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?
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!
Ordinary Hopes 
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
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Thank you. It is really hard to know if we are doing the right thing. I guess all we can do is keep learning and keep trying.x
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I self-identify as autistic and spent a decade supporting educationally developing young persons. My thinking chimes with all that you here say.
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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.
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This is so poignant for me… it’s hard to figure out what’s a “difficulty” versus what’s just Max being a kid sometimes. I needed the reminder, so thank you! x
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This makes so much sense x
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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
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Thank you so much. A light bulb moment for me.
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I feel so much better just for recognising it and taking a decision to change my thinking.
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As an autistic (though not diagnosed until this year), I really wish my parents had had this revelation earlier!
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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.
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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.
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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.
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This makes so much sense. For all children I think.
Do you ever feel everything is blamed on the disability, when actually some of it could be personality as well?
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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.
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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
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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
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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
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It really is true. I don’t think my son could cope at all in a classroom situation any more.
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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
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Somethings can be overcome, somethings not. In someways, what is a difficulty anyway – what we think it one. Not all things are difficulties and not all things need ‘fixing’. super post – thanks so much for linking it to #spectrumsunday
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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.
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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.
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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
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It makes so much sense to teach autistic kids and their families that it is completely okay to feel the way that they do about things.
Life has felt so much better for us both since I stopped feeling pressured into “helping him overcome things”. If anything, he is actually doing more since I stopped forcing him into situations. The knowledge that he can get away from anything at any time often enables him to take part and stay with an activity.
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I will always be sure to remember this in my practice. Again, thanks for sharing 👍🏻
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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
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Yes, yes, yes!! As a mum of an 8 year old autist and 2 other children I totally agree. Thanks for voicing it.
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Life has been so much better since I changed my way of thinking. I wish it was something professionals would tell us.
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I think the trouble is some professionals would struggle with this way of thinking. So useful though for our children as well as ourselves.
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I have Asperger’s and hate being in a room with a large crowd of people–I will run from this kind of situation and find a corner to hide in by myself. This also gets in the way of my taking college classes; I am always the student that scoots into the aisle when someone sits next to me that I do not know. I am also hypersensitive to sound and touch. I carry noise cancelling earphones with me everywhere to abate loud noises that bother me. I also do not let people get too close to me for fear they will touch me.
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I so understand this post.
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This post is great <3!!! It is sooo very important to remember everyone has their own personality, and though we need to guide kiddos to at least try new things and to accept certain experiences… we cannot expect them to like everything we THINK they should like. Great post 👍🏻 Super eye opening
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Thank you. Our lives have all become less stressful since I have changed my thinking. My son has a great Clinical Psychologist who has been both supportive of the method and very interested in the results.
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I absolutley love this post! Well said!
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Thank you. Our lives have improved so much since I realised this.
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I love this post and you are so very right. I think sometimes we need to stop thinking about it as autism and just think how can we look at this differently to make things easier for them. My son hated group swimming lessons and just couldn’t cope, so he had 1:1 and now he loves being in a group (many, many years later)
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The realisation that it was me who had to relearn and rethink things has transformed our lives.
This afternoon we had what will now be the final appointment with the clinical psychologist – because we no longer need them! He has come so far since this moment. We still have difficulties but they don’t feel insurmountable. He is brushing his teeth and is no longer so scared of traffic that he can’t go out. Life is moving forward, and I am quite certain that removing the pressure to do things is what has actually enabled him to move forward so well.
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It is sometimes difficult to accept that your child is happier not doing the things that you would expect them to do. I guess it does feel like an epiphany..
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