Not sure how to react after 1st SALT assessment

[zen1]

DS3 is 25 months, and after seeing a paed in October was "diagnosed" with mild developmental delay (and gross motor delay, but not sure if that's related)and has been referred for portage, SALT, and OT. He is also under the physios as he still can't walk (hypermobile). I have concerns about sensory issues and some of his behavours (from what I've read, I would say they are stimming behaviours).

Anyway, we saw the SALT for a first assessment yesterday, who basically observed him while he played with a few toys on the floor (tea set, shape ball, teddy) and tried to get him to follow simple commands, which he wouldn't do because he just wanted to do his own thing. Admittedly, he doesn't play with toys like most NT 2 year olds, and preferred gathering them and opening and shutting the shape ball when she asked him to. However, he was enjoying the open and shut game and when she tried to get him to do something else he wouldn't. Even after taking away the lid, he simply used the lid of a toy teapot to put on the ball.

At the end of the session she said she saw no evidence of ASD in any of the 3 key areas (he
is sociable and did make eye contact and was smiley). However, she said she noted he had some repetative behaviours and sensory issues. What really hit me though was when she said he had "significant" speech and language delays and put him 12 months behind his chronological age. I don't understand how she arrived at this conclusion because he has 40 words now (including hello, bye, night,night) and has progressed a lot in his understanding in the last couple of months and can follow a lot of commands. I know there are probably bright 13 month olds who have the equivalent language, but the SALT said to me that by 18 months most children are putting 2 words together and can speak in sentences by two. None of my kids did. I was just interested in what others thought really. Am I burying my head in the sand?

Here are some milestones here.
You should grab any SALT on offer as it will not do any harm.
My nephew had GDD / little speech or playskills at 2 but had caught up by 3 with weekly portage and twice weekly private SALT.
My son was typical at 2 with 2-3 word phrases etc etc but then regressed and has ASD.
You can score the MCHAT yourself (find it online) for ASD so you can keep tabs on whether you think thats a possibility - signs can emerge more clearly between 2 and 3.
A 12 month delay does sound like over egging it
However sometimes professionals do overestimate problems to help eg perhaps you need a 12 month delay to access services
Sometimes children with little speech and poor play skills do look a bit ASD but then once their speech improves the ASD symptoms reduce.

Thanks for your reply Agnes. I hadn't seen that list of milestones before - DS does fall short of several of them. I've looked at the MCHAT and although he does point now, he didn't do it by 18 months. There are a few other things that have made me wonder about ASD. However, the SALT and paed both seem to think he doesn't show signs of this because of his sociability. SALT said there was nothing she could do that I wasn't doing, but wants to keep him under monthly review. She and every other professional I've seen said that they wouldn't diagnose ASD until a child is 3.5 because they are too young to diagnose before then

What does he do that is sociable? Wouldn't refusing to engage with someone elses game be classed as anti-social?

Sorry that came out a bit blunt.

What I meant to say was that whilst I am not saying for one second that your ds has ASD, there is nothing in any of your posts that would reassure me that he didn't iyswim.

It doesn't sound like you've had a very thorough assesment and eye contact, socialability and smiling, whatever they might tell you is NOT the triad of impairments.

None of those need to be absent for a dx.

And the suggestion that a child cannot be dx before 3.5 only enables ME to dx THEM with insufficient ASD training.

My DS is 2 has significant delay in all areas - we were told he was about 12 months behind. He has no words, has only just started to babble, he can only follow a couple of simple instructions like 'arms in' or 'arms up' but only on situ if that makes sense!

Star, they think he is sociable because he interacts with other adults (SALT said "can I have that?" and DS smiled and gave her a shape). He also seeks out adults to play with him, eg, he likes rolling the ball back and forth with anyone willing to play with him. Yes, I thought refusing to comply with the SALT's other games (infact, he just ignored her!) would be classed as anti-social. He definately just does things on his own terms, but does enjoy it when adults play with him. Loves round and round the garden, row,row, peek a boo type games.

However, like you say, I am not convinced he is not on the spectrum and every time someone says we'll have to wait to see what he's like at 3, I just feel like intervention time is being wasted. I'm sure they won't budge on this. Didn't your DS get diagnosed at 2? I don't understand why some paeds will diagnose earlier and others won't.

zzzzz thanks for telling me about your experience. It sounds like you had a good group of experts involved in your ds's case. What is SLI, if you don't mind me asking? Is it a language impairment?

1980sport, I have read some of your posts and my DS sounds similar to yours especially in regards to the gross motor skills development. He has just started to pull up and take tentative steps around the furniture.It does make sense about following commands in situ. My DS is able to follow commands in general, but he only recognises a lot of nouns in situ, eg to him the table is a specific table at home and if you were sitting in a restaurant and asked him where the table was, he'd be confused.

