How did your child with suspected autism turn out?

[Rose213]

Sorry for the blunt question. We are really going through it at the moment.

My daughter hasn't really met any of her milestones. She is 2 and a half years old and non verbal. She has never said a single word and does not recognise her name.

My daughter doesn't really play with toys but will spend all day lining them up. This has now progressed to lining up her food and literally anything else she can get her hands on. She spins around in circles a lot as well, makes limited eye contact and other things you may expect like waving etc she has never done. On her 27 month developmental review they compared her communication skills to a ten month old. We are currently awaiting speech and language therapy and an official assessment/diagnosis of autism from specialists.

Just to add we are also doing everything we can within reason. My Daughter goes to nursery every week to try and improve her social interaction, we engage as much as we possibly can with playing and communication, we take her out lots to soft play, parks, children's classes, holidays etc and she has regular time with her grandparents.

However I was hoping to maybe hear from some others who have gone through similar? Did things ever improve and your child caught up? If not how did it turn out for you? The uncertainty is so hard to deal with.

Sorry for the long post. It's just a scary time at the moment. We love our daughter so much and always will regardless of how things turn out, I just worry for her future.

Thanks.

My son was referred at 2 years old due to being non verbal, lack of gestures and no language understanding or response to his name. He's gone to nursery for 2 years and everyone was adamant that would improve things but it didn't in the way health visitors implied it would (I don't bother with them now).
He's 4.5 now and non verbal, he uses a lot of eye contact purposefully with adults if he wants something, hand leads you to get what he wants and he responds to his name well now. He doesn't play with other children at all however he will allow them happily to play next to him, but he went from no interaction at all to enjoying it with adults.
He wasn't given a GDD diagnosis with his autism one but other professionals have implied we should ask his Sen school after he's settled there to re-refer for a learning disability assessment as it seems he could have a moderate one at least (developmentally he's gone from 0-6 month scores at 2 years old in communication and social development to 9-12 months at 4 years old but his motor skills aren't that delayed, and SLTs have said he may never have enough speech to have a conversation with us at this point).
However I have spoken to people who had children non verbal at 2 and between 3-5 suddenly get to quite sentence level so it's a tricky one to be predicting until they re 3/4 years old although some would argue older.

Have they been referred to the specialist teachers or portage service by nursery?
Speech and language UK is a charity that gives great advice for free and I would also look UK intensive interaction as that helped us a lot.
Also have you applied to DLA as they should definitely be eligible at this point?

Thanks for sharing. I do wish you and your little one all the best. It's very difficult to come to terms with, isnt it? and it's only really just sinking in the struggles my daughter may face ahead of her. I hope you have been coping as well as you can with it all as well.

nursery havent referred her to specialist teachers but they are great with her and she really enjoys going to be fair. We will look to see what further support we can get when she goes back to nursery in September and what further steps we can taking after she's had further assessments and speech therapy. we are in the process of applying for dla now which should be a massive help.

The best advice I could say with coping with things is just to focus on the next problem to solve, thinking ahead in the future when my son was 2 was honestly breaking me it was only when I consciously worked on only thing a year ahead max that things go any easier.
It might just be that the specialist teachers don't accept referrals until children are 3 so nursery won't have tried yet, it seems to vary between 2-3 years old in different places.

My little sister was the same at 2.

It’s generally a positive story in that she now functions well in society. Has a job, bought her own flat, has friends and good relationships. Obv her autism affects her in many complex ways. Overall she is happy and settled.

She is honestly one of my best friends and I love spending time with her.

I was reluctant to say this when I saw your post because the outcome can be very different. All the best to you at this worrying time xxx

My son was very similar at that age. He’s nearly 16 now.

His GDD diagnosis quickly turned into autism and later severe learning difficulties. He had no speech, no pointing, no waving, didn’t respond to his name, and had no eye contact. He would spin, jump and stim a lot. He didn't play with toys at all and would line things up to the extent it would upset him.

Everything has been really delayed. He didn’t start responding to instructions until around 6. He started pointing at 12 and has never waved. These days his eye contact is really good. He stims a lot less now, and when he does it actually helps us understand how he’s feeling, so it’s useful for him and us. He doesn’t spin anymore and he doesn’t jump on everything like he used to. He randomly started playing with toys around 11 and now absolutely loves them.

