To lose hope- Non verbal ASD

[Thehonestbadger]

My DS recently turned 4. He has non verbal ASD and raging PICA.
He did start speaking (single words) but then regressed around 16 months and stopped. We get odd words now and always in context but it’s rare, maybe 3 or 4 per week.

He’s not potty trained
can’t follow even basic instructions
shows little understanding of what’s being said to him.
has very inappropriate behaviour socially (licking and climbing strangers…etc)
attention span is fleeting
very hard to engage
climbs furniture relentlessly
throws food all over the place

I keep being told by everyone that he may well make massive development leaps and I just need to wait it out as though it’s a given that he’ll progress loads. I feel like the worst mum but honestly I’ve just lost hope. Hes made very little progress in the last 2 years and I just can’t imagine him suddenly jumping forward and talking/functioning even semi independently. The concept of him being able to do even basic stuff feels ludicrous.

Please share your personal experiences with ASD kids.
We love him but his extremely high needs and difficulties are completely ruining ours and his siblings lives

I’ve seen a few of your threads and while I have no experience my heart goes out to you. Never feel guilty for how you feel. You matter as well. I hope somebody with experience can provide some encouraging words 💐

I'm so sorry. Has he got an ehcp lined up? Have you got support from council? Look into respite care as he gets older. Special school will usually help a lot.

Your son sounds like mine. Mine is still non verbal and not toilet trained but is an absolute delight on the whole. He's 5 and is a totally different child to who he was at 3. A little boy in his class used to just scream (couldn't speak) and has just started talking aged 5.5! I would say (if you're not already) still continue doing normal things. I stopped taking my son to the supermarket as he was a nightmare. An absolute horror show but then i realised, this is life and i need to help him adapt. He's amazing and will happily put things in the trolley and pack etc.

It is very very hard though and I know how you feel. My family has no support so we never have a break. I hope you get some rest?

Why is he ruining your life?

my son is 11, non verbal and still not toilet trained. He sounds like your son but I’d never say he’s ruining my life.

Yes he’s hard work but he’s also full of so much joy and happiness. No my life isn’t how I thought it would be and yes it’s harder but that’s life. If he’s got a smile on his face then I’m happy.

I work with autistic kids and they so often surprise me with the progress they make. Multiple I’ve worked with 3, 4 and 5 year olds who I’m convinced aren’t going to speak but end up surprising me by 7 or 8. Progress with autism is never linear and often seems to come in waves.

Its really hard now but please don’t loose hope of things improving. He’s honestly got so much time.

Hey , my son was a nightmare at 4, he was saying a few words , couldn't communicate, wouldn't listen , would have meltdowns over everything, wasn't potty trained , he started school last September made a massive difference, now he talks and his behaviour is a lot better I get shocked sometimes. Please don't lose hope. I remember my life before that and I am so grateful to the school.

Read some of her threads. I remember one or two and by all accounts OP’s life is absolutely exhausting and relentless (hope you don’t mind me saying that OP)

My daughter (nearly 5) is non verbal and has global developmental delays. This time last year, her understanding was extremely limited, couldn't follow simple instruction etc. I was in a mess, thinking I was a failure as a mother and I had let her down. However, in the past few months she has come on so much, her understanding is fantastic, she can follow instruction, interacts with her peers and has started using some simple Manaton signing. I know it might not feel like it now, but you are doing an amazing job, and he is very lucky to have you ❤️ for a child with additional needs, every little thing means so much, so hold on to every single little progression he makes, they mean the world 🥰 sending you so much love and strength, you got this mama ❤️

This sounds very tough all round. Our friends non verbal ASD son suddenly came out with a whole sentence one day.

He's doing much much better now he's older, but it was super hard when he was your sons age and younger. Sending 💖

Op didn't say her son was ruining her life, she said I'm his needs were.....she was just being honest and there is nothing wrong with that. It sounds incredibly difficult and she needs support, nothing wrong with saying it how it is and looking into how best to move forwards....

I have worked in Special school for 20 years and my youngest son has autism.
At 4 he had a few words, and was very delayed. He also has pica. He's 27 today :) still has pica (and we've just had to have his front teeth expensively repaired as they were very damaged by all the wood, plastic, metal he's eaten over the years) ...but he's also upstairs reading Percy Jackson stories as I type!

