3yr old with ASD- don’t know what to do

[Bubl]

I feel completely out of my depth and constantly worried. I have a 3 year old who has been diagnosed with ASD. Non-verbal, doesn’t follow instructions, still in nappies… the list goes on.

The negativity from professionals is relentless. No one ever has anything positive to say. In terms of therapies, she’s only getting one session of speech therapy every 6 months, although I don’t think that’s helping. The gap between my DD and other children is widening all the time.

I don’t know if she will ever be able to hold a conversation or live independently. I feel like I don’t know how to help her and I’m going out of my mind with worry. Does anyone have any words of wisdom? Thanks.

Have you applied for an EHCNA? An EHCP can provide additional therapies e.g. SALT and OT more frequently than otherwise available. And it will provide support in nursery and then school.

Do you have portage involvement?

If you haven’t already applied for DLA do apply.

Thanks so much for your reply. I have applied for a needs assessment, but they refused to even carry out an assessment. I’m appealing this.

She’s not eligible for portage as she’s in nursery .

i haven’t applied for DLA. I know I probably should.

Thanks/ it’s helpful to know I’m at least somewhat on the right track.

Are the nursery providing any support? As DD is already in nursery they can apply for early years inclusion funding whilst you are waiting for Tribunal. Have you thought about independent assessments for the appeal?

Do apply for DLA, the Cerebra guide is helpful when completing the form. If DD gets DLA the nursery can apply for the disability access funding.

If DD has been diagnosed within the last year Scope have a mentoring service for parents.

Big hugs, I remember how scary it is staring down that road. The best advice I can give you is to not look too far ahead as so much can change and the endless worrying about what may or may not happen doesn’t help anything. Worry is only useful if it prompts action.

6 monthly SALT sessions is going to do nothing. Is she at nursery? Apply for an EHC needs assessment as she will likely need an EHCP in place to access a specialist school. Ask for her to be assessed by SALT, OT and an educational psychologist.

Definitely apply for DLA, use the Cerebra guide to help you fill it in.

Look at the Hanen ‘More than Words’ book and the intensive interaction play approach to help improve engagement.

Three is a hard age, even without special needs. Give yourself lots of grace, you’re doing a great job

Thank you. The nursery have a good reputation for SEN. I assume they are applying for funding.

I don’t think I need independent assessments for the appeal. It’s a low bar to reach to be assessed and she more than meets it.

I will look at Cerebra, thank you. I didn’t know that there was funding dependant on DLA being awarded.

Did not know about Scope either, thank you!

The appeal is a pita and an unnecessary waste of time but you are likely to win as the bar is only that she might have SN’s.

Comment above was to that’snotmycar. Sorry, I’m not very good at all this.

Openupmyeageryeyes- thank you for your post. Logically I know you’re right, but I’m worried sick. There are so many issues, big and small. I feel really alone with it all.

She’s at nursery. They let her sleep today so she’s still awake and probably will be until 10pm or so. I appreciate there’s not a lot they can do about her sleeping, but I’ve worked so hard to try and get her into a good pattern and a nap will throw off her sleep for weeks now.

EHC needs assessment turned down. I’ve submitted an appeal. I’m fully expecting a battle the whole way getting an EHCP.

I’ve got the Hanen book. The techniques aren’t working unfortunately. Nothing seems to work.

Check the nursery have applied for early years inclusion funding. They may not have, as you would probably know if they had. They can ask the Area SENCO for advice too.

The nursery can claim Disability Access Funding for 3 and 4 year olds in receipt of DLA and is £615 per year.

The threshold for an EHCNA is relatively low (a) has or may have SEN, and b) may need SEN provision to be made via an EHCP) and depending on the evidence you already have you may not need any other assessments, but if you do think you need one or more you should approach professionals ASAP as they have just as long a wait as there is for Tribunal. If you think you need an assessment but can’t afford it and aren’t eligible for legal aid Parents in Need can sometimes help.

I’ve got the Hanen book. The techniques aren’t working unfortunately. Nothing seems to work

Try intensive interaction if you haven’t already. Have you looked at attention autism and the attention bucket?

Thanks for the responses.

i will check about the inclusion funding, thanks.

I think I’ve built a strong case for the appeal. She very obviously needs an EHCP.

I’ve tried intensive interaction and it didn’t make a difference. I’ve also tried bucket time, but it wasn’t very helpful. The usual techniques just aren’t working.

Change can take time so make sure you’re not giving up too soon - not saying you are but just something to be mindful of as you’re trying to create new neural pathways. Sometimes nothing seems to be changing then they make a leap forward.

If it were me I would be trying to get her in a specialist preschool. Even with funding they will not have the same expertise or therapies incorporated into the daily routine as she would get there.

Thank you. I needed to hear that.

My understanding is that I can’t get her into a specialist pre school until she has an EHCP. Happy to be corrected though- there’s so much I don’t know. I’ve found that that the nursery have applied for inclusion funding, which is good.

Thanks again for your advice.

Many LAs have specialist nursery places for those without an EHCP. In some LAs they are called assessment places, as DC go through the EHCP process whilst there. Although as your LA have refused an EHCNA you may find they refuse one of these places as well and unfortunately without an EHCP there’s no way to force the matter.

Use all those negative letters to your advantage for your child, go and see the specialist nursery places, call social services and ask for the additional needs department, tell them you want a child in need review, ask you LA for an educational psychologist.

if you have a diagnosis of autism for your child you’ll get that placement , if they refuse a EHCP- appeal appeal appeal.

..ask the LA for the learning disability team, get them on the case.

i cannot stress enough how important a specialist nursery placement is, you’re trying everything, google the numbers for the LA. And call social services.

apply for DLA. If anything its more evidence to support her EHCP.

keep writing and posting on here.
you are not alone.