He learned to use a communication aid, which made a huge difference for his language development. He was completely non-verbal until 8, then had just a handful of words by 12. Over the last few years he’s developed much more speech. In the grand scheme he still got less than a toddler but too us it's huge. It’s still very delayed and people often struggle to understand him (that's another story!), but at home he can get his needs across by using speech alongside his communication aid.

My advice would be to introduce any form of communication as early as possible. Eventually the frustration kicks in, and that was definitely the hardest stage for us.

DS was referred at 2 year old by his allergy consultant of all people, because he just lined up all her equipment, would not make eye contact, didn't respond to his name and the very very limited number of words he had, and I mean limited, maybe 2 or 3, he just stopped using them.

He was diagnosed by 3 years old.

He didn't play with toys rather that he investigated how things worked by disassembling them or played with cause and effect by being destructive. It looked like typical naughty child behaviour but to him he was learning that if he does this, then something will happen and sometimes those things can be fixed and sometimes they can't. It was a hard adjustment accepting he needed things to throw and destroy and there would be a never ending cycle of picking toys up and putting them back together, but it was necessary for his development.

He went to nursery, they all observed his struggles. It really felt like we would have a permanently non-verbal child at that point. He would not engage with anything at all.

He didn't respond to pecs symbols and had no interest in low or high tech AAC.

He had 3 rounds with speech and language, who at the time did not understand or weren't trained to support gestalt language processors so would support in a very neurotypical oriented way.

My son would rewind videos or insist we watch the same programmes on repeat, and that's when I did my own research into gestalt language processing and how to support it, by his third bout of SALT they'd received statutory updated training on GLP so it finally felt like we were all singing from the same hymn sheet.

He was not toilet trained before starting school and I feel like I didn't get the right support from nursery to support an EHCP application, however when he started mainstream, although it was apparent they weren't the right setting they've been fantastic about supporting us to get an EHCP and specialist provision, as well as supportive therapies for various areas of development like maintaining attention and taking turns. Life skills that don't come as naturally to him as it has others.

He started talking within 6 months of starting mainstream, and he is still catching up with his language now at 6 but most of his needs he is able to communicate verbally even if we're not having conversations just yet. He understands everything that is being said to him and around him and he is always soaking things up and every week he comes up with something new. Like his first time asking a question for curiosities sake, or his first time calling me a funny name. All the firsts that most parents take for granted.

It has taken a lot of hard work and self research to get to this point because the public knowledge within the health service just hadn't caught up when we needed it.

He is 6 now and he is awaiting a named specialist provision on his EHCP, but he is so capable, but he is just so different too and easily misunderstood.

For example if you ask him if he wants something and he just walks off, it usually means yes I want that im going to sit down so you can bring it to me, but it's easy to see his walking away as disinterest unless you know what his non-verbal communication looks like specifically.

He still leads by the hand for things he wants when hes had a long day of interacting with the world.

Sometimes he will just say juice, or milk, and not "I want", and offering him choices is just too much and he will have a verbal shutdown and you won't get any interaction from him.

He's still not toilet trained fully, we've just about got weeing but he can't always tell us when he needs to go. We haven't got pooing down yet at all.

So yes, life is still difficult for us, but it's no where near the life I thought we'd be living.

He's made no academic progress at school but he's entirely capable he just isn't being given opportunities that meet his way of learning just yet, so we are hopeful that specialist can help us. He's resitting reception for a third year until specialist is named.

However he turns out, our life is richer for having him in it, even though it is incredibly hard work. He doesn't sleep, he elopes in some quite frightening situations, he still needs a pushchair for his safety, he can't tell me how his day has been, or if his tummy hurts or if his head hurts, but I think as your child grows you just grow with them and learn life in their own language.

He's going through a stage right now where he assigns numbers to things, even if they don't have numbers, and we have to remember that number 12 is French fries or number 50 is his kindle, or number 3 is Peppa Pig.

I agree with the PP above who said introduce as much AAC as you can, as early as you can. You can get some low tech AAC on amazon as a pre recorded push button system with symbols, and carry it everywhere. Model how it is should be used, use it when you need the toilet, need food, need a drink, need quiet etc.

I also think that with autistic children, TV can help a lot, especially if they're gestalt language processors. I can not recommend Yakka Dee and the twirlywoos enough for the repetition and use of language being modelled appropriately. They definitely helped us a lot with naming items and verbs.