Thursday, September 12, 2013

A lack of education

I don't mean that my children or I haven't had enough education. I mean the lack of education for teachers, head masters/mistresses, for the schools staff overall. There is even the same lack of education for others that work around children. Let me tell you why I think this is the case.

My children go to very understanding, sympathetic schools. They are great with my youngest child, who is diagnosed with autism. They stick to the plans put in place, they show great understanding of my son, as they see him. 

That's where the problem arises.

My friend called in this morning, she has concerns about her child. She is going through the same thing I am going through with RJ. So instead of sharing her story, it's hers to tell. I will tell you about my experiences. I will also tell you about what I have learnt and what I am still learning.

I went to the school about my concerns about RJ, a few years ago. I also went to the Dr. I also turned to anyone that would listen, to explain my concerns. What responses did I get?

The school listened, but disagreed. I would like to add, as a side note, the teacher that I turned to, ended up being little A's reception teacher. She has been utterly excellent with him, and has taken every bit of reading material I could find home, and read it all.

The Dr basically told me that I had managed this long, why label him now? Another Dr did listen to what I was saying, and agreed to refer............after she had a letter from the school, who disagreed with my opinion.

The 'Professional' that I turned to. Oh well she topped the lot. She made me utterly break down and cry, then........sent me for Parenting Skills classes!?!? I don't scream and shout at my kids, it doesn't work. I don't smack them, I simply don't think it's an option. I talk to my boys, then we work on things. I needed a break, this woman made me feel useless.

But I am not the type of parent to rush to the Dr with every sniffle or raised temp. I don't panic or overreact. 

I do read though
I do watch
I do listen.

I have done a lot of this since little A was diagnosed. I have gone to 2 lots of Early Bird Classes. I turn to the NAS Website if something is puzzling me. I talk to other parents of Autistic children and adults with autism. There are some things that I have learnt that are not taught to the people listed above. New words, that explain our children so much better than a pamphlet.

Words like Stimming. My sons stims  verbally and physically. When he is excited or anxious he runs back and forth, or rocks himself, or flaps his hands. This is not a choice he makes, it is who he is! He couldn't  change it anymore than he could change the colour of his eyes. He also uses it to educate himself, he will walk back and forth, talking. He explaining things to himself, repeatedly, in a way that he can understand.

A new word I have heard, which explains a lot is Masking. It is something that some high functioning autistic people use. They understand that they are 'different', they realise there is a big lack of understanding. So they 'mask' their behaviours from others. School is a very structured, routine led environment. Very easy for someone like RJ, who prefers routine, to fit in. When he comes home, however, he needs a release. He has to shed his 'mask'. His behaviour can be quite challenging at home, but as long as he is doing well in school, I can live with that.

A big thing for a lot of people with autism is 'Sensory Issues'. This isn't just too loud or too quiet. There are actually too many to list here. Some autistic children can hear every little noise. For example, they may not be able to answer your question properly, because all they can hear is the whirring of the fan in the corner. It's taking over everything in their head. 

Can you imagine what a classroom is like for a children with sensory issues? It must be so hard to single out the things they actually NEED to know.

Why are people that are involved in our children's lives, and education, not taught about these things? I have 2 sons in school, both of them are fine while they are there. I am sure that the teachers they encounter, throughout their day, must think I'm crazy! 

They probably think that I am overreacting to something, but they don't know everything. They only see a very small part of my children. 

I would love to see the lack of education about autism changed. Hopefully one person reading this will change the way they see a child with 'different' needs.

I never ask people to share what I write, but I am this time. Please spread the word, change peoples opinions..........


  1. That's a really helpful description of your experience of autism. I have so many friends who have children on the autistic spectrum, my mum has worked with children with austism in schools, and I have never felt I understood enough of what they experienced. I feel I do a little bit more now after reading this. Thank you.

    1. Thank you for reading. I think its important that people understand these 'unseen' disabilities. I will spend the rest of my life, fighting for understanding of Artist x

  2. so so true. We were utterly shocked at how the profession that should be most caring towards our children i.e. teachers / schools, ended up having the least understanding and knowledge (we give a tiny glimpse in our 'this is my child' post

    Thankfully the doctors did understand and they reassured us that it wasn't our parenting but it was a medical condition that was the cause- As well as ASD, sensory issues REALLY affect J a lot and I think even those with ASD training don't always know about or understand sensory issues. xxx

  3. I think what you have written is so true, there does need to be far more awareness and people like you writing about this are doing their bit to help and make people think and challenge them. Thanks, Michelle

  4. A fantastic post Jo and written so well too! I'm happy to help you spread the word. I've tweeted your link. It is sad that there is such a lack of education out there. I volunteer regularly at my sons school and am often put with kids with ADHD and/or autism the trouble is I have no training at all and often I don't know whether I am helping them or triggering a meltdown through my reactions to their behavior. I am out of my depth most of the time, some training would make all the difference.

  5. So a clearly written and useful post. I can see this happening to other families around me with children who have autism. Even psychologists miss what's under their nose. I will share.

  6. I work for a small charity which helps families and children with autism and ADHD. It's true to say I speak to so many families whose children just about cope at school but then need to release at home - so unless the parents are listened to, no-one really understands what the problems are. It's tough for them. x

  7. Sensory issues especially are so incredibly hard to explain. Even my partner, who's known me for years and years, and who's the most understanding person I could possibly wish for, didn't really understand how much sounds affect me. It was only when we were walking through a tunnel at the railway station and there was some drilling overhead. Now, everyone would agree that's pretty loud and annoying. But he said he didn't pay much thought to it until he saw me walking hunched over, my shoulders up to my ears, trying to get away as fast as possible. It's not just distracting, it's physically painful. Not because I have superhearing or anything like that, I simply can't block or filter out noises the way most people can.

    It's taken me years to realise that not everyone struggles with this. I always thought everyone had the same sensory problems, they were just better at coping with it. Because that's what you assume when there's a loud noise and nobody else jumps three feet into the air. You simply don't stop to think that maybe they didn't hear it as loudly. You just assume you're the only one overreacting.

    So I agree, it would help a lot if health care professionals and teachers were aware of this. But it is an uphill battle to explain it in a way that makes sense.


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