Help for ASD toddler

[FlatStanleyWasMyFave]

Were fairly sure our almost 3 year old son is on the autistic spectrum. Will paying for private SLT help his social communication and reduce the echolalia we have seen? We really don’t have the money for this but so desperate to get him help so would consider a loan. Also will starting him at nursery help his social communication and imaginative play skills which he currently doesn’t have?
is anyone else who has been in this position able to advise on anything that has helped with social communication and play skills and what the future looks like? Also desperate to stop the tantrums over everyday things like putting a coat on. Do these ever get better? Thankyou.

Hi there,
Our little boy has just turned 4 last month and we were concerned about asd but were told it was too early to tell. Were just starting the assessment now privately. He's been going to nursery and speech therapy privately for a year now.
Since starting speech therapy he's gone from no words to speaking in short sentences. He still uses echololia as a way of communicating but that's how he's essentially learnt to talk so do try and encourage that if you can.

Speech therapy is so expensive but I have a book that they use called more than words which is by hanen and the methodology that the ST uses with him.
It's an e book so happy to send it on?
My little boy has spent a year in nursery and that's taught him about socialising and he's also learnt different games and songs. It's been a bit of a up and down to be honest but it definitely does him the world of good too.
Honestly I found the best thing to start imaginative play was be reenacting scenes from shows or movies he likes. I don't know if your little boy likes tv or shows? We then started to broaden out the games so started to introduce new elements. But my son loves imaginative play now. We just had to find things he likes, dinosaurs, space, doctors etc...
I'm not sure how helpful any of this is 😂🙈 but I've been there so just wanted to respond and say your not alone.
Even if you can afford 3-4 sessions with the speech therapist that's probably all you need to start practicing at home. I found it's more then teaching you the methods then teaching the child.
Let me know if you want me to send the E book.

Hi thanks for your reply, it’s ok I can Amazon the book but Thank you so much for the offer, do you mind me asking did your DS have speech at all prior to beginning speech therapy? What was his play like at home/with other children/what first prompted you to think he may be on the spectrum? Waiting lists are so long and I’m going out of my mind with worry about what the future holds with regards to school and basically everything.

Yes. I live in Ireland and the waiting times publicly are crazy so decided to go private a couple of months ago. First, please please try not too worry too much. I know that’s hard but I’m sure you’re doing everything you can right now anyway for your son.
I was absolutely stricken with worry at the start. I had concerns when he just turned 2, he seemed to become quieter. Quite happy to sit and chill, not the usual manic toddler. But this was in the middle of lockdown and we had moved to an isolated area. He was my first child too so it was just him at home. So I was told it could be environmental.
at 3 he had no words really apart from dinasour. 😂 he started going to speech therapy and she taught me ways of communicating with him that really helped. I’ve since read up a bit more on add, (if that is what it is) and really a lot of the advice is quite natural. In terms of getting into their little world and using simple language, developing a routine that makes them happy and being patient waiting for answers etc.. (again these things can apply to any child in a positive way I would say)
whats your concerns? Are they just language based?

Just to answer your earlier questions. He wasn’t that fussed playing with other children but he loves too now. He now has a baby sister and loves playing with her. He’s still not great at sharing and he prefers playing with other boys, more physical chasing and games then sitting doing drawing etc.

I do have language concerns but it’s that he mainly repeats what we say back to him and sings the same songs on repeat rather than he has no language, there’s no back and forth conversing. Will respond to questions etc but not often his name which upsets me.
With regards to play, he lines toys up and plays with them in a very repetitive way, no imaginative play.
very active and loves other children/likes to join in chase games/interested in what’s going on around him.
very affectionate boy which is lovely but very overfamiliar with strangers - cuddling them/repeatedly wanting to tap them on the leg etc to say hello.
cannot sit still to follow instructions - at toddler classes he runs about the entire time, no sitting on the mat or following instructions at all.

Op we’ve used three speech therapists over the years for dd2 who has autism and maybe we’ve been lucky but they’ve all been fantastic and worth the money.

The first was when dd2 was four / five and the focus was on her pronunciation and some abstract thinking / categorising and describing things.

