To ask, if you have an ASD child?

[Thehonestbadger]

When did they start talking?

I have a 3.5yo who is non verbal and doesn’t understand very much said to him. Doesn’t follow even simple instructions, straight over his head. He has PICA too so you can’t even blink or he’s eaten the Washing up sponge or rocks from the garden…etc. Can’t dress/care for himself in any way except feeding himself. Just started to use cutlery.

Good eye contact, pretty good around other kids as been at nursery for a while now but lots of shrieking and frustration over lack of communication. He’s pretty capable at things he wants to be; like jigsaws and procuring snacks.

We have started viewing special schools for him but no one and I mean no one (not a single one of the many professionals who have trotted through our lives) will give us any idea of what we can expect development wise. I know they don’t know but Omg just a ‘the majority’ or ‘some kids like him…’ would be so helpful to us mentally.

Im almost certainly deeply depressed right now. All I can see if still having to pin him down to change his nappies at 5, still having to drag him down off tables when we take him out at 10 and still having to have all the cupboards and fridge locked like a prison when he’s 15!

If he stays like this we will never be able to live any sort of family life I want to be a part of. He has a sibling who is NT and I feel so sorry for her as we are always so limited by him: it’s really shit tbh.

That all sounds really tough OP. We had a late talker here and who took off at 4.
I suppose professionals don’t really know who will make big leaps in development and who won’t.

I will say it’s okay to grief for the life you thought you were going to have, it doesn’t mean you don’t love him.

Hi OP. Just want to say i totally understand that desperation to have some idea of what the future might be but as you probably know you can't really get a clear cut answer on this unfortunately. However my situation is DS started using some words very limited to his interests at 2.5. He has lots of words now (4) but uses lots of echolialia and delayed echolialia so a proper conversation isn't possibly yet. His understanding has improved quite a lot but still nowhere near age appropriate. I guess what I'm trying to say is things are slowly improving. I frequently go between being gatreful for the progress and wishing it was more.

He doesn't have PICA so that does sound like another layer of stress added on for you. 💐

i get you want a direct answer but in reality they have no idea . My Ds about 4 started talking in full sentences..
a member on here had her child say mummy first time age 7 ..

In reality you will never get that answer . I had speech therapy involved with my Ds . They suggested use one sign a week and do the sign with words . No idea if it will help you but without speech can help your dc communicate

It’s completely impossible to say. Some children talk at 7, some at 12, some never. They say if you’ve met one child with autism, you’ve met one child with autism. Meaning it’s impossible to compare because they’re all so different. My
son does many of the things yours does, including the PICA, and won’t use cutlery but can somewhat dress and undress himself. At 6 he’s non-verbal apart from Mama and NO. I don’t know if he’ll ever speak, and no we don’t have a “normal family life”, but the fierce joy and love from seeing him accomplish something that most people take for granted their children will do is like NOTHING else. You’ll find your way!

You have pretty much described my nephew, also 3 and a half so I don't have much insight for the future I'm afraid but solidarity for the worry.

I personally feel that there will HAVE to be more help/provision in the future as the numbers of similar characteristics in our small area alone is mind blowing.

Can I ask if the sibling is older or younger?

My son has ASD. He didn’t say a single word until he was 4. He’s now 8 and never stops talking. We say he’s making up for the years he didn’t talk 😂

I have kids in special school. I'd say I was told most kids who are in special school remain in the system becuase that is what their need is. What is the reason you are looking at special and not mainstream/ mainstream with unit? Have you been told to do that?

It could be at 5, or 9, or 18 or perhaps never and he will communicate in a different way. I’m sure you have but definitely familiarise yourself with autistic traits in girls, there’s a huge genetic link and girls and women often are missed because they present differently to boys and can mask x

This article helped me

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3340586/

Generally speaking it seems to make a lot of difference if you can work on his flexibility.

My ASD DD was a month shy of four before she walked or talked, no words whatsoever before that. The first night I heard her talk, she’d come to my bed for a cuddle in the early hours and suddenly really softly but clearly counted to 64!! The hairs on the back of my neck actually stood up, it seemed so strange. 64, and then she fell back to sleep whilst counting. It became clear very soon she was a mathematical savant.
A good friend, their son with ASD needed a specialist school for primary and half of secondary but really came on and yesterday got his first good full-time job.
I really do understand the worry, so I won’t say try not to, but I will say my children who don’t have ASD love my ASD children deeply and vice versa and we are a happy and caring family in our own unique ways.

