Strange SALT Conversation leading to autism assessment

[Justmadeoneup]

Hi hoping I've put this in the right section. My ds will be 3 in a few months. At his 15 month check the health visitor raised concerns about his, speech, fine motor skills and problem solving. She implied he might be autistic. He was 6 weeks premature so I wasn't expecting him to be able to use a coat hanger as a tool to hook an out of reach object or to put buttons into a coke bottle. Nevertheless I was shocked and really upset for a couple of weeks. He caught up on fine motor and problem solving over the following year but at the 2 year check she said he had a severe speech delay as he only had around 5 words. I had already been seeing private slt for this so wasn't surprised. He also wasn't really pointing so another potential indicator for autism. He started nhs salt and finished that fairly recently. He now has well in excess of 100 words and points all the time. He doesn't use sentences yet. Anyway, the slt told me today she was referring him for an autism assessment if I conset as he apparently has a lot of indicators. She then went on to list them and I felt I disagreed with most of them. I don't think I'm a mum in denial as I have health anxiety for the kids and always think every little thing must be the worst case scenario. But at the same time maybe I am and I can't see it. She said he has sensory differences as he is obsessed with staring out the window. He isn't, he looked out his bedroom window once for a few minutes when she was doing a home visit. I was with him pointing things out. He occasionally looks out at his swing set and points and says garden as he wants to go out. She said he is hyper fixated on letters and numbers. He isn't. I got his magnetic letters and numbers board out when she was here to do an activity which he really enjoyed. He also went through a phase of trying to count to ten and recite the alphabet. Now that he's mastered that he doesn't bother that much u less I prompt him. Again this wasn't all the time. He isn't particularly obsessed with any toy etc, he plays with them all but usually has a temporary favourite which gets slightly more attention e.g ten mins of play. She said about his challenging behaviour. He is such a calm laid back boy. I've never once told her he has challenging behaviour nor had she witnessed any. She said at his first clinic visit at the start of the year he didn't oay attention to myself or the slt he was just exploring the office and looking at the tots without trying to engage us. That did happen but he hadn't long turned two and was in a new environment with a load of new toys. She said he o ky smiles at the toys. Definitely not true, he smiles at me and other people all the time. He wants to play witb us and parrallell plays with others. She said it has to be by his rules though. I thought that was fairly normal for 2 years old. He doesn't always answer to his name, maybe 50% of the time and that is true. So you can get the jist of the conversation. I have agreed to an autism assessment anyway and if he does turn out to have it I would prefer he was diagnosed before starting shool in case he needs extra support etc. I was just really taken aback by her reasoning and the conclusions she had jumped to. We were really worried about autism after his 15 month check but had started to sway to him not having it. His health visitor was always 50 50 about it but said a few months ago she doesn't think so. At that point she also did an autism screening for him. She said if you score over 80(I think that was the number) then she would refer him. My ds scored 10. Not really sure what I'm even asking here . It was such a bizarre and unexpected conversation. I'm glad they are going to assess him if they have genuine concerns and he will apparently be seen in a matter of months. I just don't necessarily agree that he does have indicators which meet the autism criteria bar his speech delay. Has anyone else been in a similar situation if so how did it turn out, did you progress the assessment or just wait and see? Sorry this turned out to be so long winded hats off to you if you made it to the end.

Totally appreciate this perspective. However, the neurodevelopmental team are saying that he doesnt need any additional support other than speech and language. The nursery also agree he doesn't need anything additonal. They report the same as we do, he has friends, plays imaginatively, doesnt have any repetitive or rigid behaviours, no sensory issues, follows instructions, likes a range of gsmes and toys, good self help skills etc. I would take any support recommended that would benefit him but nobody thinks he needs any...

I’ve just been thinking about this some more. I wonder what the likelihood is that a second NHS assessment will come to a different conclusion to the first. I mean it would really open them up to all sorts wouldn’t it, by saying the first one was actually wrong! Would they be willing to do that?

On the other hand, I’m not sure they could make your DS’s current presentation fit the diagnostic criteria, they’d really be having to stretch it from what you’re saying he’s like now.

Hmm! I wouldn’t like to be on that diagnostic team, they’re in quite a pickle!

I’m still shocked my child is autistic. I went along with assessments recommended and they had autism and adhd. As they’ve aged it’s become more pronounced, but I never would have said anything when they were probably under 6. But others spotted it.

I honestly dont know what will happen. If the assessment is sound, accurate, done in a timely fashion and mapped to the diagnostic criteria then ill accept it either way. This is why I asked to wait a year so as 3 year old behaviour cant be misconstrued as anything else. We also have a differential diagnosis now, the speech disorder, that will need to be taken into account, and not palmed off as an autisitc trait.

