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.

If a relevant professional suspected you had a condition and wanted to test you for it would you say no thank you?
You know your child better but these professionals know signs of asd better, why would you ignore them?
If he had the assessment he will be assessed by a ed psych plus other relevant professionals if they are wrong they are wrong but what if they are right?

let him go on the list. It’s generally an extremely long wait for assessment by which time he will be at school you will have had more time to watch his development and input from a different group of professionals in his teachers. In the meantime, please don’t panic. He’s still your lovely little boy and it sounds like he’s making great progress, whether or not he is autistic.

I have already agreed to the assessment. I've been told it will e a matter of months, however, if he was just starting the process it would be iver a year until initial appointment. I was just wondering if anyone else had been in a similar situation, I.e. dint necessarily feel her the salt assessment was the accurate assessment and then either consented or not to further assessment and how it turned out? I'm not ignoring her, this situation has been trundling along for well over a year. I was surprised at her reasoning because most of what she said wasn't accurate, that was all. As you suggest I would certainly rather know if he does, primarily to ensure he has appropriate supports if needed.

Kindly, your SLT has concerns, and I think even though you don't agree you should go ahead with the assessment. Best case scenario they tell you he doesn't have autism and if he does then you can get all that early help for him. Some people wait years for diagnosis and have to fight tooth and nail. I see no negative exploring the option he may have autism now, rather than later.

Does your son go to nursery yet?

@Kchs232 hi yeah he does go to nursery, they have no concerns other than his speech. I am getting the assessment, that's not in question.

Hi @Justmadeoneup I just read your thread and I’m wondering how your DS is doing now he’s coming up to 4? Did anything pan out with the referral and the SaLT involvement? It did sound odd how she phrased some of the things.

I hope you’re all keeping well 😊

Hi so its a long story. Not long after this post I got the slt report and it was ridiculous, I challenged it and she changed it. I had taken it to nursery initally though and they thought i had accidently been sent another child's! The autism assessment began shortly after. Unfortunately the same slt was doing it. She did his nursery visit and then nearly a year later the ados. We had gave our feedback last summer. He was diagnosed as autisitc and as gestalt. We were really suprised but accepted it until we saw the report. It was shockingly bad. Lots of historical developmental info framed as current behaviour e.g just started to put two words together (copy and pasted from slt report last year) when in fact he has been speaking in sentences since he turned 3. Lots of stuff like that, lots of normal toddler behaviour pathologised e.g running sbout at nursery is apparently a sensory issue despite her noting he doesn't do it in any other setting, he didnt want to stop playing with a toy after 5 mins and she had to sneak it away which he didnt even notice. Loads of stuff that wasn't true as well. Just a list of behaviour no mapping to the diagnostic criteria and of course the whole process took nearly a year which isnt really ok when your talking about toddlers and consider their rapid development. So we challenged the report, not the disgnosis. We wanted it rewritten to explain how these behaviours meet the criteria and noted parts we fundamentally disagreed with. Meantime, we were very sceptical he was gestalt. He has never scripted, had echolalia or learned language in chunks. So we took him for a private speech and language assessment at a neuro affirming practice. We said he has autism and they think he is gestalt and want him to use an aac book and transition cards but we want to be sure before starting that. This was his first ever proper speech and language assessment. Turns out he isnt gestalt he has a phonological speech delay. He started slt around a month ago and the difference in his speech is astounding, so much clearer no more tailing off to jargon. Their assessment also looked at social communication and everything they observed lined up with what we already knew but directly contradicted the whole autism assessment. So at that point we felt the autism diagnosis isnt reliable and we aren't just seeing what we want to see. So given they were refusing to even discuss a single point we raised we made a formal stage 2 complaint. Ultimately he is getting a full reassessment done by a new team next year with all new notes and obs etc, not a 2nd opinion review. We dont beleive he is autisitc at this point, there are no signs whatsoever other than the differential diagnosis of phonological speech disorder. Unfortunately we are having to go further now to the ombudsman as slt is refusing to offer therapy for his speech disorder and still trying to push an aac book on him...

