I have Autism, I don't feel pain, I am not dumb.

This morning I was telling Master 9 about this group, why I do it and why I want to educate and support people around me who either live with a child with ASD, those who are interested, those who work or interact with him, our friends and family. I asked him if there was anything that he would like to tell the group about him and about living with Aspergers. This is what he asked me to say:


1. I have Autism.

2. I don't feel pain.

3. I am not dumb.


I tell you, this has sparked off almost a whole day of thinking about his response and what it is he is trying to have us understand. It was an interesting response given that he could have told us anything he wanted. So after a lot of thinking, and knowing my child very well, this is what I gleaned from our conversation.


1. I have Autism.


I do confess that when we first underwent testing with Master 9 we fought the idea that our son had Aspergers. Mostly this was because we didn't know much about it and it was something so hard for us to come to terms with. But there came a time when we had no choice but to accept his diagnosis. We went through the normal stages that most go through - denial, anger, acceptance and guilt. Oh the guilt was huge (and I'm still working through it). Guilt that I had parented my child for 8 long hard years and never known what was wrong. More on that another time.


When we finally accepted his diagnosis, we went on a road to discovery. I researched everything I possibly could and it was almost like we had a new child in our house. We had to get to know him all over again and in doing so we armed ourselves, and him, with knowledge. We were very open about it and embraced everything we learnt about him. Funny enough, he accepted it without a backward glance. On our first visit to the pediatrician he said to him, 'I am mad, sad and crazy.' I can not tell you how that impacted me. I never knew he felt that way and it took every bit of effort to stop myself from crying and rocking in a corner. This is how he viewed himself, mad, bad and crazy. His pediatrician looked him in the eye and said to him, 'you are not mad. You are not bad. You are not crazy. You have Aspergers.' But that statement has stayed with me and impacted me very deeply. It may be why I am to this day a little overprotective!


From that day things changed. He changed. We changed. He accepted his 'Asparagus' diagnosis (as he called it) straight away. He found himself and we found him. We all embraced it, though we still cried many tears. We taught him to love this part of him. We taught him that he's just a normal every day kid - who happens to have Aspergers. We helped him connect his thoughts, feelings and experiences to Aspergers - educating him on why he does/thinks/feel the way he does. We taught him to be proud to be part of an amazing world. Proud to be a bit quirky, and a little different. Oh how he loves to be different!! And special. He really does think he's something special. Well both my kids do - because they are.


So when he wants you to know he has Autism. He wants you to know that he's good with it. That this is who he is. He doesn't have a problem with it - and neither should we.


2. I don't feel pain.


This was a funny one - yet it is just as it is. He has an extremely high pain threshold. Physically that is. Oh I remember him laying on the floor and banging his head repeatedly when he was just a small toddler. He spent most of his grade prep year covered in band aids for the many scrapes and bruises he took - which didn't particularly bother him. Many kids on the spectrum have a very high pain threshold. It must come from that part of the brain that is not as easily stimulated. So when he says he hurts - we take notice.


But he experiences emotional pain on a completely different level. His is super sensitive. He is profoundly affected by world events. At times he feels so deeply that he just needs to shut down because he can't communicate it or deal with it. Never under estimate an ASD child's ability to feel. Their empathy is deep but it is just expressed differently.


Their lack of pain is physical - not emotional. They are on a pendulum. So far apart are their experiences of physical and emotional pain. This experience of emotional pain is deserving of it's own blog. I'll leave this for another time too!!


3. I am not dumb.


Master 9 has often said this to us and I've often wondered why. We've never treated either of our children dumb and nor has the school. In fact, both my children are intelligent in their own right which has been recognized and worked on to the best of the educators ability. Master 9 is very typical of Aspergers and is showing signs of being intelligent on a different realm, but that's something that we will have to look at in the future.


So why does he want us to know that he isn't dumb? I asked him what he meant by 'I am not dumb' and he said this. 'Sometimes when people say something I don't know what they are saying. Sometimes they treat me as if I'm dumb. I'm not dumb, I just sometimes don't understand what they mean.'


Wow - now that is insightful. And gosh how true for our kids! The difficulty for the ASD child is in the realm of communication. Our English language is not geared towards ASD kids. We say what we don't mean and what we mean we don't say. We use idioms and hidden messages that are lost in the delivery to a child with Aspergers/Autism. Have we ever really considered how that leaves the ASD child feeling when the content is lost in translation? They are left feeling dumb.


If you are trying to get a message across to a child with ASD and it doesn't happen, change the message. We simply can not assume that this child is lacking in intellectual ability - we have to find ways of communicating which is understandable to their world. No doubt this is much harder for a child who is mid to non-verbal. But we have to keep on trying. These kids are far from 'dumb' as my 9 year old so aptly put it. They are just 'different' in how they hear your words, read your face or understand social cues. And I have learnt that there is absolutely no point in trying to get the ASD child to understand your world - they never will. To a degree a higher functioning child can be taught this - but we have to enter and understand theirs.


When we do that, we discover under the difficulties of communication lies an incredibly sharp brain that has a unique ability to think outside the box. Honestly, some of the things that have come out of my son's mouth have astounded my husband and I. It is well beyond his years and thinking ability for his age. Don't underestimate them. There is much going on in their brain that we may not be privy to until they are much older. Until then we need to encourage, stretch and open them to a lot of opportunities to explore.


So this is our message for today - from the very mouth of a child living with Aspergers.


We have Autism.

We don't feel pain.

We are not dumb.


Thanks Master 9. I heard you loud and clear.

(You can find my group at 'Diary of an Asperger Mum').

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