Non verbal son

[GreenDuck26]

I have a 3 year old son and he is completely non verbal. I would just like some advice and to see if there is anyone else who feels the same as I do, totally helpless. I have worked in education for years and I can see my son has strong autistic traits. Thanks in advance for any help.

[LDAutie]

Hi GreenDuck, I have non verbal classic autism and mild learning disability,epilepsy memory damage caused by epilepsy, a physical disability caused by over restraint etc.

While it may be a big shock to you as he is your child,you will in time notice being non verbal autistic is not the big issue as it used to be-your son is in the right era as there is so much technology and AAC software out there available (at a price of course sadly), they used to fund large clunky devices for me and others labelled with severe speech impairment, but the goverment took that away a good few years ago.

my mum went through the same as you in the eighties.

she told me a few years ago back then she felt she had lost a child back then as she had wanted me to be like my sister.

But she eventually processed that thinking,realised I was never that child to begin with,and became my best friend in a way.

there was no obvious support for non verbal autism and learning disability other than being placed into kids homes back then which my mum and dad considered as they were unable to cope and had no support from anyone but the neighbours (back in the day when neighbours used to know each other and like each other).

Everyone has their opinion but I use Proloquo2go as it was assessed as what I need by my SLT,can be adapted to fit most abilities and ages, any vocab etc,but it costs a lot-even more so if you got to buy an iPad as well,there’s no demo and there are cheaper android alternatives like cough drop, which I personally find harder to use,and I am not a fan of android.

I am slowly writing a book on my experiences growing up but there is a non verbal autistic man (with no learning disability) who was once labelled with (low functioning profound autism),he now writes books,poetry etc,and goes to some conferences, he speaks using text AAC but can get overloaded fairly easily.

if you google ‘Tito autism’ you will find him,I might be a long time fan but I have never been able to spell his middle or surname.

Another person of note,who was Also classic autistic and non verbal up to 9 (I think) is Steven Wiltshire, an amazing artist.

Best wishes.

[GreenDuck26 in reply to LDAutie]

Thank you so much for this message. It really makes me feel like I am not alone and neither is my son. I hold out hope that there is chance that he may develop his speech as he is still fairly young. I will have a look at some of the technology you suggested, thank you.

Bestest and kindest of wishes to you.

[HolisticMum in reply to GreenDuck26]

I have 2 non verbal sons, aged 29 and 22. The younger is very much the boss and knows what he wants. He has always liked technology from a young age. Starting with cause and effect toys. Something that gives him something like speaks the words to him. He loves words and always liked spelling. We fought when he was at Primary School to get the S&LT to believe an iPad would be the best way forward to express himself. His TAs saw it and the SenCo but not the Speech Therapist. Who said we would have to agree to disagree, which was absolutely no help to him. A complaint and a new S&LT helped pave the way. A trial of certain machines with big buttons were OK but limiting. Starting mainstream secondary school the S&LT then recommended that he have an iPad with the Proloquo2 programme. He loved it, made people understand him more. So we are thankful that he got it.

I think he's on his 3rd one now, so Speech Therapy got the first one, we bought the second and a charity funded him to have his latest one from about 17yrs old. You can back up everything which is really handy because we don't want to lose all the words and sentences he has on there to help him speak.

When he was at school it was really helpful for the TA to take a picture of him working or playing etc so that we could talk about his day when he got home. Invaluable info to me.

But as he is only 3years old at the moment, if you get the right help, I am sure he could get some speech (hopefully). But read up all you can on speech training, training the brain and exercises you can do. I never stop hoping and exercise is so helpful to the brain I have seen that but it has to be constant. When my husband was at work, I had 2 boys with special needs to look after and take to school etc and it was hard for me to do the exercises I wanted. If I'd have had a little army of helpers then, as some people I knew did, we may have been further forward.

On a personal note, what has helped my boys is music and singing to them and the sounds. A therapy we once did said to say words like a whisper in their ear, 3 times and then see if there is any verbal response. Even if it doesn't sound as it should, just praise every little sound. If he makes a sound, copy it, mine really liked that too. Say words on the palm of their hand to get the vibration too. Hope this can be of help in some way. I still have the passion to help my boys and will never give up.

Good luck. Kim

[Hidden]

PEC - picture exchange communication system to give choices - picture or photo to help your child communicate and is best tool for nonverbal - you can buy from amazon and visual timetables

[GreenDuck26 in reply to Hidden]

Thank you for your advice, I will check that out now

[BenjiB]

My son is 21 with severe autism, severe learning disabilities and epilepsy. I felt the same as you when he was little. I assumed one day speech would come but it never did. He can say lots of single words so can get his point across. As the years have passed speech has become less important to us, we work really hard with his understanding which is very limited . My son was diagnosed at 3 and it’s been years of hard work I won’t lie.

Ultimately he doesn’t understand he has autism or is different to others and he’s happy mostly and really enjoys life.

The early years are really hard. People are often confused when I say he has autism as lots of people see autism like they see on TV with various celebrities.

Has he been assessed for autism?

[HB_Mencap Researcher]

Good morning GreenDuck,

There are a couple of organisations that might be able to support with how you are feeling at the moment. If you'd like to give them a try, here are the links to their websites:

Kids Speak: kidsspeak.info/

NAS Online Community: autism.org.uk/directory/n/n...

Scope: scope.org.uk/family-service...

Best wishes,

Harriet

[helpenquiry]

hi, this may not help you for your current situation but local police forces run something called a Pegasus card. it is something that you and your son carry - it is free - it lists all the issues of communication that your child/yourself might have. So in any situation where the police are involved they will know the best way to communicate. sounds stupid but if you were in an accident, or a witness to a crime or incapacitated whilst with your child - the police will know how to help him.

Also local libraries have a specialist section for books, storysacks, etc for the development of language for children with additional needs. might help make the tough stuff fun. Good luck and I know you will benefit from any and all advice on this forum