Do i let my thoughts go about my child's sen needs

[Grk]

Apologies about the title don't know how to word it and bit of a back story so apologies for it being long

My son who's 8 (9 in June), I've always had concerns around him. His my 2nd child
He was very delayed when a baby and there was just very particular things about him so I always thought maybe there was some sen needs and my first thoughts were autism .

So I got him referred to a community pead at the age of 2 and discharged at the age of 5 (just after the 1st COVID lockdown -y1) after numerous forms and teste and appointments there wasn't enough evidence for autism and he did get a diagnosis of global development delay we was told to watch and wait to see if any more concerns came to light, he was reaching some milestones by then but was still incredibly delayed especially with his speech and motor skills and not like other children his age. I must add nursery and school did not back me up or supported my concerns then.

Things still did concern me but I thought maybe it's me just worrying but at the end of y2 (age 7) his teacher said you need to get him referred back, things aren't right so after meetings, the senco at school refered him back but this time for ADHD as they felt this fitted his issues best.

After a long wait and tests ect he did get a diagnosis in July 2024(8yrs) however it's a bit confusing he shows traits of autism (but that they aren't the normal you'd expect), ADHD(again not normal as you'd expect) speech and development delay and developmental coordination disorder. But the only treatable aspect is ADHD so that's what the diagnosis was.
We was advised to see if medication would help and its made a huge improvement. Both at school and at home

Anyway we have an appointment in a few weeks to discuss the review of the medication with the peadiatician and Im certain his going to be discharged now back into the care of gp but I keep thinking should I ask whether I can still get him an autism diagnosis is there any point ? Or should I drop my thoughts- his got a diagnosis , his on medication which has hugely helped, his improved a lot, academically his doing really well his speech is still delayed and he does stutter a lot and repeat words over and over until he can get them out.
He doesn't behave nastily at all . He is the sweetest little boy very kind hearted but he is quite a lonely child and still does have some unusual behaviour

I just don't know what to do

Push for an autism assessment while you’re under consultant care, it will be a longer process once you’re out of the system. Essential before moving into secondary where things often fall apart big time.

What autistic traits and behaviours do you see?

Your son's condition based on your description sounds more syndromic than simply autism, and I'm not sure pushing for an autism assessment will give you the full story. I'd be discussing genetic testing with your Paed rather than just an autism assessment, I suspect there are more detailed answers to be found in that direction.....

What difference do you think an autism diagnosis would make?

I’d focus on the fact that the medication has helped him academically and look at further support for his speech.

If he has or had, a global delay, do you think that is still the case, given the improvement since medication?

If you feel that he needs more support, you could apply for an EHCNA.

It is extremely common for there to be overlap in these conditions, but as you said, he was identified at 8yo as having various traits.
It's great that you feel the ADHD medication has helped; what do you think he / you still need supporting with? Providing school are meeting his needs (which they ought to be doing regardless of diagnosis), to be honest, you are not going to get much more help from the NHS if, for example, he was diagnosed with ASD. I'm not sure further diagnoses will make much meaningful difference to your lives.

Perhaps it is worth seeing if you can be referred to a speech and language therapist (SaLT) for the speech delay, and an occupational therapist (OT) for developmental coordination disorder? Or pay for these things privately, if you can afford to?

The key thing at this stage is identifying how to best support him to access his education, and if these things are put in place now, it is much easier for them to be transferred at secondary to ensure he is still being supported as he needs.

He doesn't need another label, but he does need speech and language therapy.

Spins around /walks around in circles. Doesn't give eve contact.
Doesn't always respond to his name or questions
Noise sensitive but not all the time .
Very particular with food won't attempt any fruit or veg
emotional when doesn't win or things go the way he wants

There's lots of things speech related but they come under the speech delay

I think it’s worth pushing for an assessment, if it’s not, that solves a mystery, but if it is autism, it would help massively going forward to know that.

He has had speech and language in the past he had it for 5 years but we basically got told there's no more they can do for him as his had so much of it . So unfortunately he doesn't get that now . I've tried to refer him back a few times but they don't want to know and just give advice on the phone not actually see him in person on a regular occasion

I'm certain his had genetic testing the 1st time and nothing was found

That sounds hard @Grk !

Do you have the report from when he was diagnosed with Global Developmental Delay? Did the paediatric team talk you through what that meant about his likely abilities and developmental trajectory as he got older?

Children with Global Developmental Delay are likely to have ongoing difficulties compared with their peers in all areas - so motor skills, speech and communication, attention and executive functioning, verbal and non-verbal reasoning, problem solving abilities, social skills etc. Now that your son is older, you could also ask for a more in-depth assessment of his cognitive abilities, to help set expectations with school about his abilities and areas he may find challenging.

I'm not sure that chasing an autism diagnosis is going to get your DS the help he needs - his difficulties may be best explained by his developmental delay and ADHD. But that doesn't mean that strategies for supporting a child with autism can't also be helpful for your child. Does the paediatric team your child sees have any Occupational Therapy services, or did they offer any support to you and his school following around adaptations to help him cope following his ADHD diagnosis?

@SayDoWhatNow thanks for your response no we haven't got any report about the delayment it's literally just mentioned on the letter although I do remember that when he started school at reception it was changed to learning difficulties
The peadiatician we had that time was awful she said to us 1st time she met him his not autistic he said hello to me . I never agreed with her
Thankfully we don't have that pead now

I think his main issues are his speech and listening and attention and listening
He doesn't have an ehcp . We've had so many conversations with school but they don't seem to even want to support it .we are starting this our self's

I really think he needs more speech therapy

I actually think it is worth pushing for an autism assessment, even with the ADHD diagnosis. From what you’ve said, he does show distinct signs.
If he gets a diagnosis, it will help school plan their strategies for supporting him, and also allow them to ask the LA for certain types of support, eg input from the local autism teaching team.

It will also open up the services outside school that are available to him. My DD has Down’s syndrome but she also has autism and ADHD diagnoses. Because of the autism dx, she is able to attend holiday clubs for autistic kids and receive other support only offered to kids with ASD.

As it was early in the diagnostic process, he was likely just tested for the common genetic issues. As he's got somewhat of a constellation of symptoms, personally I think it would be well worth discussing more detailed testing with the paed this time. While many genetic syndromes can cause autism-like behaviour, they are not autism and may benefit from different treatment methods.

It doesn’t necessarily sound like GDD given that he has caught up with some areas by the sounds of it. ADHD sounds perfectly plausible and it is another neurodevelopmental condition after all. What difference would an ASD diagnosis make? Speech and language wise what do you do at home to help him?