Back and forth between ASD and speech delay, anyone with similar exp?

(4 Posts)
Mrsremlab Mon 11-Feb-19 12:09:48

Hello everyone, apologies in advance as this got long, I havent given myself the chance to think about this for a while and I got carried away.

I posted a while back about my concerns with my son. We have seen the ped and are now having speech and language therapy. In a nutshell, the ped said he is concerned, but at this age (my son is 22m), it could go either way. He said that troubles with communication has a domino affect on so much, my son cant communicate, so his social skills are poor, etc. He said if it was a speech delay then he would just come on in time, and if he did have learning difficulties we would cross that bridge when we came to it. I totally respect this as he is still quite young.

In the meantime, my son has made some great progress and I find myself going back and forth between him potentially being on the spectrum, or that it is a speech delay. While he does have some rather strong autistic traits, his progress is really good and he shows promise! But then on the other hand, most children on the spectrum have to progress eventually. I suppose Im still looking for answers no one can really give me at the minute. Im sure most of us have heard 'give it time' at once point in our SEN childrens' journeys, so Im sure you can sympathise with the frustration!

My sons eye contact has really picked up, hes started to respond to his name well and a light seems to have flicked on. Hes no longer vacant and isolated, of a fashion - he still likes to play alone and often removes himself from groups but its improving. He also said his first word, cat! Hes starting to wave and claps when I say "Yay!". He still flaps quite a lot, and still isnt pointing or communicating with me his needs. I think because he isnt having tantrums or sleeping problems, I think in my head perhaps he wont be on the spectrum after all.

I just dont know, I feel like I accept things are the way they are for a long time but then catch myself thinking about the future and just wanting some more information. What was your LO like around 22m before diagnosis? Thanks for reading!

OP’s posts: |
LightTripper Mon 11-Feb-19 15:53:46

My DS is about the same age (about a month older) and had very few words until a couple of weeks ago. We were very watchful as my DD is autistic and we still don't know, though he's had a little word explosion in the last 2 weeks so we are less concerned now. By contrast DD, despite being autistic, had a lot of language and was already making sentences at that age. So I sympathise with experts finding it hard to Dx (or not) so young.

I think actually the autism diagnosis comes more from communication difficulties than lack of language per se. DS has much less language but communicates his needs pretty successfully using a lot of pointing, grunting, gestures (pointing in his mouth if he is hungry, shrugging and saying "huh?" if he's trying to find something or somebody), etc. DD had a big vocabularly and lots of phrases by this age but didn't start telling us that she was hungry or thirsty probably until she was closer to 3, and was less social than DS is (more anxious around other children: liked to do her own thing or play with adults who are more predictable).

In case it's reassuring, my DD is now nearly 5 and is attending a mainstream school with no 1:1. She does get a bit anxious about things, not great with change, but is doing well at school and loves going, has a few friends (despite not being at all social when she was your DS's age, playing "alongside" rather than "with" until later than usual, etc.). So an autism Dx need not be a disaster. It's just a sign that your child has different needs to the rest of their classmates - but if those needs are met they can still be happy and successful.

The fact your DS is engaging and communicating his passions is great news whichever way it goes - I would just try to get into his world as much as you possibly can - share in the things he enjoys and see if he will let you in enough to just "tweak" his games or contribute your own ideas in a way he finds fun and engaging (so he learns that letting other people in can add to his own fun too) - it's all good practice for sharing and turn-taking when he's a bit older.

magicroundabouts Mon 11-Feb-19 18:19:34

I think the time before you know for definite is so hard. I can remember feeling the same. I wanted answers, but no one could say for certain and then I’d read up on autism and think well that doesn’t fit, so is he?

At 2 years, as well, the gap with peers isn’t as wide and so behaviours don’t stand out in the same way. It isn’t unusual for an NT child not to speak much before 2.5 for instance. DS has always chewed his toys, at 2 this seemed fairly normal, but not at 3. There are also so many different subtle ways autism can present and it can be hard to look past stereotypes. DS for instance has always been very cuddly and affectionate and to begin with I thought that he didn’t have any sensory issues. In fact this, along with language, is the area he struggles with most. I just didn’t know that sensory seeking was a thing (and that you can be sensory seeking and avoidant at the same time).

When I look back though, the biggest indication at 2 was that he never asked for or drew your attention to anything. DS would script and could label objects, but would never gesture and ask for a banana. There was a potential explanation for everything else, but not his lack of non-verbal/verbal communication once hearing had been checked.

Although it is hard not to know either way at the moment the fact that you are in the system so early is really positive. It means you are in the best position to push for/access support should DS need it and have this in place for starting school.

LightTripper Tue 12-Feb-19 12:06:01

When I look back though, the biggest indication at 2 was that he never asked for or drew your attention to anything. DS would script and could label objects, but would never gesture and ask for a banana. There was a potential explanation for everything else, but not his lack of non-verbal/verbal communication once hearing had been checked.

Yes! This was exactly it with DD too. She had some language differences (which I realise now were scripting though she always used her scripts appropriately so it just sounded like slightly grown up language). But the lack of pointing (other than in books when we asked her "where is the cat?") and of asking for things seem to have been the big red flags for the assessors.

It drives me a bit crazy that for all the "milestones" in the red book, neither pointing to draw attention to something nor asking for something are actually in there, despite being seemingly such crucial developmental milestones!

I also agree being in early is good. Although all the uncertainty has been very hard for us as parents it does mean that DD has always had people looking out for her and helping her build the skills she needs/finds tricky, and e.g. understanding when she hides under the table during a fire alarm or doesn't want to go into her dance class because it's too much to process. Hopefully that will in the long run mean she has a better experience of school, learns more, and has more confidence in herself by knowing and accepting/appreciating her differences.

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