Ms Amanda Fox:

I am here in personal and professional capacities. For the past seven years, I supported autistic adults in Cara, an autism support service in Waterford. A couple of years ago, one of my clients said to me, "You are autistic, too." I replied, "I am not autistic; I am neurotypical." I had a think about it, processed it and realised that my client was correct on a few points. In the past seven months, my two children and I now have diagnoses of autism and ADHD. We are a fully neurodiverse family at this stage. I am here to support two of my clients but also to speak about some of the major gaps I have seen in my life as an autistic adult, though I have only been aware that I am autistic for a short time, as well as through my work.

The first issue is the application process for disability allowance. The process is far too complicated. It takes me, as an expert, six sessions with an autistic individual to get the information and to get the individual to gather the documentation that has to be submitted. As an autistic expert, I write a professional support letter to go with the application. Even then, it is often the case that the application is rejected and we have to repeatedly go back. It takes months, sometimes years, for the person to get the financial support to which he or she is entitled. It is very distressing for those applicants. People end up in debt and with nowhere to go. That is definitely something that needs to be changed.

I am sure assessments have been discussed already but the only way adults can currently access an assessment is privately. Many of our clients do not have the money to fund that. It is a very difficult process when they are not able to access supports either. They cannot get the financial and other supports they require and that means they are alienated from society on a much bigger scale. I am not just talking about the psychological assessments to get a diagnosis; I am talking about occupational therapy assessments, which are very important because all of us have some kind of sensory requirements. Many of us are not even aware of those requirements. I was 46 when I was diagnosed. I have masked for so long that I have no idea about my sensory requirements except that I know that I am very irritable for most of the day and, by God, my husband bears the brunt of it at night, although he deserves a lot of it. There are also psychiatric assessments. There are a lot of co-occurring diagnoses with somebody who is neurodiverse and that sometimes needs psychiatric assessment and supports.

Reference was made to the links into mental health services. Unfortunately, as soon as a person receives an autism diagnosis, the mental health services tend to shuffle the person out of the queue and refer him or her on to other services. Although we, as an autism support service, are delighted to keep supporting our clients, there are areas in which we cannot support them but, rather, need the mental health services to do so. If the mental health services are not willing to do that, they should make sure autism support services are funded with psychiatrists, psychologists, occupational therapists and educational psychologists. Most autistic people have co-occurring things like dyslexia and dyspraxia for which we need educational supports. Many of us may have struggled through school and are now going back to college at an older age and still need those assessments and supports.

As regards housing, there is a massive gap. Most of my clients have been on a housing list for seven or eight years. Ideally, going forward, specific housing, such as apartment blocks or whatever, should be built. Even those who are very independent and can live in an apartment will need some kind of maintenance support workers to be available to them. We have bad days when we burn out or melt down and, if we cannot cope, we need a professional with whom we can link in for the small stuff, such as where to find a plumber.

When it comes to driving, the situation is not set up for us whatsoever. Of course, if one can afford an automatic car, that is fantastic. There are still problems relating to the driver theory test, however. I do not know if any members have sat that test lately. The questions are completely overcomplicated and use big words unnecessarily. After all that, they throw in multiple choice questions, which are problematic for an autistic brain. An autistic person may read the question and think that he or she knows the answer but then three of the four options are very similar and the person decides he or she does not know the answer. The only accommodation one gets get for the driver theory test at the moment is extra time and a quiet room. That is not what we need. We need the questions to be completely revised or, at least, to have an interpreter who can tell us exactly what the question means. As regards the driver test itself, there are not really any extra accommodations apart from a little extra time being allowed. It is not always sufficiently clear for us. The tester may tell the driver that he or she will be turning left at a particular point. We need people to be much more clear and focused and give us a little bit more processing time.

In the context of education, I refer to level 5 QQI accreditation and post-leaving certificate, PLC, courses. I recently found out that many of the adults in Waterford with whom I deal who have late diagnoses and were trying to access a level 5 PLC course are only entitled to the accommodations they had while in school. I do not know if that is the case across the board. Of course, as they were not diagnosed in school, they do not have any accommodations. That needs to be considered because it means that people are being excluded from education. In general, the colleges offering courses at levels 7 and 8 are very good. They meet with the individual, see the new diagnosis and then put accommodations in place. When it comes to exam questions, however, they are not set up for us in any way whatsoever. The questions are over-complicated and, half the time, autistic people do not know what the questions are asking. A person who has great potential could come out with very low marks or having failed because he or she has misinterpreted the question completely.

On transport, I have clients who need support dogs but they have fallen through a gap. They are not eligible for such dogs and cannot travel as a result. A client of mine very cleverly trained herself in animal training and completely trained her dog as a support dog but, because she does not have the correct paperwork, she cannot travel. She is isolated in her small town because she cannot travel anywhere without her support dog.

It is very difficult to access employment. The traditional ways of accessing employment, such as interviews and application forms, are not autism-friendly. A person can even be marked down on eye contact, body language or facial expression. Those are all things with which we struggle and of which we are not even aware much of the time, especially if we had a late diagnosis. I thank the committee for its time.