Non.verbal autistic son: I am veeery Worrieeed :(

[Soumia]

Dear mums

I have two autistic kids...

I have tried speech therapy and reading books...+ABA therapy etc and worked well with my daughter...she started talking since last year and is improving...

But the problem is my son.is not even babbling..

He makes sounds like:

Niaaa...Miaaa..kaaLa...grrrr

But never mumy or mama or any meaningful sounds :(

I am very worried...

His hearing is perfect...his receptive language is improving...

2 years ago he was never responding to any instruction with zero understanding...as if he would be a deaf...

Now...he responds to verbal.instructions although sometimes he gets confused...

Does speech need the cognitive abilities to mature before it comes out?

Recently i even suspected Apraxia in his lips as he cannot kiss...he can.only join his lips together and release without exerting qny.pressure...ge cannot :(

He cannot blow a candle and cannot pronounce letter F.. W...M...

Have you experienced similar symptomes with your ASD kids?

I am.confused if he cannot speak or refuse...but when.he cries...he never say mamy...or makes any purposeful sound...hd just cries EiiiiEiiiiEiii

This scares me further

He will be 5 soon and I am very worried...

Sometime i worry if he would never talk

I started using.pecs with him.and he wonderfully discriminate the picture and gives me the right one for what he wants...so we are in.phase 3 PECS...

Sometimes i think it is just a matter of time and he will be improving... but then.when i think.again i get confused that he will turn 5 soon...and I must catch up and save him.before he reaches 7 years old...

I was told that if he foes not talk before 7...it will be impossible after

But when i meet parents whose kids are older and non.verbal i get really frustrated and cannot even.sleep at night...i will end up depressed

Please advise me how PECS helped the speech to come out with your kids?

Also, what should I try?

I am.veeery WOoorieEEDDD

My I ask why you are so against him going to a Special School?
To be blunt..he's not going to manage in mainstream and mainstream will not manage his needs. It may be doable for Foundation year but after that the pace of learning speeds up very rapidly, and a non verbal 5 year old is not going to learn from his peers with any degree of success without a lot of input that frankly mainstream just haven't the time or funds to give.

I see this all the time.. I used to work with Special Needs in Mainstream and now in Special Ed and we have an awful lot of children whose families (understandably) wanted mainstream and for the first year it was ok, by year 3 they were were us, and had missed out on time that could have been spent better.

Special School are used to PECS. Mainstream rarely. Ditto the sensory needs, behaviour difficulties etc.
The other aspect is in special school your child has more opportunity for forming genuine relationships wih other children. I work with children who have very severe autism and there are some lovely bonds between some of them; granted not typical play relationships but nevetheless itis lovely to see.

Please don't rule out Special School.
(For what it's worth my own youngest started in Mainstream, moved to Special Ed.. he was non verbal. He made huge progress, and as a young adult now is semi independent with a job!!)

Oh OP you sound so worried and stressed but really the special needs place is where he needs to be to get the care he needs

OP it sounds like you are receiving very little real-life support on the speech front.

I have a son diagnosed with apraxia (plus social communication issues) and my experience was that it is very hard to get speech support at the pre-school years when autism is suspected, as the failure to speak is put down to the autism/lack of motivation to engage, and either the professionals find it hard to spot that there is another issue or just jump to the conclusion about it being caused by autism. It took us a very long time to get our apraxia diagnosis.

If it is apraxia then he will need intensive speech therapy and, as other posters have said, you need to consider choice of schools carefully. My DS attends a special language unit attached to a mainstream school and it is amazing, he receives lots of individual attention and there is a qualified SALT there two days a week. We were told if he went to a mainstream primary he would get one SALT session a term (despite having no spoken language at all at the time of this assessment).

It is good that your son is doing so well with PECS and follows instructions. I have been told that it is much harder to teach understanding of language than speech. Our DS's language understanding has definitely developed in fits and starts and it seems that children's brains can go on developing.

