Overwhelmed 6YO

[SEND2022]

6YO DS was 'diagnosed' at 2Yr11m with global delay. He remains under SALT but hasn't been seen since by paediatrics.

He has an EHCP. He is not toilet trained. He was recently seen by Physiotherapy NHS and I self funded a sensory OT.

I'm completely overwhelmed. We think there is either ASD and/or ADHD. Bladder and bowel service are supplying his products but won't actively support until we make progress on his communication. He won't communicate his needs, he has the words he just won't. I'm not convinced he can feel when he goes to the toilet and there is not a medical issue of some form. Have been to the GP several times who state "well he isn't communicating pain and he appears fit and healthy" so that is that.

I've booked him a private appointment with a local all round service (£500!). On the paperwork they want to know what I aim to get out of the appointment. I don't know.

I mean, there's no point asking for a diagnosis because he has had so many different assessments that a diagnosis won't tell me anything new. But I don't understand why there is an issue with his communication. I feel like I've booked it but don't really have any idea what I actually want from it except for a magic wand to be waved.

If DS has an EHCP you don’t need to fund self OT yourself, it can be included it the EHCP. Have you spoken to the sensory OT about toilet training and introception?

He won't communicate his needs, he has the words he just won't.

Won’t or can’t? Communication is about far more than having the words. There are many reasons someone may have the words to communicate but in practice be unable to communicate. For example, selective mutism. Does DS have SALT provision? What have they said?

The GP needs pointing in the direction of autism and LD training. It is well known pain signals aren’t experienced the same or externalised the same. Have you ruled out constipation? If the local continence service can’t help because of DS’s communication needs you can push for an out of area referral.

If DS needs ongoing physio this can also be included in the EHCP - often giving more support than DC would otherwise receive.

I would seek an appointment with a different GP at your practice and ask for a paediatrician’s referral to the hospital. This is beyond toileting issues. It’s not the only thing you have concerns about. My youngest is autistic (7) and still doubly incontinent. Him withholding bowel movements was actually the first sign of any issues, at the age of 12 months. We’re told holding in to it is a sensory stimuli? And also as you’ve mentioned sometimes the signals aren’t the same so they may not even be aware of a full bladder or the bladder even holding urine for example. My son never has a dry nappy, ever and shows very little sign or interest in toilet training.

I have a friend who’s son was also given a global delay diagnosis at a young age and she had to push and push and eventually at the age of 8 he got a diagnosis of ASD and ADHD. She knew it all along but they kept fobbing her off. It means he now gets the support and accommodations necessary. She moved him to a different primary school also, where they’ve been far more supportive.