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.

Brilliant op you’ve done so so much.

Self care-wise try to remember to fit your own oxygen mask first (I know how hard this is). Do you have support from friends and family in RL?

I’ve had a lot of support from the Contact a Family charity. They are an amazing charity who can advise on things like DLA and EHCP even if no dx yet. They have a good helpline and anyone can book a 45 listening ear appointment just to chat about how you feel about everything. I’ve used this several times and the team are very kind

Completely agree with what @FranklyBoyle said. DD 3.3 yrs is Autistic and works with a speech therapist in nursery. We also go to a small toddler group for autistic kids run by a specialist which is lovely, if you have something like this near you it's a great way for your child to connect to others who he may find it easier to relate to.

Play is a two way street, autistic play is still beautiful. Instead of trying to encourage imaginative play, follow his lead and take interest in the kind of play he likes. Connecting with an autistic child is about understanding their world, not getting them to participate in ours. How you describe your DS is exactly what DD is like, loves chasing games especially, so we focus on activities that she will enjoy while encouraging her speech.

With the speech, DD has really thrived and come so far since working with her speech therapist. She has changed our lives, including mine, as she was the only person who didn't gaslight me about my ASD concerns in the first place. The way she works is play based which is perfect for DD. DD loves her and I'm so excited by her progress. We have also been through the NHS SaLT route which was quite different, more structured, and DD is now discharged as the service offered is unfortunately very minimal.

Do you use a visual timeline or now and next board? These are things that helped us to reduce tantrums as they gave DD a clear idea of what is happening that day.

No one can diagnose over the internet and the assessment process is very thorough but he is showing a lot of signs of being autistic. I totally get it’s not what you planned and I really know how hard it is at the start. I remember just crying and crying. How I wish I could’ve seen how much stronger and better we’d all be a few years later. It is so hard still but where you are now - that is the worst time. The not knowing etc. Now my daughter has friends, autistic friends, I have mum friends in the same boat. You’ll be ok.

Lots of children have tantrums and speech issues, but it sounds like a sense you have that there’s something more. Have you scored his behaviour on the MCHAT? That is quite useful.

I’m afraid I so badly wanted my ds not to be autistic that I avoided getting him dx. Big mistake as this meant we didn’t have a dx in place when he started primary.

He’s still the same lovely ds and just as autistic as he was. He’s doing ok with school work, has some nice autistic friends and goes to various out of school activities. He’s funny, kind and a great kid. Who is also autistic. I wish I had understood this back when he was 3 and just gone for the dx.

I can't prove it helped but my dd (diagnosed at 2.5) was in an early intervention program from diagnosis including slt and aba therapy. She is at university now. I'm not sure early speech therapy alone is what made a difference, I think it's more holistic. DD's therapy was fully funded as a research project, its worth investigating if there are any programs near you

On MCHAT he scored as 4/5 (medium)

@gogohmm thanks, do you have any idea how I would go about this?

You've already got so many balls rolling. With a child that's struggling with lots of things, that's really well done!

The coat thing - it could be the transition. Even going from one great thing to another great thing can be hard for people with asd.

It might help to give a prior warning such as a sandtimer, use photos, a first and then type timetable. Look into Makaton signing to see if that helps him to understand. It's also great help with language development.

It really is working out why and what helps. It's not easy! But once you start getting more understanding (time is the only way!) it's easier to work out the things that will help.

Also my dd can be totally fine with an item of clothing for weeks/months even. And then suddenly the 'arms don't feel right', or the 'material has changed feel' and that's it! It might be that she's slightly grown and now her jumper isn't as baggy, or the material has been washed so many times it feels different. My dd now wears all her clothes inside out as she can't tolerate seams or labels at all. She also has clothes three sizes too big. And even then only has two outfits that she can wear. So I have to wash and dry overnight. Even then there can be meltdowns. A lot of it is relating to many many different things all coming together in the right/wrong way.

I’m wondering if maybe we just didn’t put the same amount of effort into his language as we did with our elder DC as he’s always been so lively/doesn’t sit still long enough to get comfy and read like the others did, and as he isn’t at nursery yet he hasn’t had enough opportunity to socialise and learn social cues hence the cuddling people

@FlatStanleyWasMyFave
That's silly talk! Please do go down that route. Language develops naturally. You don't need to 'put effort in'.

Whether your son is asd or not, he is a different person and you can't be comparing kids. Both my children are asd. They are both different in almost every way!

Please don’t go down the Aba route. It is widely considered to be abusive by autistic adults who were put through it as children. It is thankfully not common in the UK but please learn more about autism and research and listen to autistic adults before even considering it. Facebook groups “ask autistic adults” are helpful.

@FlatStanleyWasMyFave this is absolutely nothing you did. There’s absolutely no way any of that would even cause language issues honestly.

