Will my ASD son ever talk?

[Chris12456]

Hi,

My son has just turned 4 and we are pretty certain he’s on the spectrum. We have been struggling with the whole thing for a long while now and we find it very tough, like lots of other families. The days after a brutal meeting with the SENCO at his pre prep are particularly challenging. We feel we are facing wave after wave after wave of negativity from all quarters.

My question is particularly around speech. My boy knows many single words and has just started to use “I want……” to meet his needs. But… that’s it. He says nothing at nursery really and according to them he isn’t accessing the early years curriculum at all. His attention is very poor and he has a strong need to bounce around the classroom. These issues making accessing structured learning impossible.

Has anyone else had a similar situation? Did their child go on to speak? We don’t know any other SEN parents and we feel very alone with it all. The nursery make us feel like they’ve never seen a boy like him too.

Thanks in advance for any help.

I think the fact he knows and uses single word and has started saying 'i want' is very positive.

My ds lost his speech at 2.5years and only started regaining it at about 4. I think at 4 he probably had about 15 single words. Now at 8 his speech is still behind his peers but you can have basic conversations and hems very good at getting his point across if he wants/needs things.

Has you ds been assessed by an OT? The bouncing around could be sensory seeking behaviour.

Ds's nursery was similar about his behaviour. They really didn't have a clue. Ds very rarely spoke at nursery because he was quite overwhelmed and at that stage his speech was the first thing to go.

You need to figure out what the problem is. Mines realisation with my son was apraxia and phonological issues. He was able to say certain words and ask for some stuff but we realised he couldnt pronounce them properly and when we introduce lots of words he gets stuck when pronouncing them. We are targetting his apraxia now which is a motor disorder where the words dont come out right due to poor motor planning. We do short and repetitive practicing of sylabuls and letters in different formats to aid in his motor planning of words. Thats what we feel is causing the speech issues.

Thanks so much for your responses, really appreciate that.

It’s very hard to say what his core issues are with speech as his understanding of things is still so limited. He can’t follow instructions other than routine type stuff, so we don’t know what’s going on really. At the moment we can’t ever imagine him holding a two way conversation. It’s very stressful when people try to talk to him when we are out and about.

We are finally having him assessed by an OT early next month. Covid has been delaying everything!

The Nursery doesn’t sound very good. Do they have a Senco person there? They should be helping you, that’s their job. I am so glad that you are having his asssessed by OT next month. I hope that they can help you.

Our son is similar. At 3 he had masses of vocab but no conversation and could barely express what he wanted. When he did start to speak the pronouns were all mixed up with a lot of echolalia. His school based nursery picked up on it and started giving him 1 to 1. He started online speech therapy with some sessions eventually in person or in groups in school.

He's 4 now and has started reception with an assistant. The school have applied for an EHCP and we are waiting for the outcome. The paediatrician says he may be on spectrum. His speech has improved significantly and he's now able to describe scenes in books or TV accurately with joint attention. He has delayed writing skills too. He is not fully conversational. Don't give up but your child will require a lot of extra input. We ended up rejecting the place at our local prep as they couldn't give the support he needed.

We have also applied for an EHCP. Bit early but I couldn’t see them rejecting it. He’s currently receiving the max amount of EIF funding. But I’m not sure those financial resources are being used to the best effect.

We would love him to go to a normal school next year, but who knows if that will be possible. Kingswood House in Epsom may be an option I hear as they are great with SEN kids, so maybe they would look at him.

The nursery are trying their best I think, but they aren’t the most positive about him, which we find hard.

My advice is to try the state sector and get your child to somewhere with SEN experience. Early intervention is critical. My child does the bouncing around and grabs other children and the school have used that as a reason for 1 to 1. They're also trying their best to manage the transitions as this is where kids on the spectrum sometimes fall down. We are in SW London and have found our state school based nursery helpful. They flagged up concerns in February and we are due the final EHCP outcome at the end of this month. The school did the whole application process and they had a ed psych, speech therapist and OT report. Your son sounds like he may need extra proprioceptive inputs which will help his day (e.g. trampolene)

As a parent the process is tortuous, the meetings and their aftermath are horrendous. Myriad questions about what will happen follow but I've heard a lot of success stories. I've got lots of plusses too, my child is great with numbers, memory and singing. He even knows the planets in order. It's important to focus on this too.

