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Really struggling - DS possible ASD

(6 Posts)
mscongeniality Mon 30-Jan-17 12:26:03

I'm quite convinced my 21 month old DS (6 weeks prem) is on the spectrum.

He doesn't talk (only babbles) and doesn't point. He claps and waves and when he wants something will come over to me or his dad and whine for what he wants. We were thinking he's probably just developmentally delayed because he was premature but he has lately started doing this thing where he runs and looks to the side with his eyes. Also he is very active and doesn't like cuddles, never has unless he is feeling poorly or has hurt himself.

He has been seen by Paed and been referred to SALT but they are refusing to help him until he's 2+.

I am just in a bit of a dark place and can't seem to get out of it due to the uncertainty the future holds. Please tell me it won't be as bad as I'm thinking? I think cognitively he's okay, because he understands simple things and loves things like shape sorting and stacking. Just don't know if he will ever talk?

Baggins2012 Mon 30-Jan-17 12:57:48

First of all- a big hug and flowers

I was in a similar situation to you and it is the absolute worst feeling in the world when you think your child may have an issue. It is always there at the back of your mind no matter what you are doing and you just want someone (preferably a professional!) to say "your child will be absolutely fine and will talk". Unfortunately no one can say at this stage whether he will talk or not.

My son is 20months and he doesn't talk, point, follow a point, have much interest in his siblings or other babies. In terms of what I feel helped/hopefully will help me:

-Focus on what he CAN do

Positives to focus on for your son:
Clapping and waving are the first signs of pre-verbal communication so that's great!

He is able to understand certain things-receptive understanding come first before expressive communication and as long as he can understand a few words and instructions then that's also great.

- speech therapy

I am in a Lewisham borough and they give speech therapy from 18months old. However, I was told by various portage workers, gp, and even pediatrician herself that it's only from 2years old. Call up the local speech and language therapy department and ask to speak to a therapist to find out from them what age they accept referrals.

-private speech therapy

While i was waiting ti get off the Nhs waiting list i got a private therapist. 1st one was recommended and apart from being very positive did not give me any practical advise on how to help my son. 2nd therapist gave me some good tips on communication.

- aba therapy

Apparently aba is a controversial therapy but I found an amazing consultant and I do the aba programme at home myself with no tutors so that makes it slightly more cost efficient. Search mumsnet talk pages for more info-as there is loads on here.

- Hanen have some good books on communication.

-the earlier intervention the better. So find different ways, online/mumsnet to help a toddlers communication.

-I'm still in a hard place. Everyday i wish my baby was able to at least say "mama" or even look at me when my dh says "look, there's mummy".
Help your son as much as you can and always keep on focusing on the positives.
Don't downplay what a great thing it is that his understand is improving!

PolterGoose Mon 30-Jan-17 14:02:05

Message withdrawn at poster's request.

mscongeniality Mon 30-Jan-17 14:17:41

Thank you Baggins and Goose...

I have days where I think that I just don't see any ASD signs in him, but I do have a tendency to get anxious about things once they are on my radar and unfortunately I am just looking at every little thing he does now - which I'm sure a lot of it is normal toddler behaviour!

You're right in that his non-verbal communication isn't bad because he makes sure he gets his needs met. He doesn't like to play alone and hates being left alone on his own to get on with things. My mom was visiting us for two weeks and he got so attached to her and learnt more with her than he does with me! She left on Sunday but I'm thinking about taking him to spend more time with his grandparents because he comes on so much when there are more people around.

At home he is fine and easy to manage - he doesn't have major tantrums and is usually in a good mood. However he LOVES going out and is constantly trying to grab his shoes and stand by the door (his signal for lets go out!). When he's out he just wants to run off and thats when I find him hard to manage. He can walk down a street with me holding hands but sometimes tries to get his hand free so he can run off..he's definitely a toddler who needs reins in a busy place!

He wouldn't answer to his name much and wouldn't follow a point often but now he does both of those quite well. Also only in the last week he has started 'sharing' things, such as today I was just sitting down and he picked up his Elmo doll and brought him over to give it to me.

But when I do the MCHAT he gets medium risk due to no speech and no pointing. With everything else he's fine he's just a hyper toddler otherwise and no one who meets him would think anything else.

The running with his eyes to the side thing is the only other red flag I have seen but its not something that he will do obsessively over and over so I'm not sure if it counts? He likes opening and closing doors too but he does it maybe 7-8 times and then gets bored and moves on.

Baggins you sound like you're coping very well and I'm very impressed with all that you're doing with your DS. I wish you all the best too.

mscongeniality Tue 31-Jan-17 08:58:59

I had a private SALT come over yesterday to do an assessment on him. She was here for two hours and brought games and toys and after playing with him she said that in her opinion he's not on the spectrum however he does seem to have some trouble organising his cognitive/fine motor/communication and she suggested that he gets an assessment done by an Occupational Therapist. She said he is intelligent and doesn't seem to have any learning disabilities. She said he did seem a bit behind his age which I know is true and think it's part of his prematurity.

My question is how good are SALT at assessing these kinds of things? Obviously I feel a bit relieved and I'm going to get him assessed by an OT. She did say that I was doing the right thing getting him early intervention as he needs to learn through proper 1-1 time.

Baggins2012 Tue 31-Jan-17 12:00:47

That's great that he was seen and that the SALT was positive.

In my experiences, and what drove me mad, was that no professional was/is willing to say anything even vaguely about my ds' future.
He is under an OT , SALT, portage and pediatrician and they are all reluctant to make any sort of definite statement as they just dont know.

He had physio for 6 months and his Physio said after 2 sessions that in terms of his gross motor skills he will be delayed but fine. And he has caught up physically now.

Just going by my experiences i would say that if a person who is an expert in a particular area (so SALT is jn communication)is being positive about your ds then I would be very very relieved and would trust her.

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