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Get it? A peek behind the Autistic curtain

By Chris

This article is part of My Plan Manager’s guest blogger series.

Hi, I’m Chris, an Autistic person in their mid-40s. Like many people, my disability is invisible. There’s millions of people with invisible disabilities.

Having a disability is hard, it’s even harder when people can’t see them. 

In the context of acceptance, it can be even harder than those with visible disabilities. 

People without lived experience of invisible disabilities can’t seem to understand them or the affect the disabilities have on those of us who have to cope with them. This makes life much harder than it has to be because we have to deal with both the effects of the disability and the dismissiveness of those who just don’t ‘get it’. 

Looking at me you’d think I’m okay but on the inside life can be hell.

If my neighbours play their music too loud it literally hurts my ears. When they smoke, my sense of smell is so strong it makes me nauseated, even with all my windows closed. 

What makes it even harder for people to get is that my mental health isn’t constant, some days are okay, some are bad and some are absolutely hellish. 

With heightened senses I have two choices, try to adapt or medicate myself. Don’t misunderstand – there is no medication or ‘cure’ for Autism, it’s not a disease. But there are medications that lessen the amount of sensory input my brain has to deal with. Unfortunately that’s only a short term patch and has unwanted side-effects. 

Trying to adapt to the world around me would be preferable but it’s a lot like asking a person with no legs to climb stairs, they can crawl up but it’s hard, slow and painful – not to mention cruel. . 

My sensory issues cost me a lot in terms of quality of life and friends. 

There are many activities that other people enjoy that I’m just not able to do. Socialising for even a short time requires advanced mental preparation to deal with and several days to recover from it. As for things like parties or a nightclubs, forget about it. For me, those places are sheer torture. 

One of my best friends asked me to be his Best Man at his wedding – he means well but he really doesn’t get it. Sadly, I had to decline his offer. I felt awful. There was no way I would have been able to handle that, even medicated. Unfortunately, we don’t talk much anymore because he just didn’t (and still doesn’t) get it. 

Remember, just because someone has a disability that’s not visible, doesn’t mean it’s imaginary. 

It’s important for our mental health – those of us who have invisible conditions – that we are believed, treated with respect, and taken seriously. When we are treated dismissively it is not just hurtful, it causes a loss of trust in other people, in ourselves and can lead to psychological damage or even suicide. I know that last part all too well. I lost two friends to suicide because their mental health issues were never taken seriously.


Hi I’m Chris. I’m a 44 year old Autistic Person. Originally from California, I ran away to Australia as soon as I could. Raised in the country, life wasn’t easy with an invisible neurological difference especially when that difference wasn’t even widely known about. On top of that I didn’t even get a diagnosis until I was 39 years old. Looking back I now realise how miserable I was and how badly I was being treated by everyone. Looking forward I want to leave behind some small piece of myself that maybe, if I’m lucky, might make a positive impact.

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8 Comments

  1. Kerrin

    Thanks for writing this Chris it was really insightful

    Reply
  2. Kathleen Edwards

    Thank you for sharing as I am a mother of 26 year old son . I hear you loud and clear . I have seen my son try to understand why people are just plan out rude and no manners all understand
    as I say they have no empathy at all . it been a lot of hard I mean bloody hard work but as I say I say you deal with it the best way you can and it been in dark some days .
    I am very very proud of the mazing young man he has grown in to and I do it all over again some days . he is better than 99% of main stream people that is word I have heard all of he life some people should be just ashamed of there selves for rudeness there show me as mum he big sister but first of all him my son . love to all children teenagers young adults and families Carers
    Thank you

    Reply
    • Sophie

      Thanks for sharing your story too, Kathleen. We’ve passed your feedback on to Chris and he’s really happy to be making a positive impact.

      Reply
  3. Sue

    Sharing your story leaves a positive impact Chris. It allows me to become aware of how life is for you and educates me, hopefully to be more sensitive and change my perceptions. Thanks for sharing. Sue

    Reply
  4. Allison

    Thank you for sharing. My 2 0 y.o. has autism and we are now estranged from all his aunties and uncle, (on my side) because we weren’t believed.

    Reply
  5. Jane Crawford

    Hi Chris, thank you for this. I am 49 and have only just found out I am autistic.

    I think ‘I get it’ and REALLY get the bit:
    “When we are treated dismissively it is not just hurtful, it causes a loss of trust in other people, in ourselves and can lead to psychological damage or even suicide.”
    I have been living this, particularly since discovering another neuro condition in 2010. Do you think any specialist has tried to take care of me and take me seriously – NUP!

    Is there anyway we can get in touch? Perhaps through MPM?

    Reply
  6. Tania

    Thank you Chris, I have a 8 year old with Autism, some days are good and some days he is very hard to deal with. We have to accept all people as individuals. Autism can make a person much more interesting and original than main stream people. My son can’t read, but he is very verbal. He always amaze’s me with the stories and passion he has for the things he loves. I wouldn’t change him, as he is a charming polite little man. I hope that his future is bright and acceptance of Autism is not a given but born out of love, for the individual
    I worry for his future, but with more information about people who have and best understand Autism, I gain confidence that his life ahead will be better, than the people who have come before him. Educating society is important, about all disabilities. Acceptance is the hard part.

    Reply
  7. Lisa McLennan

    Thank you, I really appreciate seeing autism, and invisible disabilities in general, given space and lived experience represented so well. I am 44, only recently diagnosed with autism, and have many similar issues.

    Reply

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