Sunday Interviews: The fourth in a series of interviews with autistic adults

I am doing a series of Sunday interviews with autistic adults because their voices and opinions are so important. Hopefully the interviews will raise some awareness and understanding, as well as give parents of children with autism some insight from the answers.

I will not be editing the answers people give me as I feel it is important that the interviewees own views and feelings are shown. Every individual will have had a different experience.

The people interviewed have been extremely brave to do so and the answers are about their own lives and opinions.

Today’s interviewee is Lisa Holt. Lisa is an autistic woman married to an autistic man, who together are trying to raise 4 autistic daughters in a neurotypical world. Lisa blogs at Autistsix.com and her blog is definitely worth a read. I would like to thank Lisa for taking the time to give such detailed and honest answers, I hope you find them as interesting and useful as I did.

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How old were you when you were diagnosed and do you remember being told your diagnosis?

39 yet I don’t remember it clearly. I was diagnosed ‘something’s wrong but we don’t know what, maybe …’ when I was 6 months old.

How did you find home life as a child?

Confusing, I have significant memory gaps. I spent a lot of time as a child trying to understand what I was including considering a man trapped in a little girl’s body, a changeling, an alien, possessed and many others.

How did you find school as a child?

I found school work easy, incredibly easy and great fun. I eventually learnt how to make friends easily as I changed Primary schools 5 times as my parents moved around. Keeping friends was a different matter. My last Primary teacher was exasperated by my formality and my lack of interest in age appropriate games, I read books instead of playing whenever possible. But I also discovered that life was easier if I played a part, I got quite a rep for mimicry and acting but I did not fit in.

What challenges did you have to deal with as a child?

I was often confused, I seemed to be expected to follow rules I didn’t know or understand. People were unpredictable yet could predict each other. I was sick a lot but as no cause was found it was decided I was faking, and I realised that what I called pain was what others called discomfort and learned to hide it ( I only realised this wasn’t true after stuff went wrong during the birth of my youngest and the doctor was shocked when I didn’t draw attention when the pain relief ran out). In a fight though I couldn’t feel pain at all and felt as if time slowed down, this scared me as I was scared I might injure someone.

Did your parents do anything for you when you were younger, that you really appreciated?

My stepfather; Dad, and Mum put an incredible amount of effort into trying to reduce my stress and to try to help me fit in and feel accepted. I never doubted my mother’s love or after I accepted him my stepfathers. Unfortunately not understanding what was wrong they took advice from Medical professionals that were disastrous for me. Mum did stop the doctors’ from giving me ECT and from committing me to an institution because she had seen what it did to my father. And when the drug regime went really wrong all three; Dad, Daddy Ron and Mum, stood up to the psychiatrists and fought for me.

Do you live independently now?

I don’t live financially independently, I am a social security parasite and share a house bought by my Mum. I need support workers and Mum to give my girls’ the best chance but we could physically survive on our own.

What challenges have you had to deal with as an autistic adult?

Agoraphobia, panic attacks and paralysing anxiety have impacted severely on my life, these traits are shared by my husband and now my 3 eldest which makes it difficult to support each other. Physical (psychosomatic illness) and exhaustion also make getting on with life hard.

I also find it difficult to work with others. At the risk of sounding vain, I am a genius, with a wide knowledge and my organisational abilities are incredible, but I don’t work well with others because I can’t push myself forward and it seems impossible for NTs to remember to include me without my feeling I am being pushy.

It is also difficult to get respect when you have no qualifications (nervous breakdowns during University exams), no job, and sometimes you stim (make silly movements) or baby talk. I am not even considered qualified to speak up on autistic matters because I am impaired.

What do you like about being autistic?

I respect my moral values, I admire my own ability to be logical and I enjoy the scope of my mind. I think all these things are at least partly due to my autism. My honesty, sensitivity, sense of fairness and thinking patterns are all shaped by autism.

I also really like my abilities: to see better in the dark than most people, understand animal behaviour relatively easily and detect differences in taste and smell.

What do you dislike about being autistic?

The physical sickness, the paralysing (literally not figuratively) fear and the lack of understanding.

Is there advice that you would give a parent bringing up an autistic child today?

Coping with anxiety, self-esteem are far more important than fitting in. Any therapy primarily based on normalising their behaviour or fitting in is going to increase their anxiety and will eventually fail horrifically (years later after the therapist has declared victory). Exploring their talents and interests are actually a much better path to employment and engagement in the world. And most of all, a person can live without a job but not without at least a few people in their lives. Career wise they are more likely to succeed if they are well adjusted in other ways. Relationships are the most important part of life.

Is there anything else you would like to add?

Autism gives us unique gifts and abilities, the chance to see the world in a different way. We are not just a moral burden, our path forward is not ignoring our uniqueness and becoming a poor imitation of a real person. The world will be a better place when autistic people are helped to overcome the challenges of their sensory and social issues while being encouraged to explore their gifts. The autistic perspective will benefit all mankind. The collaboration of different neuro-types will bring the world unimaginable advances.

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If you would like to be interviewed for a future Sunday interview post, I would love to hear from you, no matter what your opinion or experience. You can contact me for a list of questions at star@autismkidsontour.com or via inbox to my Facebook page.

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