Hello, we are in a very similar situation with our Son who is the same age. He can say a few single words but cannot put a few words together. He has been having SALT and has an ASD diagnosis, we are in the minefield of EHCP's at the moment. I feel like doors just keep closing on us our Son struggles with so much but getting help seems such a battle, we are squirelling money away to get an appt with a private occupational therapist. Sorry my post sounds negative there are some wonderful things but just wanted to reach out and say hey i get it

I’m sorry to hear you’ve been having a tough time littlehen, we have certainly had all those problems getting help too. We also looked into a private OT but didn’t do it due to the extortionate cost of the initial assessment. I self referred for NHS OT early in the year and that’s due to start soon. However, as time has gone on I’m thinking OT might be the area we need to focus on, so if we don’t get a lot through the NHS, maybe it’s worth paying. I pay for a private SALT, but it seems pointless as my boy just ignores her.

It’s one almighty slog, but I’ll just keep plugging away everyday, whilst trying to also give lots of attention to his neurotypical older brother who I don’t want to feel left out.

Thanks for all your replies. Really helpful.

Hello, the single words and "I want" is really positive. The first functional speech my daughter used was "it's stuck" the "we want" (meaning I, she reverses pronouns) and "help you" (you=me) and she's making constant but very slow progress with this, so I'm sure your son will too.

My DD is developmentally delayed with possible ASD (pending assessment). I didn't really realise there was an issue with speech until this year due to a lot of general/delayed echolalia and idiosyncratic phrases which essentially fooled us into thinking that her speech was normal! I think she's "masking" already. She doesn't have much functional language but uses it's stuck, we want, help you, more, where's it gone?, again and so on and lots of single words for requests for food. We're waiting on SALT at the moment.

I agree the chats with the SENCO and other staff at pre-school can be soul destroying :( I take it really personally which I need to find a way not to do, obviously I'm always going to be emotionally invested in my child but I need to not feel personally attacked by what they say.

Re the school I do agree that for children with SEN that state provision is often better too. I've found a good supportive state infant school that certainly seem good with SEN for next September. I don't know much about how it all works but we're applying for an EHCP and it seems like state schools actually have access to more services than private?!

It's a lonely journey, local friends all have NT children and the future feels uncertain. I also have a NT DD who is 12 (this month).

My son was similar at 4. The nursery raised all the red flags but didn't know how to deal with him. He only said " no" at nursery. We got him an EHCP and it is all doom and gloom with the reports etc but you have to do that to make it clear the needs are enough that the child needs an EHCP. My son was eventually diagnosed with ASD, language disorder and relatively recently ADHD.
Once he got 1:1 support he started learning and made great progress. Aged 10, he is in a mainstream school with a lot of support, is an extremely happy boy and while he still has language difficulties, he DOES NOT SHUT UP. He just loves to chat. I still worry so much about him but it gets easier over time (in the sense of less grief more just cracking on). As PP said, its also important to focus on what your child enjoys and their strengths.

If I had to bet, my son would be diagnosed with all 3 of those things if I ever did get an appointment for him. I asked for him to be referred around 20 months ago I think. It’s really shameful.

I am glad to hear your son has made progress and is happy. Being happy is the main goal of life, so that’s a real win. My boy also seems happy.

I guess I just have to try to worry less and try to crack on. We are making progress modelling language to him. The latest is “mummy/daddy, help”. Every little win counts!

My DS was DXed when he was 2.5, and apart from a handful of words, didn't start speaking and holding a conversation until he was 8. He's 16 now and speaks very well, his speech is similar to that of a deaf person, sort of nasally, and he has a lisp.

Good luck with the diagnosis process, and well done starting his EHCP this early, it's worth it's weight in gold when you get one.

My child didn't speak much either. I started decorating the house for any occasion and found it triggered more interaction. I got everyone dressed up too for occasions.

There is nothing more depressing than having a school just complain about a child and act like this is unprecedented. You'd be better self referring him for an EHCP and getting him somewhere else.

We know his current school don’t feel equipped to deal with him and quite frankly, I’d rather have him somewhere more positive. He’s making progress at home, but according to the nursery he’s making “zero” progress there. My partner’s mental health is definitely suffering from all this and we feel a constant judgement of him all the time, which is tough. I do hope things improve.