Completely Non verbal at 2 years 9 months.

[kellbelle92]

Hi all, my son has had his diagnosis finally. He’s completely non verbal to the point he’s never said a word. Does this mean he will likely stay non verbal? He communicates by dragging people by the hand to things he wants, this is quite a wide range of things. He passes us things he wants help with and is starting to engage in joint attention. The biggest barrier is he will not mimic/imitate anything or babble. I would just like peoples honest opinion, without sparring my feelings, from other experiences, is it likely my son will ever talk?

Nurturing Neurodiversity on YouTube has just posted a video of her ds’ progress from being non-verbal to starting to talk at 4. You may find that helpful.

The understanding is an important indicator, DS2 is still non verbal and is a teenager, but also limited PECS, one makaton sign. Its his severe learning difficulties along with autism that is the biggest barrier. He was one of six in his group of non verbal toddlers (we were put together in a group support) at 2/3. He is the only one still completely non verbal, the other have various degrees of spoken language. The children are spread out from one supported in mainstream to various levels of special schools.

@Boulshired thanks for your reply. Do you mean the understanding of language and filling instructions? My son has recently started showing more understanding but definitely not age appropriate. He will not imitate makaton signs at all. I was under the impression ds has learning difficulties to be honest, but his paed has just said asd, no global developmental delay

My son was non verbal, but he had complete understanding. He had daily speech therapy at nursery and school from 3 to year 2., he still struggles with the ch sound and some others are not completely clear. Always in a mainstream school. The scln unit was attached to the school.

DS2 was not diagnosed with learning difficulties until much later although he did have global development delay diagnosed. At this age he was mainly using photographs as PECs. His receptive language has always been ahead of expressive. At that age he understood simple words but not much more and at this young age engagement was very difficult.

@Boulshired I have a feeling ds may end end up with a learning difficulties diagnosis to be honest. He uses peoples hands as tools as if he doesn’t understand he can do it for himself. And also hand leads all the time, no speech at all. Is this something you experienced with your son? Sorry for all the questions , I’m so new to this and have no one who has any experience

He has always guided by pointing or attempting to get it himself. He uses people as a vehicle to get what he wants, although he has formed relationships with people in his own way. I have met children along the way who were very much like my DS at toddler years and have gained some language. I have found for some reason that there seems to be a jump at 4 and also 7. Some of his peers gained various degrees of language at these points. I know my paediatrician at the early years didn’t want to box him it or limit the expectations in regards to education. The only makaton sign he has learnt is please / thank you but he mainly uses it as “I want”. Try to stay positive, I know it’s easier said than done, he is still young.

So was his formal diagnosis (in writing after ADOS/MDA) autism? my son was non verbal and had no understanding at 2.5 (first words came at 3) but he did hand lead and use my hand as a tool and the pead 'said' classic autism but that was not the formal eventual MDA diagnosis.

I think hand-leading is a good sign btw, there's an interview with Keith Duffy about his autistic daughter and ABA therapy, in that he mentions that he felt like hand leading was the first sign of communication from her and she did go onto speak.

Yes, after Ados she concluded he meets the criteria for autism. She’s saying moderate autism mainly because of the fact he has no words,
Other behaviors are not so severe.
I believe the hand leading is good, it’s opened up a lot of communication, but I’m trying to teach him to point which is proving very hard! I know he can form a point as he points for himself (looking at things in books ect)

Please. Never say never. Always have hope. Even if he doesn't talk the traditional way (speech) there are other ways he can communicate effectively.

Would your DS likely talk? Most probably. Though I haven't got a crystal ball. There is some research that children who have Autism and learning difficult do find it extremely difficult to learn how to speak.

But anyway. Why go into the 'Why'? What you should be asking is "What can I do?", essentially it's what you put into him now that you would reap the rewards. He is grabbing you by the hand- which means he is communicating to you. However, this mode is atypical. You want to shape that pulling and get him to point, use a picture and:or vocalise.

Please get the Hanen More than Words Book and in the meantime ask your SLT to refer you to the more than words course. The course and book will teach you ways on how you can engineer your environment to optimise your child's speech and language skills, it also has a list of games and activities you can do with your child.