This is shocking OP. I was about to chime in and say no way would I be taking the assessment given what you said, and then I saw your update.

I don’t at all believe this line of accepting assessments just because an SLT (or nursery staff etc. for that matter!) said so. I’ve worked with many SLTs and, quite frankly, a lot of them are not the brightest and they certainly aren’t experts in autism. Always on Mumsnet, everyone bows down to “professionals” chipping in with their opinion on their children.

As soon as a kid is down for assessment, you can be sure they are getting that diagnosis. I don’t know a single child who has been through assessments to be told they aren’t autistic. I think the whole thing is a bloody mess and “autism” is the current go-to for absolutely anything slightly out of the “norm” in children.

Well done for continuing to pursue the best support for your DS. Good luck.

My eldest was prem and has ASD, despite failing most of the gross and fine motor tests it was never flagged, even the physio that saw him at a year old and said he had “unusual muscle tone” didn’t do anything. His speech was always fine but everything else was a red flag for asd/severe adhd/hypermobility. I wished someone had flagged it earlier and he’d got help before reaching crisis age 7 and becoming traumatised by mainstream school and we had to pay thousands for private assessments.

If he’s not autistic then he will do the assessment and be found not autistic and the worry is over.

Where does a solo SLT do an autism assessment? That doesn’t adhere to NICE clinical guidelines???

I didnt say it was solo. There was a paediatrician at the ados. The slt just did the observations etc first and was also at ados.

Yeah i feel like she came with an autism lens on and was determined to make it fit, hence incorrectly diagnosing him as gestalt, I assume because over 80% of autistic people are also gestalt. There was so much contradiction in the report as well. My health visitor came round last week and said that she doesnt rate salt at all and wishes she had never referred him for their support eith speech. She also noted they do no study/training at uni about neurodivergence....I agree with you as well, professionals get it wrong all the time across the board Anyway we are here now, will see what the assessment brings next year.

Yes this is the view we are taking, he either is or isnt and a good assessment will be able to detail why.

Thats awful that your son was missed for 7 years! This seems to be more common, parents fighting for their kids to get support which they know they need.

Every assessment service (NHS or independent) will be keeping data on assessment outcomes and diagnosis percentages. It would raise serious red flags if any service had no children not being diagnosed as autistic following assessment. This is just not accurate or realistic.

OP it sounds like you’ve had an absolutely awful experience with SLT and Paediatrics. I hope the second assessment brings more clarity.

As a mother of an adult son with ASD this would be my advice

I would learn everything there is about SPD or sensory processing disorder and put the exercises into play. If your son does not have ASD great as the exercises encourage positive development but if he does, you have had a head start.

Google exercises / therapy. for SPD

Such as bouncing trampoline or a swing
Deep hugs
Back pack with heavy weights etc
large bouncing ball - he sits in it and turns for north east south and west.

I would also google working memory exercises - receptive language tends to be an issue eg the I am going on a picnic game where each player takes in turn to add something to the list

I would ask nursery to get an EHCP assessment done - you don’t need a diagnosis

Children’s choice therapy have circuit cards for school with the standard activities on them for AsD / SPD

The paed would have diagnostic authority. Most SALT are not authorised to diagnose. You can request a second opinion. My son had one at GOSH with a multi discipline team. Would you accept that?

what comes across is that you really, really don’t want your dc to be autistic. You first disagreed with salt observation and report, then ADOS diagnosed autism, then you went private accepting autism diagnosis but questioning salt report and are now questioning autism diagnosis.

Take a step back. Your child needs support to thrive to the best of their ability when they start school. End of. Let them be supported to get the best start. It’s about what they need not what you want to be the case. If they don’t need the support the school will remove it quick smart.