Then when she was ten / eleven there was a big focus on describing and recognising her friends, building social skills and role playing scenarios that she found difficult.

I actually wish we hadn’t stopped for those 6 years.

Looking back I now realise she probably had Echolalia and mild selective mutism, but they are considerably better without any specific speech therapy to tackle them.

My DS is 4 and has been diagnosed with ASD and GDD. He has a speech therapist who visits nursery. We experience ALOT of echolalia more so recently.

He’s been in the nursery he’s in now for just under 2 years. When he started he wouldn’t tolerate anyone in his space and wouldn’t acknowledge another child. Now he has a certain group of children that he does really enjoy spending time with. He will also engage in play. At home he does role play occasionally but this is a very very new thing.

Hello, I have a 6 year old autistic daughter who was diagnosed aged 4.

Your goal as the parent of an autistic child is to help them thrive. It is NOT to help them appear neurotypical. Echolalia is something that should be encouraged not stopped. It is a perfectly valid way of learning to talk. The way your child plays now is fine. There isn’t a “better” way to play just “neuro typical ways” and other ways. Imagine if a neurotypical child was discouraged from playing imaginatively and instead told to line up all their toys and play the same way every time? It’d be awful for that child. Encourage his interests, join him in his play and play the same way. Copy what he does. Don’t ask questions but comment on what he is doing.

The More than Words book is excellent so get that if you can. Check any therapist is neurodiversity affirming and is trying to help your child not help them appear neuro typical.

Some resources:

the Nuturing Neurodiversity Facebook group is an excellent and very kind space for parents in your position

NeuroWild is an autistic Speech and Language therapist and she is amazing. She’s on Instagram and Facebook. Please check her out.

Listen and learn from autistic adults.

It can be so stressful being the parent of an autistic child I won’t lie. But to reassure you, at 3 my daughter spoke entirely in echolalia (both immediate and delayed) and showed little interest in those around her. The pandemic hit so there was no SALT anyway. But she made progress anyway. She’s 6 now. Her speech is considered age appropriate, she has friends, she’s doing so well at school, she plays her way in a very rigid way but she also has moments of pure imagination with her sister. Both ways are fine!

I dint want to encourage you to get into debt, but maybe you could explain that you dont have much and ask the therapist how to maximise thier support?

Hi.
I have two older children who are both autistic.

Please be kind to yourself and remember that your child is only little.

Are the 'tantrums' you talk about him trying to get what he wants, or do you think they are more about him feeling overwhelmed - it could be sensory issues over things like putting his coat on, or it could be around the transitioning (for example from one activity or place to another). If it's due to him being overwhelmed then that's a meltdown and really is completely different to a tantrum.

My 11 year old who is totally able to talk and understand what's going on still struggles hugely with a lot of things around transitions and sensory issues. Her meltdowns are less frequent but still a handful of times a week. She just gets overwhelmed.

I think it will help so much more than anything else if you can read as much as possible about how it feels to be autistic. Not about how to change your child, but about how to help them to function in the world as a person that is autistic.

As a pp has said, I agree that speech and language is more helpful for giving you ways to play with your child in a way that will help to progress his communication skills. Lots key words, if you know what he is trying to get then say the words so he learns what they sound like. And certainly don't discourage the echolalia. It's helpful in so many ways. If the speech and language therapist has a goal of reducing echolalia then I think you need to look elsewhere.

I have three autistic dc, two diagnosed, one suspected. When my first dc was diagnosed ten years ago, I thought my job was to teach them neurotypical social skills etc. I so wish I had known what I know now.

Don’t bankrupt yourself trying to make your child appear neurotypical. Masking their autism will do great damage to their mental health. As a pp said, echolalia and stimming are to be encouraged. Try to value your dc’s autistic ways of communicating and interacting.

@FlatStanleyWasMyFave i have been where you are. I’m starting by sending you lots of un mn hugs. I know how hard the uncertainty can be.