My current class ..all aged 5-6. One has come out of nappies this term, two more who were non verbal in September have emerging language..just a couple of words, but it's coming. And it will continue.

You really really can't predict.. some of the children I have worked with I would have assumed they would always be incredibly challenging and non verbal. In fact that rarely is the case... they DO develop, and change, (and find ways to communicate if speech doesn't happen) Do not give up hope!

If someone had told me, when my son was 4, lining up crayons and watching the washing machine go round for hours on end, that he would be able to read, talk to me, shower and dress himself , I'd have probably laughed hysterically and sobbed. Those early years were hard.

Do not give up hope. He will develop, and also as time goes by, the grief you are feeling for what should have been gives way to a sort of acceptance (never totally, I won't lie, but it does get easier).

It won't ruin his siblings lives.

My DS sounds very like yours. He is 7 now. Still non-verbal for the most part but we are getting use of his few words more reliably. He’s still not continent but is starting to have some awareness of toiletting. His pica is really greatly improved - he’s for the most part really doing great at following the instruction “not in your mouth”. The biggest difference is that he is really coming on leaps and bounds in his understanding and following instructions. We no longer need reins and a death grip on his hand every time we leave the house. We no longer need to hover right behind him at playgrounds. Progress is small and it’s non-linear but it is happening!

Dont lose hope. He was speaking before. My ASD son not speaking a single words until he is 5 and then boom now he is 8 and speaking normally. Sometimes hard to stop.

Agree ❤️ all the best OP.

OP, please don’t lose hope.

I’ve been where you are now and it’s bloody tough.

My son is nearly 10 now, nearly toilet trained (that was a long and winding road) and speaks single words. Sometimes he blurts out a short sentence.

I’d recommend looking up Bill Nason. He specialises in autism and his books give a lot of explanation how the autism “works” so to speak.

Happy to pm you.

Saw a programme a while ago that focussed a bit on a single mum who had two children, one very disabled. None verbal, no independent movement etc. Dad couldn't cope and had gone.
I thought about those lives-whole focus on the disabled child with very high needs. Got to have an impact on everyone? Meals, everyday life, schools, holidays. How can you even walk your child to school when you are looking after another with such high needs.
You can love them to the end of time and they love you. Bound to have to reshape your life though.

Hiya, I didn't want to read and run. I am a teacher of children with complex ASD. I've seen numerous children, who sound just like your son, gain so many skills relating to communication and independence once they begin school. I really hope you'll find the right school for him and they'll support him and your whole family. Have you looked for local SEND groups in your area. Parents with older children who have 'been there done that' will be a wealth of support.
Skills will come with the right approaches for your son. Maybe not at the same pace as other children but they will. Things will get easier.
Unfortunately in my experience, parents of children with additional needs to shout from the roof tops to get extra support so keep shouting for what you and your family need.
Health visitors, GP, nursery staff, local authorities. Don't give up hope.

Op I get it. Even though you didn’t say it, I will, there’s times I’ve thought all sorts about my
son. And yes that includes that he’s ruining my life. Ofcourse I love him to death, but when he’s punching me and destroying my house and hurting himself, yes I’ve felt an awful lot of negative thoughts towards him.

my son was non verbal until 4 and then randomly started speaking one day. He has extemely Violent meltdowns, is very socially unaware, has tics he cannot control, cannot cross the road etc (he’s 9 now). He still cannot read or write and at school he’s the level of a nursery child.
BUT! He now talks, he knows how to use an iPad, the meltdowns are less frequent and about 2 weeks ago he started using the toilet independently! A massive achievement for him. He’s funny, popular (think because he’s a bit of a class clown 😂) and loves sport.

the way I coped with it all was lowering my expectations massively. And took every tiny small achievement as a monumental one!

you got this. Even when you are at your lowest, remember you can do this.

Nobody can predict what the future may hold, he will develop in his own way whatever that may be.

what support do you both have in terms of school and SALT/OT etc? That can make a big difference in the long run (but obviously only within his abilities)

don’t be afraid to shout from the rooftops for help.

My cousin was very similar at your DS's age. Then suddenly started talking at 7. He still struggles a lot but he can communicate now which makes things easier.

Another cousin never really started talking but he has an iPad with a word board on it and is able to press buttons on it to talk and ask for things. While he won't speak himself he fully understands everything you say to him.

