Ms Regina Lautwein:

I thank the committee for having me. I am 58 years of age and am autistic. I was autistic without knowing it for nearly my whole life. I was diagnosed one and a half years ago. It was like putting on glasses for the first time – it changed my life's perspective.

I was invited to attend this meeting through CARA, where Ms Fox works in Waterford. It does a great job of providing a few hours of support for people who have just got assessments. However, I would never have known it existed if my kid had not been sent there by her college disability office after she got an assessment. She would never have known she was autistic had she not met people in her age group who were also autistic; she found that she could actually get along with people, did not feel socially awkward, could fit in and felt life was normal. When we started digging into it, I found that it was no different for me.

By the way, we could find no information on official pages. We got everything through online research and social media. When we decided that an assessment might be a good idea, there was no information on how to get an assessment. We ended up doing an adult assessment – she had just turned 18, so nothing was available for her – followed by an ADHD assessment. She had just started college. I am probably ADHD as well, but I will not spend that money because I would rather save it for occupational therapy for me or my kid, since it is not available for free.

This was my life when I was diagnosed. I want to let the committee know how that felt and how we did not get any support. I would not be here today – I would not know anything about autism – if it were not for my kid struggling.

What is my life like being autistic? I was thinking about that. It is just me. It is my personality, basically. A part of my personality is that I can hyperfocus easily when I do thinks I have a special interest in. I can see the smaller parts of the picture as opposed to the bigger parts. This helps me in my job. I am lucky I found a job into which I can put all of that. I am a violin teacher, so when I have students, their problems spring out to my eyes. I see and hear them and can fit it together. It is a one-to-one fixed setting with a teacher and a student, with just one topic being discussed. I am grand with that. I am not grand when I am in a larger setting with lots of people. Fifteen minutes of social engagement with a larger group is more exhausting for me than a whole day spent teaching. This is not the case when I socialise with autistic people, though. That is no problem. It is just different ways of communicating, and one of them can be really exhausting.

My main problem has to do with my sensory issues. I have had them all my life but never knew why. I was always told that I was overly sensitive, and I just accepted that until I found out that a sensory processing disorder can be a part of autism. I have changed things since finding out. I now have some special glasses and contact lenses that protect me from light. I will put on the glasses to show the committee how I go to the supermarket in the evening. I also have special earplugs, which I will wear now. They fade out a little bit of noise. This is how I go to the supermarket now, but I will give the committee a little demonstration of what it felt like before I found out I was autistic - it was like having percussion intruments playing in my ears. It was not only noise and light – I am also extremely sensitive to perfume and deodorant. Just imagine someone standing at your side and blowing a smell into your face that you really dislike. That is what it is like for me when someone wearing strong perfume or deodorant is standing beside me. It is my normal impression of the supermarket.

As committee members can imagine, it is exhausting when you face this for the whole day. I always felt less productive than others, I was easily exhausted and I started questioning myself for not being as productive as others. This was all because I did not know. I did not have access to information. That is understandable at my age, as there was no knowledge of this subject when I was young. I would not even have suspected I was autistic. As someone else mentioned, the image of autistic people is still the weird boy and crazy professor. I used to think the same two years ago - that was my understanding of autism. To change this, there must be a general awareness among the public. That should start at school. It was mentioned that the first time someone had heard about autistic people was in fifth year. It should be normal in school to learn about the different ways brains work – I am not only referring to autism, but also to ADHD, dyslexia, dyspraxia, etc. – and how to communicate with one another.

It is sometimes thought autistic people lack communication skills, so they have to learn to communicate. No, it is both. Autistic people do not lack communication skills when communicating with other autistic people. They lack communication skills communicating with people who have a different brain set, that is, neurotypical people. Both groups have to learn what communication really means, not just expecting people to react in a certain way because that is what is done all the time. We need to really listen to each other and really tune in. This is not so difficult to do when one knows about it. People will notice from my accent that English is not my first language. For me, it is much easier than for a lot of other autistic people because when I make social slips or do not express myself the right way everyone thinks it is because I was not born here, so it is fine. In the 15 years I have been living in Ireland, I have never experienced any problems.

People want to communicate with people but they do not know how and they are slightly afraid, because they do not know about autism. Much more has to be done on raising awareness. Assessment should be accessible for adults and support should be available. That is not just my idea. In a review in 2018, the Department of Health stated there should be assessment and supports available so it is not really something new. Raising awareness is very important and it has to start in school with the teachers and other professions and go out into the wider society. If no one tells a person that they or one of their family or friends may be autistic, they will never know. People in this position cannot find out and cannot protect themselves like I am doing today. I think the committee is on the right track by starting to listen to autistic people. I hope more awareness will be promoted in the future.