Dd2 started talking when she was 4 but only single words and mostly repeating things from the tv. We found PEC’s helped a lot and attending a special needs nursery helped, she was pushed into mainstream school which I feel slowed down any progress. DD has PICA, she’s now 17 and still eats things that she shouldn’t (but a lot less than she did when she was 4).

There is no point in comparing your child to others he's on his own trajectory, my son is 13 severley autistic and non verbal but he's doing great at his own pace
As a pp.said I'd toy have met one child with autism you have met one child with autism.

Sorry, it’s not what you want to hear but I agree with others. You simply cannot tell. One of my children didn’t say a word until 2, then had a ‘language explosion’ and spoke better than children twice his age. Thought he was just really articulate, taken a few years to realise it’s some sort of ‘high form echolalia’. Actually was one of the things that made me realise his dad is probably autistic - used to think he had a fantastic memory for remembering old school comedies especially as an I’ve breaker. Turns out when he’s stressed or unsure what to say in a situation he just resorts to echolalia as a form of calming.

My other son started using words very early, but in repetition. Very little verbal progress by 2. By 2.5 it became evident that he was only speaking in echolalia and had little to no ability to communicate. It’s been a slow (slow) progress but he’s improving.

I know it’s difficult but talking isn’t the key, it’s finding a way for your child to communicate. Unfortunately with ASD that is always going to be a huge difficulty at times. My older, verbal, son has shutdowns where he will not speak at all or meltdowns when asked to communicate something. So the ability to verbalise doesn’t always make it easier.

I have 2 junior school aged autistic children both were non verbal at 3.5. One is still non verbal, yes to moving him from standing on tables and also trying to change his nappy while he wriggles and runs away. The other is verbal, can make himself known, goes to the toilet etc.

I too really wanted to know what the future would be like when they were toddlers. I asked every speech therapist if they would talk. The very hard truth is there is literally no predicting at 3.5 how it will go, in some ways you are 'lucky' to have a concrete diagnosis.

Definitely join a local group for families with children with additional needs.

My DS is now 16, similar situation to your DS. We said we’d never tell him to ‘shut up’ if he ever started talking. He often has to remind us of this as once he gets on a topic e.g. politics, football, formula 1, farming, he just talks & talks.

He’s just started a learning supported college course in agriculture.
OP, I remember the feelings you have, we still don’t know what our ds will be able to do. In many ways he’s just like a NT child but in others ways he’s very different. I found it easier if I didn’t think to far into the future as I would just spend time going over negative scenarios. I think I went through a period of grief of the child I didn’t have. As it is he’s absolutely fab & I probably wouldn’t have it any other way.

I've worked in a MLD special school specialising in ASC pupils for a number of years. I agree with all the professionals. Last year I had 2 pre verbal yr 6s, 3 others in nappies. 13 yr 6s in the yr group. Current yr 6 has 3 pre verbal, 1 of them in nappies. 16 yr 6s in the yr grp.

Most of the 16 current yr6 were pre verbal when they started school.

We have around 30 pre verbal Reception and Key Stage 1 chn, all 30 in nappies. 40 total in this age group.

There really is no way of knowing who will speak fluently, speak a little, babble etc as they grow. We just do all we can to promote communication.

Mine is ASD and bilingual. He said a few words here and there, mostly "car!", said Mummy when he was 3.2. Honestly I can't remember much more. He is nearly 12 and his speech isn't great, but he does ok.

I found that age really hard with my little one, he was very similar to your description of your son. It's really tough and like you I worried about what to expect. Our SALT recommended trying a mainstream school rather to see if he managed and we found a really lovely, inclusive, small mainstream school for him.

In the three years he's been there he has learned to talk (at around age 6) and toilet trained. He is immature in some ways compared to his peers but his progress has been amazing, even down to eating school lunches which I never thought he would do.

I would really recommend having a look around lots of schools and getting a feel for how much experience staff have with children on the spectrum, their use of PECS, sensory time etc. It does get easier, we never thought we'd be able to go out for meals, have chilled days out etc but we can (with an ipad as backup!).