That's fantastic to read about your son zzzzz. I will keep that in mind, when I'm worrying about DS's future.

Sorry for ignorance zzzzz, just read your thread and now know what SLI stand for.

zen I'm sorry (REALLY not meaning to be argumentative) but again, nothing that you have posted there would rule out a dx of ASD and you are absolutely right about early intervention opportunities being wasted.

They WILL budge on this if you make them, or you could get a private assessment/diagnosis.

My ds is extremely sociable. Never plays on his own. Always seeks out adult company. Is quite demanding that someone plays with him, has excellent eye contact and yet he was diagnosed verbally at 2yrs 3 months with moderate-severe autism.

Honestly. I'm not saying your ds IS on the spectrum. How could I possibly know? But I am saying that nothing you have said here rules it out, and straightforward autism is easily identified from around 18months, but actually can be suspected far earlier than that and if in many US states would be 'treated' until proven wrong as that is just the most sensible thing to do quite frankly.

I suspect (and this is just my opinion) that 'because' there is nowhere to refer you for treatment until school-age, or at least school age because the NHS don't deal with treatement it is stupidly the remit of education, that they can feel justified in a wwait and see approach until that time. Additionally, any SLT at that point would come out of the education budget rather than theirs.

So, they don't see that a diagnosis is particularly helpful as there is nothing to access with it, which fails to account for the immense differences that parents themselves can make if they have a bloody clue what is going on.

zzzzz, I was up at 4am this morning doing that very thing (worrying). Thanks for book recommendations - I will look them out when I am less tired! I know what you mean about getting things sorted before school. There are loads of really knowledgable people on here and I just don't know where to begin! A couple of weeks ago the pre-school I had put DS down for when he was a baby rang and asked if he wanted to start after Easter. I had to explain that he couldn't walk or talk yet. They were really nice and said they would work around him and he was still welcome to start (DS2 went there so they kind of know DS3), but I can't contemplate sending DS3 to pre-school when he will be perceived by the other children as a baby.

Star, don't worry, I know you're not being argumentative and I would be very surprised if DS doesn't eventually get diagnosed as somewhere on the spectrum. My DS is also demanding that people play with him. I wish they would treat it as ASD until proven otherwise. None of the professionals I've seen have heard of the CHAT early diagnostic criteria, which says a lot. I guess the only triumph I've had is that initially the OT's refused a referral from the paeds on the grounds that DS has age-appropriate fine motor skills. However, when I rang them and explained that he won't feed himself with a spoon and has sensory problems, they changed their minds and have now accepted him. What a palava!

The other thing is, how do I go about challenging the "experts" on their belief that because DS is sociable, he is unlikely to have ASD? If I try and argue it out with them, they'll probably just think "who the hell does she think she is? We've been working in this area for x many years and our opinions are based on a plethera of experience"

Thanks zzzzz it does help a lot to hear about the great progress and the positive stories of other dcs!!

And zen great news about the pulling up and first steps! Ds1 stood yesterday with me in front if him and him holding my hands, I had a little cry afterwards I was so delighted! He hates people pulling or touching his hands and never holds on to anything like the front of a swing so this was real progress for us :)

I will use that approach next time I see a professional, zzzzz. I don't want to come across as aggressive, but I do want them to take my concerns seriously. Took DS to his weekly music group this morning and it is becoming more and more obvious that he is different to other boys his age. I can see the other mums looking at him wondering what's wrong, why he's not interacting etc.

1980Sport, I am pleased with how much my DS has come on physically since he first started to stand. He couldn't even weight bear till 21 months. Now he can stand alone for about half a minute. He's still very wobbly, but I have hope that he'll eventually walk unaided. It is hard when they don't want to touch or hold things. My DS is fine with holding hands and soft suraces, like sofas but won't pull up on the baby gate / chairs or anything hard. He even mistrusts things like door bells and light switches and won't touch them at all. Strange.

YOu know what? With the internet and our general culture now, doctors are quite used to being questioned/challenged etc.

Gone are the days when they have a dictatorship over parents. They are expected to work in partnership.

If you write to the Paed saying that you would please like a proper investigation into whether your child has ASD and state your reasons:

1. List of likely symptoms
2. Any research or just a paragraph about how important early intervention
3. Needing a dx to access support in this climate

They'll probably just say 'oh ffs come on then, let's see what we can do!'

A letter like that will ensure they weigh up your wrath should they refuse and the potential blame for not acting faster if there is a subsequent diagnosis.