At the moment my focus is on his speech therapy as thats what he needs right now. He wont be going to school for another 2 years (scotland) so we can consider any additional support that might crop up down the line.

What is your child like now? Its really difficult to diagnose younger children from what I understand. So many behaviours are common in both toddlers and autistic people. The paediatrician involved in my sons ados felt it was inconclusive when she spoke to us the first time. The health visitor also advised that they dont assess for adhd before 5, not sure how accurste that is though it was part of a wider discussion we were having.

I'm a SLT.
It sounds like the initial assessment was crap, and there is the potential that the paediatrician was influenced by incorrect framing and background info from the SLT. I'd be wary of professionals who rely too heavily on ADOS - it is just a tool.
Obviously I have no way of knowing if your son is autistic or not, but the most important thing is pursuing individualised support for the issues affecting him - as you are doing.
As an aside, the nurse who told you SLTs don't have training on neurodivergence was talking shite - I wonder what on earth she thinks we do? It doesn't mean there are no bad SLTs, or no bad assessments. But she's barking up the wrong tree if she thinks this is missing from our basic training.

Thats pretty much what we think. He's getting another one next year so hoping it will be better, regardless of diagnosis.

Im only repeating what she said. She doesnt seem keen on the entire salt department in our area, states they constantly pass the buck and try to get health visiting to pick things up. So im guessing she is influenced by that. Certainly my experience with our local team has not been good, hence why we now pay privately . Ironically many of the private slts in the practice also do part time on the nhs. Its probably luck of the draw.

Personally I think it is quite obvious for many of the autistic boys I know at 3 or 4 that they are autistic. My boy is 4 and it is obvious hence the diagnosis just recently.

As mum of two with autism I'd say the SLT is right to refer for an autism assessment. I'd be concerned at single words only at 3, interest in letters and numbers at 3 and only responding to his name half the time. Son was very similar at 3 although I had learned he could read before he was three when he spelled words with his magnetic letters.
Referral is a good thing early identification should bring support. You could ask HV for a referral to Portage and the Early Years teaching service at the Local Authority if they have one. Ask about a referral to Occupational Therapy and get his sight and hearing checked as well. Hope the referral gets a swift appointment for you.

Thanks. Unfortunately we dont have portage. His eyes are fine. Waiting on a hearing test as private salt want to rule it out. Not sure what OT would be for? No professional involved thinks he needs support out with speech. To clarify he had only just turned two when he had single words, he had well over 100 words at 2.5 and had started putting two words together. By his 3rd birthday he was using sentences albeit hard for outsiders to understand because as we know now he has a phonological speech disorder. He doesnt have a special interest in letters or numbers. During a slt visit iver a year ago I brought out a new magnetic board with letters and numbers. She wanted to observe him play. He was excited because it was new. Earlier that year we had taught him how to count to ten and he liked doing it for a few weeks. Im not talking daily either. He liked the alphabet song when he was younger. He is 3 yrs 10 months now, he cant read and has no interest in letters or numbers. The 2nd assessment won't be happening until next summer at my request.

Yeah i think for some kids it is really obvious, especially if they have classic autistic traits such as stimming, sensory issues, rigid/ repetitive behaviour, social issues etc.

It would be a really good idea if posters RTFT, or at least all of the OP’s posts, before commenting!

As a parent of a now 18 year old DD who I suspected had autism from the age of 2 but had to fight to get a diagnosis (finally went private and she got it age 16), if I was offered an assessment while still so young I would take it with both hands. If he doesn’t have it, then great but if he does at least you’re in the path to getting all the help and support in place he may benefit from once at school. My poor DD struggled through primary and had a miserable time at secondary. Academically she did well but socially she really struggled. Moving to a new sixth form, with her formal diagnosis in place meant she had all the support and accommodations she needed to thrive and it makes me sad to think how different her earlier school years could have been if the professionals had listened to me and picked it up. I know things have come a long way I. 15 years in the diagnosis of autism in girls but just because she wasn’t a hand flapper, didn’t obsess about trains and had an extremely mature vocabulary, they said there was no way she was autistic. Turn the clock forward a decade and there was no denying it. Take the assessment as you might well be fighting for one in a few years if you don’t.

He has had the assessment and is getting a 2nd one next year at our request. I appreciate that for lots of families they know their child is autisitic or neurodivergent in some way and really have to fight for an assessment/diagnosis, which is really difficult especially for the child. However, thats not really like our situation. I also dont think you need to be hand flapping or have an intense interest in something to be autisitc. Im glad your daughter has a disgnosis now though and things are somewhat easier for her with this.