Ms Margaret Lennon:

In my case, my son regressed very suddenly when he was quite young and I thought I would go to my GP because he would know why. He is a lovely GP but he did not know. My son was referred to have grommets because the GP assumed it was a hearing problem. It was not. We then set about trying to find out where we would go to find out what was wrong. This was some years ago and we did not have access to social media at the time. I remember looking at my son one day and I realised that I thought he had autism. The word terrified me because the only thing I knew about it was with regard to a campaigner who had been in the media a few years previously, Kathy Sinnott. I remembered her very public and horrific battle, and I thought this cannot be happening. To make a long story short, our GP did not know and we assumed our paediatrician would know. We did not realise it has to be a clinical psychologist or psychiatrist who diagnoses autism. We went around and around and eventually sourced a private psychiatrist. We were so sure at this stage that he had autism that I had decided if the psychiatrist said it was not autism we were getting the next plane out of Ireland because something was really wrong. He confirmed the diagnosis that it was regressive autism and that it was mild to moderate.

At that time there was very little available, so we went outside of Ireland to source clinicians and educational professionals to give us an assessment to allow us to know what our son needed as opposed to what was here at the time. We set about providing this for him and, thankfully, because he had early, appropriate and good quality intervention, he made exceptionally good gains.

What I have seen in the intervening years is a wave of parents coming with young children who do not know where to go or what to do. GPs are inundated. Previously one could self-refer for assessment of need. Now, the new standard operational procedure puts another layer on this, whereby there is a desktop assessment first to see whether the child can actually progress to be assessed.

This is completely unsatisfactory. I would go so far as to say it is putting children at risk and is putting parents in an extremely difficult position. International best practice tells us for every day one delays in providing an early and appropriate diagnosis and early and appropriate intervention, one's child will regress more. Where are we going to go in another ten years? How is our country going to support a generation of children who will end up extremely disabled when, if they were given a modicum of what they need, a good number of them would be able to live relatively independent lives?

On the standard operating procedure, SOP, as to whether we were consulted, the answer from DCA Warriors is "No." We were not even aware that this process was going on. We became aware last year that the HSE had announced an autism review and submissions were invited, on 16 August, to be in by 12 September. We did not think this had anything to do with the current SOP but, in correspondence that I got recently from the team that generated the SOP, it would appear that the submissions for the autism spectrum review last August were used in generating the new SOP. We sent in a submission to the autism spectrum review last year. We had no idea at all, even from the terms of reference, that this would include in any way the standard operating procedures in this regard.

As to the quality of therapy and treatment, we believe there are a significant number of extremely committed therapists and clinicians within the HSE. We also believe that they are being put under horrendous pressure. I would go so far as to say that they are being prevented from carrying out their job to the best of their ability. Most of our parents report to us that when they finally access services, such as occupational therapy, OT, or speech and language therapy, it will be for a block of maybe five or six sessions, and they might not be seen again for years. That would be our take on the questions.