Look into PECS (although some services are phasing this out and are beginning to look into core words -Choice boards). Some parents put their children into specialist nurseries, part time, as they staff are much more knowledgeable in working with children who have special needs and have more access to services.

If you can and can afford, apply for DLA and get your child seen by a private SLT or some private clinics run communication groups for very young children who need help developing their communication skills.

@buildingbridge thanks for your reply. I’m so new to this, I never understood autism properly and didn’t know it was a possibility to never speak when being autistic. I spend my days constantly taking to him, repeating everything and labeling everything I give him and he leads me to. He doesn’t babble either. I have mental health issues myself, I’m bipolar and have a history of bad depression so this is a major hurdle for me. The main problem I have is teaching my son to do anything for himself. He knows how to clap because he can clap my hands, he knows how to feed himself but refuses to and makes me do it every time else it leads to a massive melt down. This is the reason I believe he doesn’t talk. As he doesn’t imitate.

The not knowing is so hard.

My story is a positive one. DS had no words at all at that age and would hand lead a lot. He ignored us and didn’t respond to his name, but would come and get us if he wanted something. He could also point from 18 months (though would not look at us when he did so or do the joint attention thing).

He could copy us doing “things” (eg he’d watch us using a toy and do the same). But he wouldn’t imitate “us” at all (no copying funny faces or sounds or actions). I spent an entire year trying to teach him the makaton for “more” with no success whatsoever. I did feel he understood some language, albeit delayed and only concrete stuff (eg at age 3.5 he had no conception of Christmas or presents).

Anyway, fast forward, at age 4 he underwent a development spurt and started to be interested in engaging with people for the first time. He imitated a sound for the very first time aged 4. He didn’t say his first word till age 5 and only after a year of intensive speech therapy (this only started properly after he went to school, the pre school service was awful). In addition to (or perhaps because of) the early lack of interest in social engagement it emerged he has severe verbal dyspraxia (problems forming the motor movements needed for speech) and has had to consciously learn how to make the movements.

He’s now nearly 7 and extremely chatty and way more sociable than his non-speech delayed older sibling. He’s doing well in school and thriving in mainstream classes for several subjects. His speech still is unclear, he can’t say certain sounds and finds speech very hard but we have intricate chats. And even before he could talk, once he started to engage it was amazing how much one could communicate with alternative communication (sign, mime, drawing).

One thing I found helpful in dark moments was to read some of the blogs written by non verbal teenagers and adults. Many of these are deeply moving and demonstrate that a person’s ability should not be judged by lack of speech.

Best wishes to you.

@lonesomeBiscuit thank you so much for that , made me quite emotional reading your story.
I think the worse thing for me is knowing the fact my little boy wants to communicate so badly , He tries super hard getting his needs met. I e also suspected verbal dyspraxia due to his lack of sounds.
I hope and pray everyday for even minimal words, just so I can hear his sweet voice.
He engages very well from singing, our days are full of nursery rhymes 😊

My son is 21 are largely non verbal. If he understood more I think he’d say more. He knows hundreds of labels and can get his point across on a very basic level. He has years of ABA therapy and they taught him how to choose things which has been a godsend.

I used to pray for speech , now it’s not important at all. I wish he understood more. He thinks if he types a word into google for something he wants I can produce it immediately. Usually it’s a vhs video that’s impossible to source! That’s when I get frustrated when he gets upset and angry that he can’t have something. He’s at the most amazing residential college now and gets lots of speech therapy, hours a week and he’s still improving every day. X

There’s a list of pre-verbal skills that children need to master which help with speech development and conversation. I’m sure you can find more information on this and it will give you some ideas to work on. These are all the sorts of things that SALTs do with young children.

childdevelopment.com.au/areas-of-concern/using-speech/talking-readiness-pre-language-skills/

This is such a lovely read,very hopeful x

This is giving me hope x

My son had limited words at that age but wasn't totally nonverbal. We do know of another family whose autistic son did not have any words whatsoever until the age of 5, and now at 8 years old he can hold conversations! So do not give up hope, your child is still very young. I would reach out to SALT specialists for further advice to help stimulate his verbal skills.

My boy is 16 and non verbal I don't think he's ever going to talk now.