Matthew doesn't feel pain the same way as I do. That much was obvious from when he was tiny. When other toddlers fell over, they cried. A lot of them would look for their mums and then cry. Not only were they hurt, but they needed someone to recognise that hurt. Sometimes they wanted sympathy even if they weren't hurt at all.

Matt would run ahead, fall over, tumble right onto his tummy, or down on his rear and he would just pick himself up and walk off. He didn't need me to validate that he'd hurt himself, by brushing him down and cooing over him, or that is what I imagined. I mean, he was a focused and stubborn boy, who knew his own mind and didn't have time for any of that fancy *mum love*.

Then I did some reading. Well, I didn't choose to do the reading, not really. At first, when you have a child diagnosed with anything (mental illness, disease etc) then I am sure I would find you reading the pamphlets, the books, anything to find a reason WHY your child is not  what they say he/she is.

You only have to look at the five senses to see this.

Matt would give eye contact - albeit briefly, and mostly to family, but... everyone knows that autism means a child doesn't look you in the eye. So he can't be autistic, right?

Matt wasn't over sensitive to texture in his food, or to colour, he didn't demand things not touch on the plate, and he spent quite a few years helping himself to frozen uncooked food to eat (nuggets, fries, fish fingers). So, he wasn't like an autistic child that was utterly focused on one item of food.

Matt didn't react to smells like an autistic child might. The books say that smells can often make an autistic child anxious. Therefore, Matt wasn't autistic.

Matt liked to touch everything. Using a combination of his hands and his mouth he would touch, taste, feel, everything and anything. He was also more than happy to hug his family, and would often fall asleep on me. He didn't have any aversions to touch, so therefore, he couldn't be like the autistic kids who didn't like to be touched, or didn't want to touch others.

Matt has perfect hearing, but he didn't give the impression that hearing things hurt him. Of course he didn't like the hand dryers in public restrooms, but hey, those things are loud. So, he isn't autistic, just easily startled.

So I read, and I read, and more and more I was convincing myself that Matt had just a language difficulty, or just, an aversion to loud noises. He just liked to walk on tiptoes because he enjoyed it. And he didn't talk because he was just a late starter...

All these things run through your head. Took me a few months to get my head around it all, his five senses may well work as typically expected for the most part, but there were big differences. Things became obvious as he grew older. He hated loud noises, couldn't stand the dark, or the light, began to turn his nose up as most food, and wouldn't wear jeans or any hard material. He liked green, everything had to be green, and he had an obsession with vacuum cleaners (which later led to ceiling fans and pylons).

And he didn't seem to feel pain, or at least he has the highest tolerance for pain that I have ever seen.

Last week Matt boiled a kettle, and the teabags were in a container, and he was pulling one out and had a delayed reaction to his finger being in the steam of the kettle. Where most of us would curse and pull our hands away, Matt didn't realise until it was too late, giving himself a nasty steam burn.

Matt's answer, after he did actually ask our advice on what to do next, was to cover over the burn.

With a sock.

He puts his hands into a sock. Because then he can't see the injury, and the pain isn't there.

Try as we might to look at the issue medically, he won't have us going anywhere near him to help. He's currently used ten plasters that he puts on and then an hour later takes them off, and then when he sees it and it upsets him he covers it with a sock. Very much, out of sight, out of mind.

So, my autism fact on this April blog tour is actually a quote from a blog post, which can be found HERE: https://thethirdglance.wordpress.com/2012/10/07/autism-and-pain-tolerance/

"... that my ability to distinguish, sort, and categorize signals from my body is not very good. I often don’t know where a signal is coming from, and figuring out the intensity of that signal doesn’t always happen. I can have a massive response to a sound that hurt me, but I have also walked around on broken toes before, wondering all the time why my foot felt funny, but not registering that anything was seriously wrong. ..."

Thank you for visiting this post, and I hope you have a look at the master post for all the wonderful authors taking part. HUGS, RJ X



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31 comments:

  1. Angela:
    Thanks RJ for doing this very imortant post and organizing such an important event to make people aware of autism.
    As a mother of a son who is multipled disabled, meaning physically disabled, mentally disabled and on top of that has classic autisme i can't thank you enough. I really enjoy all your post but i must say i have a soft spot when you share a post with Matt (in some way or form) in it :)

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  2. So much more impact to have someone who lives with and understands autism than all the so-called experts who bleat on about numbers and cliched "symptoms".

    Great post, if somewhat alarming! I am now fervently grateful that my autistic children overreact to pain. It might be annoying, but it's definitely simpler to deal with.

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  3. Now I want to send him green socks! Amazing child , amazing family. Hugs Thank you for sharing your lifes experiences with us.

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  4. I never knew much about autism until I saw it first hand. I've learned a lot since meeting one of my best friends. Her son has autism. I didn't realize how significant his reaction to me was until much later. On the same day as meeting him at almost 3 he came up to me and held his arms to be picked up. I found out later that I was one of 4 people tat he would allow to touch him without a fit. It's been years since this and when my friend wrote a personal letter of reference for me I found out just how much that ment to her. I think having blogs and any media mention available is so great to help people understand autism. Thank you so much for sharing your personal struggles and triumphs and for stating the blog hop.

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  5. My babe has been bad about pain, when little he would be very distressed because he couldn't comprehend that the pain would end. At 14 he is still very agitated when he gets hurt. We still have very limited food varieties and whatever they are go on different plates.

    Thank you for the wonderful books and for sharing a little of yourself.

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  6. What a great post! I really admire you. All my daughters have a variety of issues. One has a unusual skin condition, another is an amputee and the third has severe asthma. We love them and would not trade them for anything. They bring such joy and make you smile.

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  7. What a great, informative and above all loving post.

