A Glimpse into our Autism: Not bad enough...

Dear friend,

Yesterday I sat at the dining room table with my head in my hands. Our son needs help, he is struggling. But where do we go for help now because he is not 'bad enough' to receive specialist support any more...

He didn't come out of school with the others so I waited. After 10 minutes I went looking for him. Maybe it was his turn to clean the class, maybe he was looking for his bag/coat, maybe he wasn't feeling well... I found him, with his teacher and he was extremely distressed. It had not been a good afternoon week. But he's not bad enough for specialist support...

Two hands holding jigsaw pieces together

At home his stimming has started again. Several jumpers have frayed collars or sleeves from his chewing. He is pacing around the table whilst talking to me and repeating himself a lot. We can not find out what is wrong. But he's not bad enough...

Butterfly with coloured jigsaw pieces pattern with textHe is exhausted yet he can't fall asleep. His face appears at the door every evening. Did I have my pills? Why can't I sleep? More tears before bedtime. He is struggling. But he's not bad enough...

He is shutting down, not communicating, retreating into his computer game world. I feel like I'm losing him. But he's not bad enough...

We are on a collision course. His anxiety has now reached danger level and we tip-toe around him until one of us finally blows. But he's not bad enough...


Rebecca Burgess: Explaining autism as a spectrum

Every autistic child is entitled to the support they need but there isn't enough help available! How do you decide who is most in need? You can not grade autism on a linear scale (see Rebecca's brilliant explanation.) But he's not bad enough...

Why do we have to fight for the right kind of support for our son? Surely every autistic child is entitled to the help they need! Why should my son receive second class care? Without the specialist support he is struggling, we are struggling. But he's not bad enough...

If we are going to expect 'high functioning' autistic people to integrate in mainstream life we must ensure they are given the right support to do this so they can succeed or we are simply setting them up for failure.

Yesterday I sat at the dining room table with my head in my hands. Our son needs help, he is struggling. But where do we go for help now because he is not 'bad enough' to receive specialist support any more...



This week we have heard that NHS commissioners in south-west London are considering proposals to reduce the number of children being diagnosed with autism. I am very concerned that this is going to put increased pressure on already strained families. What will happen to the children who simply are not bad enough? Please increase support don't withdraw it!



A glimpse into autism is a series of short letters that explore how autism effects us on a day to day basis. Disclaimer:  this is our experience not all autistic people are the same.





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