Friend in denial over Autism diagnosis

[AppleCottageCores]

I have a friend whose child is completely non verbal at nearly 9. He was diagnosed at the age of 7.5 and it came as a massive shock to her- but not to those around her.

Now he has a social worker, is in Camhs and the Doctors want to precribe melatonin and ADHD meds but she doesnt engage. She has missed appointments and cries a lot. She has been offered counseling but doesnt go.

I feel really bad for her. Her husband is very supportive as well as her mum. But they wont advise. They reassure her as do I and her friends.

But a small part of me deep down thinks....all of us are saying to my friend: it must be so hard/ challenging and we are supporting her emotionally and with physical help but no one is thinking of the little boy who cant speak. Everyone is saying how hard it is for the mum, but its hard for the little boy too.

How can I help the mum...but also help the little lad too. He has awful tantrums, and is growing rapidly. I think he will be over 6ft.

Thanks for reading

Not all.parents of autistic children are autistic themselves I'm not
She could just be struggling having a child with such complex needs or she could be autistic and still.struggling having a a child with such comp!ex needs .

Supporting symbol based communication is speech therapy. All the research shows that the more access a child has to alternative communication (eg symbols, signing) the more likely they are to speak. Don’t worry, we don’t do all this silently, we talk as we point at symbols so they are hearing the words too.

For pre-verbal kids with autism generalisation and attention and listening are major barriers to developing communication skills. It’s therefore way way more important that adults around them are using appropriate strategies for short periods throughout the day in their normal environment. This is much more likely to make a difference for those kids than sitting in a room with a speech therapist.

I know I get that, but many parents I know have said that their kids aren’t given any therapy to try and get actual speech, alongside any AAc etc and your post didn’t mention it. So I just wondered whether speech therapy training for nonverbal kids was to routinely also offer real opportunities for speech?

Not every child can get speech but without therapy then there is no support for this possibility.

I don’t buy this. Specialised therapy to promote speech is important isn’t it? Not just hoping it will come when other methods are being used to use aac and symbols.

One parent I knew had great trouble finding a therapist as most speech therapists don’t have training. But she specifically also worked on building from any sounds that the child could make. She helped her child progress to saying a few words. He still uses aac primarily which is very useful but he wouldn’t be saying anything without that therapist. Might be worth looking this up.

PECs is controversial at the moment but lots of people say PECs when they are actual referring to the symbols themselves.

You can use the same (or different) symbols in a choice board.

I’m an experienced speech therapist who has worked with a huge number of of preverbal autistic kids, most of whom have gone on to start using words after being introduced to aac. Trust me when I say supporting symbols in the right way is the best way to promote speech, there’s a huge evidence base to support this.

Therapists who promote working on sounds or oromotor activiries for these types of kids are working on a very very shakey evidence based are far less likely to achieve functional communication than salts working with aac.

it’s also pretty sad to be in the mindset that speech is automatically a better skill than using symbols or aac when you say yourself the child is primarily an aac user. Functional communication is the most important thing here and there isn’t a heirachy where this is somehow better if it happens to be verbal communication.

Id suggest going away and looking up the communication pyramid and maybe even a few articles on aac yourself.

I can also guarantee all speech therapists have ‘training’. It’s a protected term which you can only use if you have a degree in speech and language therapy.

Being able to express and communicate all they are able to whether aac signs etc is crucial.

If the main mode of communication is aac then ability to say verbally "a few words" is not vital. Time is better spent boosting aac in some cases.

Some wheelchair users can walk a few steps. But having the right wheels to get around is crucial, for their day to day life, not relying on those few steps. The aac might be the wheels that give indepence to get from a to b. No matter how much physio you not going to get that person to walk 500m but they can wheel.it.