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

I agree with you the little boy may not be getting all the help he needs.
Just because he is non verbal doesn't mean he can't learn to communicate more, with help. Being able to communicate better may also help with his meltdowns since he would be able to make his needs known more easily

@FoxClocks thanks for your reply. Yes I agree. The special needs school are trying to get him to use pecs but my friend doesnt like pecs...does anyone know if there is something else she can use...buf it might be tricky if she uses say Makaton and the school usss pecs....

I think her husband needs to get more involved. Could your friend be depressed? Has she seen the GP herself?

The school.will.advise her to use what they think works best for her child for some its PECS, for others its Makaton / Signalong etc on the advice of SALT,just be there for her let her sound off .I'm the parent of of a,severeley,autistic, non verbal 13yeae old my best support is from.fellow parents of children with similar disabilities tbh.

1. what is the husband doing in all this
2. if the child is at a SEN school, how can this be a shock to her?

@FoxClocks @PosyPrettyToes My friend is the more dominant one in her relationship. Her dh takes their ds out a lot so she can have a break which is really good for her. It means shd can recharge.

@FoxClocks I think you may be right about depression. Im a bit hesistant to mention it as she snaps quite a bit at family and friends. Completely understandable because of the strain.

It takes time to come to terms with things although if he is non verbal she ought to have known he has significant issues. I would personally stay out of it. Pecs is useful and is the standard communication aid for children with asd. My dd who has some language uses her ipad to type words to supplement her speech. Maybe she just needs more time. It is a bit like grief tbh. I honestly felt traumatised by the whole diagnostic process. If her child is in an sen school he will be getting help. Being loved and accepted at home is the most important thing.

@PosyPrettyToes he has only just started at a SEN school. He was a mainstream before. He has an EHCP. She was very reluctant to move him.

@x2boys thank you for your message and i agree with you. She has no friends who have children with Autism. I hope when she gets more support from the social worker that her support network will grow. Her child goes to school by taxi service so she cant meet the school mums and dads.

@cansu thank you for your message.

My son has always gone to a special.they often have coffee mornings etc so.parents can meet each other her sons school.might have similar ?

When DS was diagnosed, a friend who also has SEN children said to me; he's exactly the same little boy you have always known and loved. Nothing has changed about him. All that is different is, he will now get the support he deserves. It was very comforting and very wise.

I wish DS had been offered melatonin. he never ever slept. He didn't sleep through the night until her was eight, and even then still fell asleep at midnight and woke, wide awake at 5am. he ate nothing. He was skeletal. It massively affected his growth and he didn't reach anything like his predicted adult height. Meanwhile i was so shattered I didn't think straight. She and her child are lucky to have proper medical support and advice. She needs to try it. Melatonin is pretty harmless. It's an over the counter med in many countries, used for jet lag. He may feel calmer if he's less hyped up.

Special.school*

This is what is so messed up with the system, if the parent doesn’t engage, services are weak. Really that boy should be having multi disciplinary team monthly meetings and coordinated speech, OT and play therapy, horse riding and whatever else suits him.

instead it’s just of the school are any good. Although all week they should have speech therapy using whatever works.

In your dreams
If socisl.services are involved some times they have meetings six weekly often the only MDT team is,the annual.EHCP meeting
As for horse riding and play therapy that's a,lovely idea but it doesn't happen in many special.schools.

I also have problems with PECS. My non-verbal, autistic 11 year old uses a high tech communication app on an ipad.

However, if your friend wants something better than PECS, for example, she needs to build up her strength. In my experience, most professionals assume incompetence for children at this end of the spectrum, and support for absolutely anything other than keeping them quiet and contained is a long drawn out fight.

I researched it the high tech AAC, bought it, formatted it, taught him to use it, recorded evidence of him using it, put together a report (SaL is not my area) and applied directly to the NHS's Electronic Assistive Technology Service to request that they meet their responsibilities to provide and support it going forward. Eventually, after a year of back and forth, they agreed to take it on.

All quality care is like this.

She won't get anywhere while she's crying at home. She needs to be a fucking machine if she wants better for her child.

Speech therapist here. She’s right to be reluctant to use pecs, it’s really not seen as best practise anymore as it is aba based and limited to requesting.

Makaton is also unlikely to be the answer. It will
support understanding but if he’s autistic, and therefore has difficulties with gesture and body language, he’s unlikely to sign back in a meaningful way. Her Signing to help his understanding is certainly a good thing though.

The beat path to go down would probably be core boards. This is something you could help your friend out with by printing off some free ones from on line. For example the super core low tech learner grids on the smartbox website. Having a go with one of these in a fun activity such as blowing bubbles would be a great place to start.

That would build the foundation skills And prove his capability for working towards a high tech device as the poster above has suggested.

https://thinksmartbox.com/news/low-tech-super-core-resources/ bubbles or balloons board are always a fun place to start. Lots of pauses and an adult using the board to model a functional word like ‘more’. It may take a quite a few attempts at modelling first but my experience is the big majority of pre verbal autistic kids are very capable of accessing core vocabulary of adults around them are consistent.

I agree in my dreams.

But I would definitely pay my tax for this level of quality service for disabled kids. I am just cross it’s not happening.

As a society we should be judged by how well we look after the most vulnerable.

It should not be down to parents alone. That’s not okay.

But surely it’s also important to have actual speech therapy to encourage speech? Many kids could learn speech with the right therapy given as early as possible.

You sound awesome, good for you. It’s a shame you have to do this but how great that you found that strength.

This /

My non verbal ds speaks thru aac ipad app because of pushing for it
Dont like pecs? Well yeh pecs wasnt the whole key for my ds it was dynamic aac which did it ( he speaks with aac at his levelsnd sciots but it is his voice)
But pecs is a starting point "dont like it" is the wrong attitude...
Sadly if dad and family are all pandering to the mum it might take a while... get mum into therapy. Hope the school push aac .

It doesn't stop speech many children with autism will gain speech ,but some never will the aim is to get children to communicate in any meaningful way not to stop.speech.

Her dh takes their ds out a lot so she can have a break which is really good for her. It means shd can recharge.

Is your friend neurodiverse I wonder? As the condition runs in families, a child's diagnosis sometimes leads to parents and grandparents asking questions about their own situations.

But surely it’s also important to have actual speech therapy to encourage speech?

No... speech therapy is sbout communication by whatever means. For some that is aac.
Wasted time with "speech therapists" who wanted to only focus on verbal speech. Needed one who said right lets do pecs let s do aac this is how .
A non verbal nine yr old has more chance if aac is pushed. Get him typing pointing using ipad speech app. Start with pecs , use a few makaton signs.