Autism is not “the problem”.

I had a moment of epiphany this week.

My son does not like being around large groups of people. He does not like being in enclosed spaces with lots of other people. He cannot work with others if there is noise going on or people moving around. He struggles with indoor group situations, becoming very anxious and overwhelmed.

But because he is my “autistic son“, there is an expectation from many that I must help him “overcome” this “difficulty“. We have tried. For many years! Yet he still hates the same things and wants to get away from them.

Last week, as I watched him struggle at one of our weekly groups, looking as though he was in actual physical pain, it all became clear.

Maybe him disliking certain situations isn’t actually a problem!

Maybe the “problem” is that I keep trying to “help” him to “overcome” situations which he just doesn’t like.

Thinking back to life with his older brother, an able-bodied neuro-typical child, I recall the many things he disliked when younger. We accepted that he didn’t cope well with those things and did not try to force him to do them. He is now able to tolerate all those things, without us ever forcing him into anything.

As a child, I hated the feeling of grass to a point where I would scream. I also couldn’t cope with sand, spiders, getting dirt on my hands, touching anything slimy or sticky and a whole host of other things.

As an adult, I still don’t like those things much but I no longer have to avoid them. I was not forced to try to overcome anything. I just didn’t like them and that was okay.

But, somehow, once your child is identified as being autistic or having learning disabilities, those same dislikes become “difficulties” which you are supposed to help them overcome.

And maybe that is where it is all going wrong.

On this particular day my son was at a group we had attended weekly for several years. He knew most of the other children and adults but was still not able to cope with being in the main hall with them. We had gone into the kitchen to decorate some biscuits, but the anxiety was too great – he was overwhelmed and unable to enjoy anything. It was a huge struggle to get him to take part at all and he looked as though he was in actual physical pain.

It was horrible to see my beautiful boy struggling.

My beautiful boy who had been brilliant at home that morning was now a shell of himself.

My beautiful boy who had engaged with learning activities so well just a few hours before was now struggling to put a chocolate chip on a biscuit!

Later that day he brought two friends home and went back to being his funky, cheery self with them. He is not unsociable and he likes other people, just on his own terms. I know that he loves his friends deeply and he enjoys the company of others as long as it is in the right social situation for him.

He just doesn’t like big group situations in indoor spaces – no matter how big the room is.

And I think I need to just accept that and be okay with it.

There are many ways to socialise, there are many ways to gain the experience of working with others. And that is where my focus needs to be.

Maybe autism isn’t the problem, maybe the problem is that I have been trying too hard to overcome something which just needs to be accepted as a part of who my son is?

Heart


 

Just to be clear, I am not saying we will stay away from groups or activities – we are just going to stop doing what isn’t working. I have invested years into trying to overcome his dislike of large indoor group situations, but it isn’t working.

We love going out and we love meeting up with other people and we will still be doing that, just in the right way for my son.

One of the biggest mistakes people make when they hear “home education” is that they assume it all happens at home, which could not be further from reality!

25 thoughts on “Autism is not “the problem”.

  1. A wonderful heartfelt writing of you and your Sons daily lives and how you have both learnt to adapt and find the right path to follow to allow you both to feel comfortable within your surroundings. My Daughter has a rare Syndrome which makes her mentally and physically disabled. We don’t get any notice or training to be Special Parents – we just have to learn as we go. I call it the University of Life – and our Degree is our Kids being the best they can of course we our Care. You are doing Great !! Xx

    Liked by 1 person

    1. Reading that is a huge help. It is hard to know how to get things right. Knowing that others who have faced similar struggles to my son agree with my thinking is a big help. Thank you.

      Like

  2. This sounds like a positive way of thinking and I agree. Our children don’t need to be made to fit in or to do things which they find difficult. We just need to help them show us what they do like, and work with that. Easier said than done of course, but we keep on trying 🙂 x

    Liked by 1 person

    1. Thank you. It is such a massive help to have an autistic adult tell me this.

      As parents, we do our best, but we could do with advice from people who really know. Thank you.

      Like

  3. Someone with sense. I spent years thinking I was helping my kids adapt and conform to how I was told by so called specialists they should act only to realise it added to their stress levels and made them worse. They were struggling to be people they were not. I soon realised it was easier for all if they were left to be as they are, originals in every way and so much happier. Not everyone fits into a box.

    Liked by 2 people

    1. Thank you. It helps so much to know that others have discovered this before me. I have spent years struggling to help him adapt and now I have had this moment of understanding everything feels brighter.

      Like

    1. I do! We all have our own likes and dislikes but for some reason when a person is disabled that preference is treated like it is an issue which needs correcting.

      Like

  4. I love this. Completely how I feel with my son sometimes. It’s a difficult to judge situations sometimes. Especially when I’m trying to get a balance between keeping him comfortable and letting him experience some different things, as most things are out of his comfort zone so this post is very relatable x

    Liked by 1 person

    1. It is really hard. And it is so easy to feel under pressure from professionals and from relatives to keep pushing your child. But listening to our own instincts, without the pressure, is the best way.x

      Liked by 1 person

  5. yes yes yes! I really liked this post. I think we feel under pressure for our children to conform into social stereotypes and some of us have children who just don’t fit in like this. We waste energy trying to make them conform rather than taking a more flexible approach. At home I often completely forget that my son has ASD as he is relaxed and in control. #spectrumsunday

    Liked by 2 people

  6. I so agree with this. We do actively try to help our son find strategies to mitigate the negative impact of situations he won’t be able to avoid. But if there’s stuff I know he can work around by making practical choices, why force it? That way misery lies. I am not autistic, but I am very introverted, noise-sensitive, etc which I think helps guide us. As he gets older, I hope my son will be able to let us know what *he* wants support with.

    #spectrumsunday

    Liked by 1 person

  7. Having worked with many autistic children and young adults, this resonates with me. Some of them went to schools or therapists which used ABA to try and condition them into not showing their distress in such situations. But the ones who thrived were those whose parents and carers knew what they didn’t like, and adapted to them, as opposed to forcing THEM to try to adapt.

    Liked by 1 person

    1. I wish someone had advised me of this a long time ago. It has been a complete revelation and, since I stopped forcing him to attend things every week, and told him he could choose not to go he has relaxed. Last week, Adam attended a pizza making workshop with a lot of children he didn’t know. He stayed for the whole thing and even ate his pizza! That shows I am doing it right at last.

      Liked by 2 people

  8. This is a beautiful revaluation. Giving yourself and your son a break and and allowing yourselves to work out what works for you seems like such and kind and loving way to be with each other. I’ve been writing about self consent recently, and I think teaching autistic kids that they have the right to feel and express ‘yes’ and ‘no’ about sensations, sounds, situations is key to helping them find strategies to cope

    Liked by 1 person

  9. I was very much reminded of our son T, reading this. He is always very clear about what works for him and what doesn’t. We don’t force him to do something he’s not keen on – unless of course it’s homework – and that seems to work here.
    I found the Chris Packham documentary vett interesting and gave a fantastic insight into a teenage autistic mind, apart from the ABA, did not like that at all.
    Thanks for linking up with #SnallStepsAA, hope you can join in again tomorrow x

    Liked by 1 person

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