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  8. I enjoyed the post I watched a programme today about a young boy talking about his autism it was very interesting and I didn't realise just normal sounds like the rustling of carriers bags had an affect on his hearing. I think Matt is so lucky to have a great family. My cat antics make me laugh every day she is a Diva!

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  9. Cinders
    You are amazing at all you do and Matt is a lucky young man!

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  10. Thank you for sharing the story about Matthew with us. It really brings into prospective how differently our minds work.

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  11. I just had an ah ha moment when you mentioned walking on tippytoes. I have a cousin who is probably autistic, she was always on her toes and had some other oddities. She is now in her 60s so I'm sure she has never been diagnosed. The more I think about it I'm sure. Would it be worthwhile to bring this up now?

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  12. I work with an autism diagnostic team. Matt sounds pretty damn awesome.

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  13. Thank you for the information and your work.
    cvsimpkins@msn.com

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  14. My nephew is a director at an organization that helps autistic young adults and older adults adjust to living on their own in Raleigh/Wake Forrest, NC. He has such a tender way with the men and women in the program.

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  15. Very educational about something we've probably all heard of but know very little about.
    Hugs!!

    aelnova@aol.com

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  16. I Shared this I know a couple people with Autistic Children You are blessed My daughter didn't start talking til she was 3 &1/2 before that she just didn't talk she still is hard to understand sometimes but she'll slowly start talking better I was never given any diagnosis It can be hard so you are a very strong Momma Now I have a couple questions since you are in a different country (I Think) What are Pylons = (he had an obsession with vacuum cleaners (which later led to ceiling fans and pylons). and Plasters? = (He's currently used ten plasters that he puts on) and Funny that he ate frozen uncooked food I've heard of kids doing that

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    1. Pylons are what carries electricity overland... big steel structures with electric cables hanging from them... and Plasters, are the what the Brits call band aids? Does that make sense? HUGS XXXX

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  17. I know only what I read (mostly at this time of year) about autism. But I so admire you and your family, and your awesome young man Matt.

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  18. I really admire your family and the Awesome that is Matt. I hope his finger heals soon.

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  19. Thank you for the post and for running the month-long tour. When you are brave enough to share your personal stories, it helps all of us understand just a little bit more. And also highlights that everyone is an individual and special - a category or diagnosis never defines wholly who that person is.

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  20. Love and hugs to you and Matthew!

    --Trix

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  21. Love the sock story. My friends son is 6 and he always dresses in a costume complete with face coverings. People think that the parents shouldn't let him do this but it makes him feel safe and he loves it!

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  22. My son has Asperger's, and as a order had several developmental delays, from rolling over to sitting up to speaking. He only said "up", his first and only word for months, until we got a speech therapist. Which led to a behavioral therapist, and him becoming my alphabet kid due to his many diagnoses. ADHD, ODD, PDD, OCD, etc. He can have his pants' waistband in a twist and not feel it, yet a neckline too snug and he'll wretch. Confusing and conflicting sensory perceptions for sure. Glad to follow this tour, and learn of other kids who don't quite fulfill the requirements of Autism, yet have traits of many spectrum disorders. Every day is a challenge for me to remember that he sees things differently, processes things differently, because at times he's just a cute kid. I'm glad this tour will bring some information about Autism's many faces, and hopefully foster greater acceptance.

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  23. Thank you for the quote. It is quite relevant in my interactions with students.
    dejamew@centurylink.net

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  24. Thank you for the quote. It is quite relevant when I think of my students and their interactions with a school setting.

    dejamew@centurylink.net

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  25. Thank you for the post, R.J. It's so important to spread awareness on topics like this. There is a lot of ignorance which leads to alienation...That's why events like his blog tour are great to enhance people's awareness.

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  26. Thank you so much for the post, RJ. I can't even imagine how hard it must be sometimes, especially since no two persons are alike and as such, not all will react or will show the same 'symptoms' as others.

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  27. Thank you so much for your post. It is very important to spread awareness on autism. The more information is available the more you can help.
    I recognize a lot in your story. My son has classic autism, a light mental disability and diabetes. Not an easy combination. He was terrified of noises too. He jumped out of his skin when hearing police or ambulance syrens. He started walking and talking very late. And still his speech is sometimes very hard to understand, but you just have to wait, because he will say what he wants to say.
    My son was diagnosed at eight years old. He now is 29. He works as a postman and lives alone with around the clock access to guidance and help. It is still a learning curve and some things he will never learn. But other times there is a tiny thing that he is getting. For him that is huge.
    So keep on teaching and guiding and most important of all accepting and loving him.

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  28. I love this post. I have a 14 year old autistic son diagnosed at age of 4. We've been through a lot trying to get him the help he needs and for a long time I though we were making great progress. and in many ways we have. He no longer bangs his head on the walls or ground. He still bites and hits himself but not as much as he use to. Loud sounds or crowds are overwhelming for him so middle school became very hard for him. Not to mention since he is high function in academics his teachers seemed to ignore that he still had autism. They would actually say things like: "well this child is lower function and more disabled than your son".... so what is that suppose to me?? Every child is different and you can't say just because one student has different strengths and weaknesses that my son needs to get his perspective corrected. Needless to say he is in a different school now. My point in saying all this is that posts like these are important to show that different doesn't mean they don't need the same amount of care and help. Autism is not just one set of issues. Everyone is different. My son is autistic, OCD and ADHD. And just because academically he could do more work they deemed he didn't need the extra help and looking after as others. He started saying he was going to kill himself. It is important to learn that there is no set sensory or delay symptoms. Ok I'm rambling. I just wanted to say how much I loved this post so thanks for writing it. :)

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  29. What a prize package and what an important message to get out! ptkat(at)live(dot)com

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