An article I wrote in 2012 for last year's blog hop... amended 2014...

I was asked by a friend online in 2012 "How did we know Matt had autism?"

That is a really interesting question. To the left is a picture of Matt taken last year.

The first thing you'll notice about Matt is that he doesn't look any different to a *normal child*. He looks like a normal, neurotypical, child.

He wasn't born with a label, or a physical manifestation of what was going on inside his head. His birth was a good one. Easy even compared to the pre-eclampsia I had with B. He was born a health 8lb3oz and his scores straight away for the normal stuff were perfect. We were out of hospital in less than a day.

B and M were both good babies. Both slept through the night more or less straight away and M was a greedy baby who finished every bottle (unlike his sparrow like sister!)

B was the last of my antenatal group to walk and she loved sleeping, she's lazy like her mum! But Matt was climbing out of his cot at eight months, and walking at nine months. He was a determined little boy but he was prone to tantrum type crying and he wouldn't listen to the word *no*.

By the time he was one he was copying his dad (who works with computers) and he would take a screwdriver and poke it into electric sockets. Not good as you can imagine.


Physically he was normal, on the 75th percentile and growing well; but his fascination with vacuum cleaners was just starting. He would stare at them, climb on them, take them apart. If he couldn't get into the cupboard to the hoover he would determinedly try and break in. He would pull at locks and doors and pull and pull until even the strongest locks would give way. Not the locks themselves but the wall, or the wood, around them.

He wouldn't stay in his room for naps, in fact he wasn't that interested in sleeping and naps. To keep him in his room to sleep at night we had to literally block him in his room. The room had to be emptied of everything except his mattress and some toys as he would pull drawers out and pull over cupboards such was the strength he found when he was mid tantrum.

His sister is the best big sister a child with special needs can have. Being the sibling of a special needs child is hard. Really hard. It is also rewarding and loving. But at the core it is far from easy.

In the UK, (and I don't remember accurately at what time - two maybe?), the health visitor is booked to assess child's progress against a set of *normal averages* that could be expected. Matt was off the chart. In a good way he was physically strong. In a bad way he was physically strong. :-( He had obsessions, he wouldn't sit still, he wouldn't listen to instructions or learn from mistakes. He was stubborn, intractable, and obsessed. He didn't interact with other kids, nor was he able to take turns or share.

She referred us to a special child psychologist. At this point we felt like the worst parents in the world. What were WE doing to cause this? Were we not strict enough? Was I too depressed? The questions you ask yourself are terrible like it is YOUR fault that your child is a screaming mess of chaos. There was no peace from it. Ever. I mean, what kind of normal parents lock their child in a room just to get sleep. But we had to, just for our sanity. He would sit and rock a little, and he took to sometimes banging himself on the radiator, luckily for us these early autistic traits went no further.

When we went to the psychologist, I guess Matt was just over two, he was climbing her bookcase to the ceiling. no joke. Hubby was stood trying to keep him safe, I was in meltdown and shock. Then she said one sentence that will live with me forever. She said, "goodness, I don't know how you have managed for so long without help."

At just over two Matthew was fitting every single tickbox for Semantic/Pragmatic Language Disorder. But he wasn't autistic. He couldn't be. Then they added the short sentence *with associated social communication difficulties* and that, for want of another explanation is autism.

Matt and his obsession with ceiling fans

Matt is the most difficult, most rewarding, intelligent, exasperating, normal, not normal, child ever. He was in nappies (diapers) until he was five and will happily eat frozen food from the freezer such as fish fingers or frozen chicken. (The fridge is locked in the garage now!) His intense focus on hoovers lasted until he was maybe 8 ish. His focus is now on ceiling fans (spinning items is a very common thing for autistic kids to focus on) and on Pylons (they carry electric across the fields - not sure what you would call  them outside the UK). He has a high threshold for pain. From being a baby when he fell over he would just dust himself off and carry on. He never looked for sympathy or hugs.

We are lucky. Matt is verbal, although it is sometimes difficult to make sense of what he is saying. He adores Thomas, Horrid Henry and Tom & Jerry. He will often repeat entire episodes over and over and over (and then over again!)

