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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

  • He may be ADHD as well as experiencing sensory overload- taking in too much stimuli & far more than his little mind can process. 

    my guess with the pool is there is a lot there- the acoustics, the smells, the water, the survival skills, the new kinetic forms, the social ambience and ambivalence, the structures of authority, the clothing… it’s a lot to calculate and calculate well if it’s hitting you all at once. He sorted out the safety of one ladder so it makes perfect sense to stick with this. It’s proven trustworthy. It’s stable. And in a potentially dangerous environment, we stick with proven pathways, trusted systems. 

    I might suggest looking at the sensory environment at home. There are many unnatural, non-human-friendly items in houses now. Humans went blazingly into the late 1900s and got creative! LEDs turn on and off at a high speed, they don’t mimic the sun like filament energy saving halogen. And if his little brain has the capacity to take in his entire surroundings really fast, he could be worn down just by sensing those. Appliances make high pitched noises, petroleum based fibres don’t allow the skin to breathe properly, household building materials can off-gas and make kids stressed, scented cleaning products can be damaging… the list goes on. And while NeuroTypical kids learn to intuitively block these things or dull their senses, even though we actually need them to calculate the world around us, autistic and ADHD kids can be in taking far more than their peers, an overload which can hinder learning, can be so much it’s difficult to hear or think straight. 

    Assume everything is a response to elements beyond his control. Help him learn how to evaluate things for safety. Perhaps he needs a working order in any new space in order to participate. Like spending time in a space when no one is there to examine the space itself. Then meet the instructor one on one a few times before attending. And maybe getting advance information (spending time with you in the pool first, watching a YouTube video before arriving - always aware of what’s next) so he’s not “thrown in the deep end” and isn’t sorting out all the other sensory information. Knowing what’s next or what the plan is is one of the most helpful things you can do for us.

Reply

  • He may be ADHD as well as experiencing sensory overload- taking in too much stimuli & far more than his little mind can process. 

    my guess with the pool is there is a lot there- the acoustics, the smells, the water, the survival skills, the new kinetic forms, the social ambience and ambivalence, the structures of authority, the clothing… it’s a lot to calculate and calculate well if it’s hitting you all at once. He sorted out the safety of one ladder so it makes perfect sense to stick with this. It’s proven trustworthy. It’s stable. And in a potentially dangerous environment, we stick with proven pathways, trusted systems. 

    I might suggest looking at the sensory environment at home. There are many unnatural, non-human-friendly items in houses now. Humans went blazingly into the late 1900s and got creative! LEDs turn on and off at a high speed, they don’t mimic the sun like filament energy saving halogen. And if his little brain has the capacity to take in his entire surroundings really fast, he could be worn down just by sensing those. Appliances make high pitched noises, petroleum based fibres don’t allow the skin to breathe properly, household building materials can off-gas and make kids stressed, scented cleaning products can be damaging… the list goes on. And while NeuroTypical kids learn to intuitively block these things or dull their senses, even though we actually need them to calculate the world around us, autistic and ADHD kids can be in taking far more than their peers, an overload which can hinder learning, can be so much it’s difficult to hear or think straight. 

    Assume everything is a response to elements beyond his control. Help him learn how to evaluate things for safety. Perhaps he needs a working order in any new space in order to participate. Like spending time in a space when no one is there to examine the space itself. Then meet the instructor one on one a few times before attending. And maybe getting advance information (spending time with you in the pool first, watching a YouTube video before arriving - always aware of what’s next) so he’s not “thrown in the deep end” and isn’t sorting out all the other sensory information. Knowing what’s next or what the plan is is one of the most helpful things you can do for us.

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