Monday, 2 April 2012

April is Autism Awareness Month

I'm joining in a Light it up Blue for Autism linky to increase Awareness of Autism Spectrum Disorders (ASDs).

I wasn't sure what to write for this and I needed Boy Child's consent to actually press publish if I was going to be talking about him. His concern is not really about what I say about him and ASD stuff more that with the release of the DSM-V that Aspergers Syndrome will no longer be recognised. It is his label and he doesn't want that to change.

So here's a few facts for you. A 2008 study released by the American CDC has shown that 1 in 88 children have an ASD. Children diagnosed with Aspergers are generally diagnosed a lot later at the age of 6 years and 3 months. That fact totally blew me away when I read it as Boy Child was diagnosed 3 days shy of that age.

Here are a few things I have learnt or realised along the way. My experience may be very different from yours as my child is different from yours or those you know.

Professionals listening to your concerns may respond with "all children do that". While it is a gross generalisation, they are right. However, it's the intensity, the extremes of these behaviours that can tip it over from 'typical' childhood behaviour.

These are some examples of things that crossed over from 'typical' child behaviour into things that concerned us.

  1. Boy Child hated his hair being touched. So much so that haircuts were extremely difficult and he was banned from a hairdressing salon at age 3 because he kicked a hairdresser in the stomach.
  2. Whenever we had to do a check for nits (head lice) he screamed so loudly and so much we had to warn the neighbours in case they thought we were hurting him. When he did have nits in Kindergarden, he was so distressed during their removal that he dug his fingernails into my arm. Thankfully the scars he left have now faded.
  3. He basically lived on nuggets, chips and nutella or Vegemite sandwiches for many years. He would often vomit at the sight or smell of food he considered 'gross'. His Kindy teacher convinced him to try a grape and he spat it back into her hand. My mother made him try mashed potatoes and he vomited. He couldn't eat at the same table as people with 'gross' food.
  4. His imaginative games involved all participants following his script. There was no leeway. The games had to run exactly as he imagined them.

We were lucky. It only took about 6 months to get a diagnosis for him. We told him about his Aspergers and how it meant that he thought differently to most people. Boy Child was happy because "now they can help me."

Schools seem to have improved their understanding of ASDs. Boy Child did fairly well at primary school. Although he often tried to teach the class, he was never really disruptive so he was never given any aide time. In hindsight, I wonder if I should have fought more on that point. I managed to get him an Individualised Learning Plan (ILP) for Years 2 to 4. But his Year 1 and 5 teachers were not at all receptive to the idea. I'm really glad that schools have a much greater awareness of ASDs now than they did.

Boy Child is now 13 and in Year 8 (the second year of High School here). A number of people have said in the last 6 months how his Aspergers is not really noticeable or that he must be considered mild. Those comments have come from people who haven't spent much time with him, so while I take them with a grain of sal I see them as a positive. It shows how far that Boy Child has come.

ASDs can't be cured. But I want to know that we have equipped Boy Child to deal with real life without stunting his awesomeness as he puts it. For Autism Awareness month I want people to know every person on the Autism Spectrum is different. This is our story. What works for my child may not work for yours or your friends or your neighbours etc.

What's your story? Can you help increase the awareness of Autism during April?



Madmother said...

Please link on mine too.

Must admit am feeling pretty alone right now.

jaak said...

Hi E this is Jen - jemikaan and this is my new profile/ space. It is wonderful to hear that boy child's doing well ATM xo

jaak said...

You're never alone xo

E. said...

MM - as J said, you are not alone, honest.
J - Glad you are back. This year is so much better for Boy than last year.

Rhonda - Silly Mummy said...

My son only wants dryish food, stuff he can hold. Nuggets, chips, bread, macaroni... It's hard, it's lonely. Especially in my case I can't meet with other parents during work hours. All meet ups happen while I'm slaving.

Renee | About a Bugg said...

Thanks so much for sharing this and thanks to Boy Child for allowing you to.

We shared a similar path to you, only a few months to get a diagnosis and the food issues, rigid play and hair issues are all scarily familiar. We can also add in a few of our own - as I am sure this is only the tip of the iceberg for you.

I hadn't seen that statistic about the average age of diagnosis - but it makes me question the Facshia cut off age of 6 even more....

Thank you again xx

Suzi said...

It's wonderful that Boy child has come so far, I think that is what we hope for our ASD kids, that oneday an outsider looking in could not tell that there had been so many struggles. Thank you for creating awareness and sharing your story. X

Leanne said...

Thanks for posting E. There are many of us who are not on the journey but who recognise those who are and need to understand a little more so we can support you in our own small way. L

E. said...

Rhonda - We had dry brown food only for a very long time. But he did drink a lot of milk too. The group here has a evening meeting apparently. I'm a bit wary of group things so I only went to a few back in the beginning. It can be lonely but I've found other bloggers can be really helpful and supportive. Email me if you like.

Renee - Thanks for the comment and the linky yesterday. I'm guessing the funding had to cut off somewhere and because Aspies can talk etc may be they slip through the cracks for longer?

Hey Suzi - I found one of HS social stories from 2006 the other day. I'd forgotten that he needed some of them. I cried. He has come a long way.

Leanne - Understanding and support are great. Thank you.

tracey said...

We have a 2yo daughter with Autism (and if I'm honest, I need to have my 4yo son assessed asap too..). It's a challenge & it sucks, but I'm grateful for the blogging community out there because it's spreading awareness every single day, not just April 2 :)

I made a video if you want to check it out on my blog x


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