It's really tough OP but with kids with ASD things can suddenly leap forward sometimes quite out of the blue. If he's using words in context then language is there and at 4 there's still plenty of time for him to progress to sentences. Definitely keep talking to him as much as possible because he'll be a little sponge soaking it all up even if it's not obvious.

The other thing I'd suggest if possible is to go along with anything it's clear he likes - so if he loves climbing furniture then take him to the park, if this needs to be when no one else is there to start with then go early in the morning or at a time you know is quiet. If you have a soft play that has autism friendly days then try taking him there. At 2 when we were exhausted from our non sleeping LO with ASD we'd go to this little soft play creche place and just lie on the soft play knowing he could safely play without us having to worry and he loved it. Climbing seems to be a big one for your ds though so I would definitely try to find ways for him to do that safely.

Does he like throwing stuff or does he like the texture of food? I was just suggesting to someone yesterday a sand pit filled with jelly. A ball pit with lots of balls to throw around might go down well. Anything you notice that he likes pick up on it and run with it, if there's a tv show he loves then let him watch it because he will learn the most from the things he's really into. Also join him in the things he loves doing - maybe not licking strangers! But if he loves lying on the floor watching the washing machine then lie with him and watch and maybe describe what you can see. Engage with him on his terms rather than trying to get him to engage on your terms.

Has he got an OT? A good one can be worth their weight in gold. Is he at nursery? Has he seen a SALT? Get as much help as you can (not easy I know). Good luck OP, don't give up, any hard work you put in will be worth it!

I think ds was most difficult aged 4 to 6, he started speaking more at seven so I'd say having odd words used in context is a positive. I stripped the house of anything non essential, he climbed door frames and would swing from the top. He was later incredibly good and fast on indoor climbing walls. Anything non essential I moved out into the garage, we lived with bare basics for a couple of years but it was much less stressful than trying to limit what he could do. It will get better, you will learn how to adapt and your son will gain skills, it's just a case of being patient in the meantime. Son is an adult now and pretty delightful, doesn't speak a lot but texts or emails in preference he's pretty much unrecogniseable from who he was at four.

Eldest DS (typical Kanners and tbh the spitting spawn from hell who bit everyone and thing) did not have any words, social grasp nor anything. he did not regress as he never progressed. It was not until the root was found to a severe communication disorder. that goes far deeper than issues with speech or language. he was living in a world he could not comprehend nor communicate with. At four he had a place at an ASD special school. The school used TEAACH. It worked for him.

His communication was so severely affected we stopped talking to him and switched to enhanced none verbal communication….think like a silent version of the peekaboo game for babies. We used a form of photograph ‘pecs’ as he could not make sense of symbols or signing. he had intensive speech therapy targeting the core basics of communication that others self learn as tiny babies. TBH I did not think he would ever communicate let alone speak.
Progress seemed bleak and minimal. By 7 he started to use echolia by 8 some of that was used appropriately. By 9 he was starting to read simple text books and make his needs known. By 10 you could NOT shut him up. Yes he needed speech therapy and special schooling including a special residential college but he is now an adult and has achieved far more than we ever imagined could be possible. He now lives in his own flat and continues to add to his life skills in a support towards independence set up.

From experience the earlier a child with significant impacting form of autism gets extra support and help the greater chance you give them. Not all will be able to make full use of that but it still helps.

That's how she's feeling at the moment.

The period when DS was having multiple violent meltdowns a day, attacking me physically, when we had passers by calling the police, when I had multiple visits to A&E and my one arm, shoulder and back was just one huge bruise, when he was waking every two hours in the night and needed me to go settle him again each time - much as I adore my son it certainly felt like my life was being ruined then.

Thanks for this thread. I know this is from June but have just picked this up. My son is identical to yours OP.

I was thinking of starting my own later about being SICK of people around me being in denial and trying to give me hope. Everyone knows someone who started talking later, but when you have a son that eats rocks, runs into traffic, draws attention to you (not that it is an issue) by screaming and hand flapping in public and sees meal times as an art lesson (rather than a meal time) it just feels they don't get what you're dealing with. I will drop in later when I have more time as hopefully the OP can pick this up. Its isolating and would be good to have a joint moan 😀 Oh and all of the support groups are during work hours, which is oh so helpful when you work.🙄