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Undiagnosed son - help please

Altraure

Hi, my son is 6 yo. We have been on the waitlist for his diagnosis for 2 years now and still waiting. He has an EHC plan put in place at school. 

We are struggling to understand his behaviours and offer him help, as we've never had any experience with autism before. At school we are told he is disruptive making odd noises, can't focus and cannot finish most of his jobs. He needs constant supervision to finish a task and if not prompted by a teacher, he would just wonder around aimlessly. 

We tried some after school clubs to maybe help with his focus and let out some of his energy (he cannot sit still and is constantly rocking back and forth or jumping up and down). When attending kickboxing for children, after a few sessions he were kindly asked not to bring him anymore.

He is now attending swimming lessons at a second setting (the first setting was putting him on time-out for 15min/out of a 20min swimming session for disruptive behaviour). He sometimes listens to what the teachers are saying, but had two recent episodes that cannot really be explained:

1) he suddenly decided that the pool is deep and didn't even want to go in - he was going in normally before without issues. Now we got him to use the ladder, but it must be the same ladder every time and this cannot change.

2) Today he was swimming normally and listening to some things the teacher asked of him, suddenly he took of his swimming bottoms in the middle of the pool and when trying to come out to put them back on scrapped his knee and went into hysterics saying he will not go in again. 

When asked why he took them off - he could not explain. I asked what he was thinking about at that time, without any anger, calmly, he could not respond at all. 

At home he is crying triggered by various little things, even when his brother is crying, it's too loud for him and he starts crying too. 

We find it frustrating and we're really worried about him, and we can't find any form of further help for him. Private settings offering therapy are out of scope financially. 

I was told by someone that the National Autistic Society helped them loads and hoped that there would be some kind of helpline that could help direct us to some help, but couldn't find anything like that. There are no branches near us (Basingstoke) and both me and my husband are lost with what to do next, where to search for help? 

Please is there a chance you can give me some guidance where I can reach out? 

Parents

  • Hi. You have explained this fantastically. When we thought our child was autistic he was 2. He is now 5, nearly 6. We tried doctors and they looked at us with a blank expression. So we went straight to the children's department of the hospital and spoke with a children's paediatrician. From there we had his hearing and eyesight checked and other tests. Finally just watching him the paediatrician was in agreement that he was infact autistic. We went back several times afterwards and she asked to just watch how he did things. Gave him 10 cars and he lined them up. Rocking, stimulating and other things. He was in a 2 year provision before school and they helped massively. Before he was going to attend normal nursery the head of school asked if we would like to keep him in the 2 year provision. As they were keen to get him a place in the school for disabled children. He's non verbal and won't toilet train but he's thriving. My advice is a paediatrician at the hospital to get the ball rolling.

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  • Hi. You have explained this fantastically. When we thought our child was autistic he was 2. He is now 5, nearly 6. We tried doctors and they looked at us with a blank expression. So we went straight to the children's department of the hospital and spoke with a children's paediatrician. From there we had his hearing and eyesight checked and other tests. Finally just watching him the paediatrician was in agreement that he was infact autistic. We went back several times afterwards and she asked to just watch how he did things. Gave him 10 cars and he lined them up. Rocking, stimulating and other things. He was in a 2 year provision before school and they helped massively. Before he was going to attend normal nursery the head of school asked if we would like to keep him in the 2 year provision. As they were keen to get him a place in the school for disabled children. He's non verbal and won't toilet train but he's thriving. My advice is a paediatrician at the hospital to get the ball rolling.

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