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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? 

  • 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.

  • he might of suddenly had a realization of how deep the pool was and when he took the shorts of they might of suddenly felt heavy or full of water,  what ever it was he probably couldnt explain the feeling properly. also you could try children's ear defenders if the babys crying is too loud, it might take some time for him to get used to wearing them, it took my son months

  • 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.

  • Hi , I am sorry to hear that you're going through a challenging time. In terms of your son's behaviour, individuals on the spectrum can often display behaviour that may be challenging. There will generally be a reason for this and it is important to try and understand the trigger for the behaviour when developing strategies. You may like to have a look at the following link for more information on behaviour and strategies: 

    https://www.autism.org.uk/advice-and-guidance/topics/behaviour 

    You might also like to take a look at The Challenging Behaviour Foundation website for further information and advice: https://www.challengingbehaviour.org.uk.  They also have an information and support service which you can contact by phone or email – details can be found here: https://www.challengingbehaviour.org.uk/for-family-carers/family-support-service/ 

    You are right that we do offer a Parent to Parent helpline, but at the moment our the service is temporarily closed due to a high volume of calls. Please check the information in the link above to find out more. Once the service reopens it will be announced on that page. 

    You can find further information about the service here: https://www.autism.org.uk/what-we-do/help-and-support/parent-to-parent. There are some links at the bottom of this link signposting to other services that you may find useful.

    I hope this helps.

    Best wishes,

    Anna Mod