Non verbal ASD/ADHD

[SENSummer]

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DS is 5 and diagnosed with ASD & ADHD. He was non verbal until a few months ago (around his 5th birthday). Odd words and phrases over the years but nothing consistent. Now his language is exploding and we have about 30-40 words. Pronunciation isn’t great but identifiable. He’s a huge handful and in a specialist school because he is just so chaotic destructive, we are in the process of medicating for AdHD. It feels like he’s switched on a bit more over the past few months and can now follow basic instructions and do quite a bit for himself but he’s still just SUCH HARD WORK!

We are really struggling with the concept that this will never be a good. That we will forever be living in a destroyed house with giant gates everywhere and his younger sister suffering. That we will always be living inside the prison of him because that’s generally what it feels like. I can’t stress how hard work he is. (We have all the support functions in place and social services are currently trying to up his support package significantly)

Has anyone had this situation and it’s ended well? I don’t want him to not be autistic/adhd I just want some semblance of enjoyable family life that isn’t this total shit show! I feel like we are waiting for things to get better as he gets older and I’m just not sure if we are being delusional. I see all these ‘my child was non verbal ASD until 5 and he just passed his driving test last week’ kind of posts on social media and I just don’t know if those are true.

*by ‘get better’ I mean ‘could he actually be driving himself around in traffic one day instead of trying to run head first into it?’

I'm in the same situation with my three year old no advise just solidarity that your not alone! I always wonder if her needs will be this high forever the thought of that fills me with dread because I don't know if I can be like this forever! Everyone says it gets easier with age but noone actually knows if it will or not. X

It sounds like your dc is making good progress in terms of his expressive and receptive language. The more he understands the more likely he will be to understand expectations, social norms etc and his behaviour may improve. He’s still very young so anything is possible.

Um sorry no. My 15yr old is still non verbal and functions as a young toddler

My 9yo has just gained half a dozen words this year but that is it. I’m sorry to say we still very much have the issues with destruction etc and still use reins. It’s tough - solidarity OP.

How long has been taking meds?

That must be so hard I worry that’s where we are heading too tbh.

We are still in titration, about to move from mephanphenalate to Elvanse

Our 8 year old still has very limited communication. The words he does know he invariably shouts. He isn’t toilet trained, has humongous meltdowns that can be quite violent, and screams at us for leaving the room.

He also spent 4hrs somewhere he’d never been before on Sunday, has learned the word rollercoaster, and yesterday counted back from 35. We take our wins where we can find them.

That’s amazing! Those are the stories I hear and think I wonder if he ever will do stuff like that.

He’s toilet trained actually (still in pull ups for safety on long car journeys) but I was very surprised as I really didn’t think that would ever happen.

My ds is autistic diagnosed at 3. He’s in mainstream but has full time 1:1 support. He was so hard until around 4/5 then he did get a bit easier. His vocab improved and he toilet trained.
We find a set routine helps so we get up , dress, eat etc at the same times every day. We tend to do the same activities and have lots of prep to introduce new activities. He has a daily planner in his wall and we use lots of visuals. We use calming tools, distraction and forward thinking to manage his emotions.
we have no idea what the future holds but it’s likely he will not be independent.

It is not getting better for me no and it has been a fight to get what we have in place so far. You are lucky to get the meds though as that is a battle I'm having right now. Meltdowns used to be terrible, but that has been replaced with other challenging behaviour and for me I feel it has been a steady decline over the years.

My child is lovely in his own destructive way though, but I'm under no illusions it will get better. I'm dreading the teenage years and potentially sexually inappropriate behaviour and meltdowns. I'm already getting bruises from him as a preschooler.

Some things do change a lot for children in this position. I try to keep it at the back of my mind, but be realistic if you know what I mean.

Intensive interactionis meant to help a lot and might be worth a try.

3 families I’m familiar with planned and had their children go into various forms of care at 18. One was able to live comfortably in an assisted living facility, the other two went into group homes. The parents remained involved but on a different level.

Yes DC was non verbal at 4/5 and she's just passed her A levels, unconditional offer at her first choice uni and a boyfriend. Never thought we would get here but we did.

God that’s my dream! I can’t tell you how much I hope we get there! Would you mind sharing a bit about your journey? Was she destructive/behaviourally challenging at a young age also? Did her language come slowly or was she a ‘and then one day we just couldn’t shut her up’?

She didn't meet milestones. Wasn't toilet trained by school. Never slept tbh. Very challenging. My long marriage broke down.

Language came on overnight. From nothing to full sentences. Head paediatrician said sometimes it takes longer for the language part of the brain to develop. She had a very spikey profile and didn't fit the usual autistic characteristics. She was finally diagnosed formally age 10 with DLD (plus adhd, dyspraxia). DLD is woefully underdiagnosed and I'm convinced a lot of kids have been misdiagnosed as ASD when DLD is more common ( maybe 3 kids per class).

She still has struggles obviously and needs support but she's blossomed and I have no doubt she'll be successful in whatever career she chooses as the resilience they develop from fighting to keep up with their peers stands them in good stead.

If you told me 15 years ago we would be here I would never have believed it. Don't lose hope x