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Here are some suggested organisations that offer expert advice on special needs.

Original poster

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

37 replies

Soumia · 25/09/2019 16:36

Dear mums Flowers

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 Sad

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

Sometime i worry if he would never talk Confused Sad

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 Sad

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 Hmm BlushSad

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

Also, what should I try?

I am.veeery WOoorieEEDDD Sad

OP posts:
Onceuponatimethen · 26/09/2019 00:15

I’m really sorry to hear about your son’s difficulties. That sounds very difficult.

I had a child with less significant speech difficulties, not presenting the same and different cause but I know a little bit about how it feels to be scared about whether they will ever talk.

I think what might help is for you to call ICAN the speech charity - they have a helpline where you can get a call with a qualified speech therapist. They may have ideas and be able to discuss with you what speech therapy your son is currently getting and whether you can push for more.

National Autistic Society have a helpline and I hear it can be very good

Original poster
Soumia · 26/09/2019 07:09

Thanks so much...i will call them today

OP posts:
Onceuponatimethen · 26/09/2019 08:21

Great plan! If you think your child isn’t getting what they are entitled to then Contact a Family helpline is also amazing

Original poster
Soumia · 26/09/2019 11:42

What is family helpline? Is it a charity?

OP posts:
openupmyeagereyes · 26/09/2019 11:44

I think it’s this:
www.contact.org.uk/

I believe they do some free books that you can sign up for too.

Original poster
Soumia · 26/09/2019 12:33

You ard very kind snd hflpful...just called thfm anc left a messagf...

Please let me know of anh other organisations or charitues plz...

My 2 kids are just diagnosed last yeaf and I am quite novice ...

OP posts:
Mummy0ftwo12 · 26/09/2019 20:14

My son couldn't blow out candles before 4 or put his lips together to kiss and at just turned 4 has 3 or 4 sounds he can't make.

What speech therapy experiences have you had? it may be that you need an a specialist, might be worth checking this place out www.londonchildrenspractice.co.uk/specialist-assessments/

Original poster
Soumia · 26/09/2019 21:54

Thanks for your message.

My daughter is verbal so she had a SALT while she was in reception last year.

My son Sad is 5 this january and still not verbal and with NHS cuts they refused seeing him as he is not in school...(we are waiting for the appeal hearing at the court...as we are against sending hom to a special school).

The only time he had SALT seeing him was in 2018 as part of thd diagnosis assessment.

I just checked the link u sent...thanks...it seems a private assessment :(
I guess it is a hell expensive Hmm BlushSad

Impossible for me to afford it...i am looking for charities like ICAN...etc

Do u have any ideas?

OP posts:
Mummy0ftwo12 · 26/09/2019 22:13

ah, so your son isn't receiving any speech therapy currently? and possibly has never seen a speech therapist who specialises in young children with autism? I would strongly suggest you look at these people www.cdspeechtherapy.co.uk/ i think its 60 for fortnightly sessions and local to you

Original poster
Soumia · 26/09/2019 22:34

There were 2 speech therapist in the diagnosis team...but they just assessed his poor eye contact that time...one of the SALT was specialised in autism...

His eye contact improved a lot as well as his receptive language...but still.well behind...i am too woooOoorieeedd SadBlushAngrySad

OP posts:
SouthWestmom · 26/09/2019 22:37

So what is in the EHCP for speech? They must have written in some form of provision?

Mummy0ftwo12 · 26/09/2019 22:42

this is a good website teachmetotalk.com - it helped me a lot when my son was pre-verbal, there are lots of free podcasts on there.

There is also the book 'More than Words' written i think by the same people who invented PECS which is recommended a lot.

But the speech therapy company i recommended above really helped my son, but its taken two years of regular therapy appointments.

Original poster
Soumia · 26/09/2019 22:49

30£ per hour is too much Sad

I am on low income and foing ABA for 2 kids...

OP posts:
Original poster
Soumia · 26/09/2019 22:51

They suggested something like using pecs...etc which I am.doing it with ABA...i self fund it...too expensive Sad

OP posts:
Mummy0ftwo12 · 26/09/2019 23:18

Maybe one session a month would be better than nothing?

Also have you considered moving to an area with a state funded ABA school? www.abaa4all.com/schools-list-1

Original poster
Soumia · 27/09/2019 07:23

Thanks @Mummy0ftwo12
Very useful link...

But state school = public? Are they free?

OP posts:
Mummy0ftwo12 · 27/09/2019 12:22

i think you need to get them named on an ECHP and the LEA pays

SouthWestmom · 27/09/2019 18:10

That list is a mix of independent and 'free' schools - the LA will be u likely to name an independent if they say alternative provision can meet need.

You have a school named in your EHCP and are aiming for ABA in mainstream. So your appeal needs to prove that.

Original poster
Soumia · 03/10/2019 07:58

After some in depth research...i think the best option is to assess my son sensory needs and work on them as a priority...

A mum told me that sensory needs if not bet...they would hinder speech to come out Hmm

Is this true?

Can u recommend any OT in Bristol?

OP posts:
openupmyeagereyes · 04/10/2019 07:39

A mum told me that sensory needs if not bet...they would hinder speech to come out

You need to investigate to see if you can find any evidence to support this theory. It may be true, it may not, but don’t rely just on the word of one Mumsnetter.

Mimishimi · 04/10/2019 07:46

My son had a severe speech disorder. He was diagnosed at 3.5 He was not talking much at five either. Get him into speech therapy right away ... it might take a few people before you find one who is effective with him.

JessicaKenny2018 · 04/10/2019 08:04

I have to agree with @Mimishimi my son is 3.5 and he has been on the waiting list for speech therapy for 18 months and although they have generally put him being non verbal down to his autism they also want to rule out any speech disorders

123bananas · 04/10/2019 10:12

My son was non verbal and we were sent on the Hanen course more than words (you can buy the book) and also used PECS. He is now fully verbal. Push for reassessment of he is now engaging more as he may be able to access PECS now.

SparkleTwilight · 04/10/2019 19:22

Can I ask why you are against a special needs school? My son has just turned 5, he started attending a fantastic SEN school this year and already has made lots of progress. He was verbal before (very basic speech) but his speech has now increased and so has his sensory seeking behaviour.

SparkleTwilight · 04/10/2019 19:50

What I meant to say is his sensory seeking behaviour has decreased