In terms of the therapy we have done for apraxia, the early exercises we did involved just posting cardboard squares with letters on them into postboxes, crocodile mouths and anything else you can think of that is fun, and saying the letter sound. To my amazement about 3 weeks later he repeated one of the consonant sounds - the first time he had ever made that sound. It was about exposing him to the sounds. Its not a quick fix though. The SALT has spent about a year trying to teach him to say the vowels, which are hard, as he will try to say one but say it completely differently each of the 5 times he attempts it. His vowels are still unsteady but he has now moved onto combining consonant-vowel and he can now say about 5 simple words (eg bye, more). He has to be taught to say each individual word, but progress is starting to pick up now he has some of the building blocks in place. I don't know if he will attain full speech but there are lots of other communication methods and we notice the lack of speech less now he is older.

Good luck and hopefully once your current uncertainty is passed you can start to feel more relaxed.

What do yoh mean by...

it might take a few people before you find one who is effective with him...

I have already wasted 3 years on the diagnosis process and 2 years as a chock not knowing what to do...
Tjey put me on a very sillh parent course early bird...useless

Do you mean PECS HELPed his dpeech yo come out?

J started pecs last month...we are on phase 3 ...

I have used the hanane and more than words...i have that book...it hrlped my daughter... but my son...is just either refusing to talk or may be he really cannot?

I am coonfused...

@123bananas
How did you get your son tk talk...exactly...what was ur strstegy...how did you ma0nage to get him say his first word or babble his first meaninful word?

Plz share you success... i am hopeless and saad :(

Well...i know enough about specisl schools that put me off...

@SparkleTwilight
What do you mean by:
his speech has now increased and so has his sensory seeking behaviour.

Do you mean his sensory issues increases with speech?

My son throws anything up absolutely anything and he lices seeing things moving...etc...he is very visual...

Always on the go...very active...andnot sure if these needs are hindering his speech to.come out...

I meant that his sensory seeking behaviour has decreased. He is coming home from school happy and he is talking a little more, whereas he was the opposite when he was at mainstream nursery.

I used to be a primary school teacher (mainstream) before having my son and I have worked with children on the autism spectrum. Mainstream schools are very under-funded in regards to SEN support, so if you have a child who is non-verbal he would not get the same level of therapy and support there as he would in a special school. You would have to find a very supportive mainstream school, there are a few so look around.

I know know you say you are judging special schools by what you have heard, but have you visited any?

@SparkleTwilight
Thanks for advice...

I havd been doibg research and visits since 2016....over 3 years...special schools are a disastre...

I have many friends who works for both mainstream and speacial...etc

Special schools aren't a disaster! For many they are the best option, better than MS. A SS now doesn't mean he has to stay there, he can move to MS or MS with a unit if that is in his best interests later down the line. Yes, some SS are better than others just as some MS are better than others. But, which school is best for one child will be different to another child. Have you visited every possible SS within travelling distance?

Did your DS have an OT assessment as part of his EHCNA?

How my son started speaking...

Pecs. There would be a bucket with a picture stuck on top and a toy he wanted in the bucket. I would take his hand and get him to take the card and model handing it to me whilst I said the word for the toy in the picture e.g bubbles. Then after a minute of playing with the toy it would go back in the box and repeat. Then he would take the picture card and hand it to me but not say the word so I still modelled the word, eventually he started saying the word himself. Then we moved onto saying more bubbles once it was put away e.g.

He would give me the picture and I would say "oh you would like more bubbles". Then eventually he began handing me the card and saying more bubbles. The trick was to use toys he really liked like bubbles or ones with moving parts and only let him have them at that time so he wanted to engage.

My son then learnt request phrases using pecs "I want ..x (picture) ." then progressed to adding an adjective "I want red ...". I think when he got the point that talking meant he got what he wanted then it helped him want to speak more. Also DH did lots of talk time 1:1 playing with toys from TV shows he liked watching he imitated phrases and DH would model speech between the characters.

Watching Bing and Topsy and Tim helped him too as they are like social narrative stories that helped him understand the world and develop language.

I have worked in special schools and mainstream, they are not a disaster, in general the staff are dedicated and have so much more time and understanding of autism to meet the needs of these children. My friends non verbal autistic child has just moved this year from mainstream to a specialist school and is already speaking more words. Alternatively my son is in a supportive mainstream school, has progressed well and really developed his social skills, but we have done a lot of speech work at home to supplement. Whatever is best for your child.

Took a year to get speech services. Still decently non verbal.

@Soumia do you have an update how is your ds, is he now verbal. How dies he find school