very explicit statement in the Bill that costings can be incremental. This recognises that there will not be an immediate explosion of resources but it can be done over time.

I also like that there is an emphasis on a public awareness campaign and for training for people who interact with autistic people in order to know how to exactly make things better from their perspective.

To sum up, Dr. James Reilly, who I have never met, has done his bit in getting the Bill this far, as has the Seanad. The baton has now been passed to this House and I would like to think that we will not shirk our responsibilities in that regard. I thank the Ministers present very much.

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