Thanks for the advice. My son doesnt have sensory issues and his receptive language is age appropriate. Having said that if you feel they benefit all children's development I can certainly have a look, thanks.

Crikey, what an update! Firstly, thank you so much for replying, but also - I’m so sorry you’ve had to go through all that, and in many way you are still going through it all. It must have caused all sorts of stress.

I don’t agree with the PP who says that you don’t want to accept him as autistic. I think you quite rightly want any diagnosis to be valid and accurate and based in facts and reality!

It’s great to hear the therapy for the phonological language delay is working, what kind of exercises is it?

Well done for continuing to advocate for him. I’ll be really interested to hear how you get on in the future, if you are happy to update. Thanks again 💐

Go on the list - but I'll say my eldest ticked a lot of those boxes, and whilst he's dyspraxic, he'd not autistic (and he's a teenager now and still doesn't understand pointing TBH, so your little one is already ahead of him!)

I disagree with everything you said. I would never withold support from my child. Hence why I pay for private speech therapy as opposed to leaving him on an indefinite waiting list for inappropriate support which doesnt meet his needs. The private practice he attends specialise in autism, unlike the NHS slt. If he was gestalt they would know. He also wouldn't have benefited so immensely from direct phonological speech work.
Yes I questioned the slt report last year, as did the nursery and his health visitor beacsue it was ridiculous. The report was changed straight away without question. If it was defensible it wouldn't have been changed.
As I have already outlined, he is having a full NHS reassessment next year. Not a 2nd opinion. The NHS would never have offered that if they could stand by their assessment, diagnosis and report.
You are right that I dont want my child to be autistic. No parent in their right mind would want their child to have a diagnosis that will make their life harder in many ways. However, if he is autisitic then he is, my feelings woukdnt change that. Its ok to disagree with professionals, they often get it wrong.
Lastly, no i wont take a step back. I am doing what is right for my child, ensuring any diagnosis is accurate and that he gets appropriate support for his speech.

So he does something called fronting and struggles with letters k, g, p and t. They say he is stimuable for them as can say in isolation. They have done p and t so far. So it was repeating the letter like a t a t or u p u p u p etc and matching them with the voewls. They also clap out the sounds of words a lot. They do it in games so he doesnt really pick up on the repetitive element of it. Apparently its about changing the rules in his mind so just loads of repetition games and modelling the sound eith you mouth. Obvs the slt does more in session but thats what we have to do at home. Say things as well like look at my lips together and point at them when saying p for instance. He is now on consolidation break and will begin the other letters soon and then blending. He can now say p and t at the start of words though and is already blending them a fair bit. Its honestly like night and day.

Yeah i will as I need it just set in stone now one way or another. I shpudl have clarified in original post that he has been pointing eith one finger since he turned 2 before that it was whole hand pointing. The stuff with fine motor was about having no interest in putting cheerios into a coke bottle when he was 13 onths adjusted lol. He has no issues with fine and gross motor skills and hasn't other than that ages and stages questionnaire. To be honest there are no issues at all other than his speech and we now know why that is.

My little boy was referred to SALT when he was 2 by his private nursery and we were really surprised. The things in their report just didn’t line up with our experiences - said he didn’t do any imaginative play, liked to do the same things over and over in the same spot, liked lining toys all the time, didn’t play with other kids…whereas he wasn’t like this at home (certainly not as extreme as they described it).

At 3 he started the school nursery and because he’d been involved with SALT he automatically went on their SEND register and got a SEND plan.

To be honest, even though I disagreed and was really sad about the whole thing, it’s been the best thing for him. He’s had tailored actions on his plan, 1-2-1 sessions 3 times a week with the class TA…and the progress he’s made is incredible (he’s nearly 4 now).

So my view is go with it, even if it doesn’t fit your experience, any extra support is a bonus for your child (and an ‘autism’ label is just that, a label. Doesn’t have to mean anything and you don’t need to do anything with it.)