These are the things I think I should have done for my ds at 3. Some I did, some not:

1. Focus on speech - buy a copy of Hamen More Than Words from Wilmslow Press. This book is very often recommended by SLTs and it is e ice de based. Produced by a Canadian SLT charity and lots of really practical stuff to do at home. Get weekly SLT privately if needed.
2. Get a hearing test - go private if you can afford it and if any glue ear get grommets. This really helped my oldest dc - speech massively improved after grommets even though he also has ASD
3. Get an ASD dx now and go private if you need to. This will help you get the support you need for him in school if Reception is a struggle.
4. Reach out for support for you. It’s very hard being a mum of a dc with potential SN. Prioritise self care and reach out to people who can support you.

Evidence based not ice based

Definitely not too early to tell I've got children diagnosed just before turning 2 and one at 3 helped parents raise EHCPs keep pushing.

What you are seeing as tantrums are likely to be meltdowns, which are quite different. They are not behavioural but a neurological response to sensory overload.

For example, your DC being unable to tolerate the coat is likely to be a sensory sensitivity and the last straw for them, at which point their brain becomes overwhelmed and they are no longer able to reason / process. The higher order parts of their brain shut down. You may have to accept not wearing a coat / not going out if it’s really too cold not to / wearing lots of thinner layers / taking jumper off but wearing the coat / finding a coat that DC can bear. Basically you will need to find ways of reducing the sensory demands so that your child doesn’t reach meltdown point so often.

To answer your specific questions. All dc with ASD are on different journeys as they develop and there is a saying that if you’ve met one person with ASD you’ve met one person with ASD, as people on the spectrum present so differently.

My ds no longer tantrums and has got better and better at controlling his emotions. I did an Autism parenting course and was told that children with Autism who would have been diagnosed with Asperger’s back in the day are often around a third younger emotionally than their chronological age. But many skills can be learned by autistic dc, it just takes longer.

My ds has two friends who are very like him. I used to feel so scared he would never have friends. For him SLT helped open the door to that.

He has never shown any interest in imaginative play. I have to accept that this is who he is as an autistic person and respect that.

He used to use echolalia but no longer does so. We didn’t discourage it as my understanding is it’s a valuable part of language acquisition for some children. It just stopped naturally.

for context with the coat, this is a coat he has happily worn all winter, then we haven’t been out much this last week or two as both him and his sister were unwell and suddenly the mention of putting a coat on prompted him to shout no coat and get upset. Is that classed as a toddler tantrum or an ASD meltdown? So much to learn

Something else to mention op is that my ds struggles to know when he is hot or cold as he doesn’t have reliable sensory perception. He could be baking hot but wouldn’t take off his school jumper. He might not see why putting a coat on made sense.

Have you got him on the nhs waiting list for dx? Definitely worth doing that.

And yes it’s not too early to tell. Fight for a referral. Sounds like you have a lot of evidence.

Its a long process and there’s a lot of fights ahead but take one step at a time.

Prioritise learning about autism and try to reduce the amount of stress on your child

Get the diagnosis as soon as you can.

Consider applying for DLA (disability living allowance)

Consider applying for an EHCP.

the DLA and especially the EHCP are huge undertakings. Also a huge learning curve. Only do it when you are ready then you can set about researching and learning.

it’s so hard but try to take care of yourself.

ive called the health visitor and asked for appropriate paperwork to be sent to me for completion (for referral I think?)
I’ve made a GP appointment for him to be seen and referred
made contact with local SLT service who said I can self refer but massive waiting list so also contacted private SLT to enquire about assessment and waiting to have a response
made appointment to view nursery next week with view to immediate start

This is an amazing speech charity and I would really recommend speaking to them www.icancharity.org.uk

You can book a call with one of their speech therapists for free

Do you think there’s any chance with all these behaviours that he isn’t autistic?

@MissHavershamReturns Thankyou ❤️

With the coat it might just be that he wants to stay at
home and is communicating that by saying “no coat”. Especially if youve all been at home a lot lately. Try to use visuals as much as possible. So you could offer “coat” or “hoody” with the actual items. Or you could show a photo of where you want to go and a photo of your home and ask him to choose.

you have to be a detective a lot and work out what the problem is