My DS was very echolalic at 3. Was on the waiting list for SaLT throughout Covid. We didn't go private and tbh at nearly 5 he has developed loads of original speech of his own accord. He finally had an NHS speech assessment recently and is at the lower end of normal range for nearly everything they measured.
I wouldn't get into debt for private SaLT - agree with pp, get the Hanen book and read up on echolalia online and you can give a fair bit of help yourself.

I recommend autism a practical guide for parents by Allan Yay.

My asd ds started speaking a lot more after watching Peppa Pig.

I think it's easy to put down to their age, or because they're an only child, or because you did something differently to their siblings, or because they missed out due to covid. I was the same and ds wasn't diagnosed with Asperger's syndrome until he was nearly secondary age. I'd say though that your ds is ticking a lot of boxes and I would expect him to get a diagnosis.

My son and daughter were diagnosed at 2 and a half and just 2 respectively. Would definitely recommend the Hanen books mentioned above. Have you looked at Cerebra and Caudwell Children who fund speech therapy and offer an ASD assessment service?

The face book page Gina Davies Autism centre and anything by her in general is really good. She is amazing support and courses if you ever get the chance.....the lady who started Attention Autism and bucket time but also does eating, potty training, coping strategies etc.

before you pay for any therapies, get a formal diagnosis. it will sound odd, but it may be best to get the diagnosis when your child is at his worst, because the diagnosis letter is then a starting point for what therapies you might get on NHS etc.

after you have that letter, then look into what support you can get.

Came here to say what PPs have said. "Your goal as the parent of an autistic child is to help them thrive. It is NOT to help them appear neurotypical." Is spot on

I have a DD who we think is autistic but her communication/speech when assessed was 2 years above her chronological age (3yrs vs 5yrs) but we STILL have screaming when trying to get a coat on and get out the house. Mostly now it's sensory but pressure of the transition doesn't help, when she was younger transitions were a bigger issue. I try and give plenty of warning about when we need to leave and what she needs to do and then give her space to sort it out. I try and keep words and even eye contact and my presence to a minimum because it's a trigger for her so I sort myself and DS out in the meantime now but obviously when younger she needed more help.

Maybe you could teach the coat flip so they can have more autonomy?

Maybe a this, then this, then that type chart to explain going out? Coat and shoes, then bus, then playground type thing

Maybe a different option of warm clothing? Gilets are less sensory input for DD and weirdly a light weight snow suit is working relay well for her and her previously good/comfy coat is AWFUL. She's 4 and started wearing underwear before 1.5 years but at 3 they became absolutely intolerable, leggings/trousers/tights then went too and she'd worn them since birth. None of us is her choosing not wear that stuff, she just can't manage it.

You mentioned toddler groups, have a look around and see if there's anySEN ones near you, childrens centers would probably be helpful here. Portage is a service that works with SEN kids and ours has a playgroup but I've been told DD would be the only one who can talk so we've not taken her, she likes to play with older kids so wouldn't be a great environment for her. Meeting parents in a similar position is nice too.

@gogohmm ABA therapy is considered abusive by many autistic adults now and it's not recommended by them at all

stopabasupportautistics.home.blog/2019/08/11/the-great-big-aba-opposition-resource-list/?fbclid=IwAR1Wpmbgy4ruvoX91AAb5IDKKazzbSDO4bMAWly5UWh7c7QJSQ6RzleY_SQ

We found a solid routine helped massively along with a picture chart of what's happening. We also used picture charts for bed routine and getting dressed. The best way u can support your child is to manage their environment. If they are struggling look at what you can do to resolve the issue. The less overwhelmed your child feels the more able he will be to learnand develop. Also don't try to change/take away interests or stop things like echolia it helps your child feel grounded so is actually really important

I think (and I’m saying this nicely) that you really don’t want him to be autistic and that you feel autistic = something wrong, that if you had done more, he would be better…. Please try to reframe it as autism = different neurology, not worse, not less able.

I would disagree completely!
You don't need a diagnosis to get speech/ot therapy as they are needs based. A paediatrician/health visitor/Portage worker can refer you if they recognise the need. Getting a diagnosis could take years and you don't really want to wait that long to at least seek help.
You can also get an EHCP without a diagnosis as it's also based on needs. It only makes sense as there are thousands of children in the UK who will never get a primary diagnosis but still access support/go to special schools.

I would find a private speech therapist/OT if you can afford it, at least for a bit so they can give you a starting point and confidence to better understand/communicate with your child. Waiting lists for the NHS are abysmal.

Good luck!

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.

Starting nursery will likely help social communication and play skills and will also provide valuable written evidence of your child's needs and strengths if/when you decide to apply for an EHCP.

I would try and get DS on the NHS waiting list for ASD diagnosis if he isn't already, but beyond that my experience is that an EHCP is more important than a formal diagnosis especially when they are very little, so I wouldn't go for private diagnosis unless the EHCP request is refused.

FWIW my younger DC whose speech is fine and currently shows no red flags for ASD has horrific tantrums about getting dressed and putting a coat on etc. It think that's just toddlerhood.