He is stubborn and selfish in his needs, and then sometimes he isn't (very rarely!). He tantrums and moans and then he has peaceful times and it's like he is normal.

Matt is now in a special school with small classes that caters for kids with a wide variety of disorders including those on then Autistic spectrum. He is 15 this April, his voice is dropping and he is becoming a young man... and he is mostly happy.

He is very affectionate. Loves his family, and his sister's boyfriend. Loves cats, and holidays, and ceiling fans... he has the most generous heart.

If YOU think your child is different, then the best thing you can do, for you, your family and most importantly for the child themselves, is to seek help and support. The more we understand about Matt and how his brain works, the easier things become. The more he can understand of himself the more he can self regulate.

Win/Win really.

Did you know?
  • Autism doesn't just affect children. Children with autism grow up to be adults with autism. 
  • Over 40% of children with autism have been bullied at school. 
  • Autism is a hidden disability - you can't always tell if someone has it. 
  • Autism is a lifelong developmental disability that affects how a person communicates with, and relates to, other people. It also affects how they make sense of the world around them. 
  • It is a spectrum condition, which means that, while all people with autism share certain difficulties, their condition will affect them in different ways. 
  • People with autism may also experience over- or under-sensitivity to sounds, touch, tastes, smells, light or colours. 
I could write a list with a million facts... but the biggest thing of all...

If you have met a child with autism, then you have met ONE child with their kind of autism.

Because autism is different for every person.


9 comments:

  1. My son is 8 years old...he was diagnosed when he was only 2..like you said he look like any other child we have an 11 year old girl, a 10 year old boy and my baby girl of 4years old..when I saw the difference between my two boys such as not making eye contact,wouldn't eat the same foods and the noise would make him cry among other things we decided to take him to his doctor and it came as a shock to me and my husband when they told us he was autistic..it broke my heart thinking he wouldn't be able to play with his brother and sisters..that was back then now he can communicate if he's hungry,mad and is potty trained since he was six years old..my son loves animals with long tails and speaks of becoming an animal doctor..I never thought I would hear him talk let along hear his dreams...so it's a hard road but so worth it..I love all my kids and I'm so thankful that they all understand him when the noise makes him scream covering his ears.or when he hates the color or the type of clothes he's wearing and his brother switch him...kids with autism are different yes but they're so smart and happy..my son loves hair he likes to cuddle with me as he runs his fingers through my hair it calms him down...
    Thank you for bringing this to light we need more people to understand about autism.

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    1. Matthew has an awesome older sister who helps to make his life easier. She adores him, and best of all, he adores her... :)

      Hugs you, and thank you so much for taking the time to comment... :)

      XXXXX

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  2. My son was diagnosed with Aspergers when he was in the 5th grade the first thing he asked was what's wrong with me because he knew he wasnt like other kids his age since his diagnosis hes in a private school and he's changed so much andmy older son is great with him

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    Replies
    1. Hi Sherril... Matt sometimes says things about the way he sees things different to others... I'm so pleased your son is doing well... and siblings are great... :)

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  3. If you have met a child with autism, then you have met ONE child with their kind of autism. Because autism is different for every person.

    These are the best 2 sentences describing autism that I've read yet. Thank you for sharing this, I know exactly how you guys feels my son was diagnosed when he was 6 and it was such a nightmare going from doctor to doctor trying to get help. He's currently 13 and doing very well with a great support group.

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    1. Hi Rachel. I wish I could take credit for it but I read it somewhere... :) I just amended it slightly... Good your son is doing well... HUGS XXXXXX

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  4. Great posting, RJ. Thank you for sharing this.

    I am going to show it to my son and daughter-in-law. My middle grandchild is being tested for autism. And one sentence ("If YOU think your child is different, then the best thing you can do, for you, your family and most importantly for the child themselves, is to seek help and support") is something that I need to show my daughter-in-law. She told me that she is tired of people doubting her. And reading this will certainly be a comfort to her that they are doing the right thing.

    Much love,
    Sharon

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