OP, talk to us about intensive interaction. So you sit down with her and some stuff on the floor. What does she do? Does she look at you? Does she make a noise? Talk us through it….

Thank you so much for your responses. To answer your questions:

I had no idea that specialist nurseries existed. Unfortunately I think I’ve missed the boat on that for this year as applications closed much earlier in the year.

I fully intend to appeal all the way with the EHCP. Not sure yet if mainstream or special school will be the way forward. Her paediatrician said mainstream with support would be fine.

I have contacted Scope about some support and am on the waiting list.

I can contact the learning disability team, but what can they offer?

i need to go back to the dla form. I started it a while back.

When I try intensive interaction, she either looks at me with a bemused expression or takes her toys and moves away or goes to a different toy altogether.

she can interact, but it’s on her terms. She loves nursery rhymes and I try to tailor things to her interests. Sometimes she just doesn’t want to play.

That’s fine, it’s about following her lead. She’s looking at you and connecting, that’s great! If she doesn’t want to play don’t play, just join her in what she’s doing, even if it’s jumping or spinning. You need to get into her world and it sounds like you are doing a great job. Don’t give up. Even when she looks at you bemused pull a face, look away, see what she does. Interaction on her terms is better than no interaction (for now).

DC join specialist nurseries (and schools) throughout the year, so it’s not necessarily too late in the day.

Does she get portage? Www.portage.org.uk

Thank you for your responses.

I did enquire about portage ages ago, but she wasn’t eligible as she was in nursery.

I’ll have a look at specialist nurseries.

I will keep on going with interaction.

thank you.

My DS is not too much older than yours and, while we don't have a diagnosis yet, it's on the cards. I don't have any good advice on accessing statutory support (I've yet to get anywhere with anything useful - one online SLT appt and some pretty useless recommendations from the Early Help team after a year and a half)

Stuff that has been helpful:

• the book An Early Start for your Child With Autism. This follows the Early Start Denver Model, and gives really practical advice for parents on how to encourage joint attention, expand play and communication. I also tried the Hanen book and didn't get anywhere, but this one worked for me
• getting an ABA consultant. DS's ABA programme follows the Early Start Denver Model (so lots of child-led approaches) and not only has this programme helped DS progress with communication and life skills, but the consultant has also been the most useful source of info and advice on how to navigate the broken SEN system I've had so far. She's got years of experience not just supporting kids with ASD, but also in battling for statutory support and finding private support where needed. If you do the learning activities at home yourself, getting a consultant to set up a programme for you may be a good investment that's more on the affordable side
• finding info on Gestalt Language Processing (you can get lots of free info from Meaningful Speech on instagram). Most ASD kids learn language in this way (hence the delayed echolalia) and approaching speech from this angle is meant to be more effective than traditional SLT approaches. And again, you can apply approaches yourself at home
• I'm on a waiting list for OT support, and reading The Out of Sync Child at the minute. Very excited to learn about if/how supporting DS better with his sensory seeking may help with his concentration and learning

Despite all this, I also feel exhausted and worried a lot of times, but finding the above has made me feel WAY more positive about DS's future as I feel like I'm supporting his development to the best of my ability. Feeling like I'm getting on the right track, and leaving no stone unturned for DS has done my own mental health a world of good. I cannot tell you. It's the not knowing if you're doing everything you can for them that's a killer!

Hang in there - it's tough but there's a lot we can do to help them in these early years!

Thank you Scratchybaby. Yes, you get it- it’s not knowing if you’re doing everything you can. Add into that that I don’t know if I’m doing the right thing.

ABA… I’ve heard a lot about it, but it seems to have as many people in favour of it as against. Again, it’s hard to know what to do for the best.

i will get that book you recommend. It’s interesting that the Hanen book wasn’t so helpful for you as it seems to be regarded as the gold standard. Hopefully the book you recommend will work as well for my child as it has for yours! Do you know how to find a consultant who is good? I’m always worried about splashing out a lot of money on someone who doesn’t know what they are doing.

Gestalt… I will look at this too. It’s been suggested that my dd may be a gestalt learner.

Out of sync child- I’ll look at that too. I feel so very very out of my depth. The more I learn, the more I realise I don’t know .And that’s with me suspecting that I may be on the spectrum too.

Thank you.

@Bubl honestly, at 2-2.5, I was so scared and stressed I couldn't eat, sleep, and didn't really give DS the attention he deserved because I was so scared - and ignorant - of what ASD was or meant for him and us. Once I started to learn more, and felt like I was on my way to doing my best for him (at least the best I can manage - I still have lots of learning to do and there's a long road ahead!) it felt like I could put the energy I was wasting worrying toward something constructive and that was a huge shift for me. And hopefully for DS.

With ABA, absolutely go with what your instinct tells you is right for your DD, and it may be ABA is not for you which is totally fine. It's not the only thing out there. But the online, anti-ABA content just doesn't match up with our experience of it at all (a lot of it comes from the US where the system works quite differently to the UK).

Our ABA consultant has been a really welcome addition because she is FAR more experienced, qualified and knowledgeable than anyone I've been able to speak with via nursery or the local SEND team (Early Help, who warned me against evil ABA, actually recommended I work on DS's eye contact - a massive no-no that our consultant spotted and told us is pointless and inappropriate and, ironically, the type of thing ABA gets bashed for 🙄also, DS DOES make eye contact just fine, just not with the Early Help lady! ). Our consultant focuses instead on more appropriate, sensitive, EFFECTIVE approaches to support DS with things that are challenging for DS but are non-negotiable daily tasks (e.g toothbrushing, transitions), and adapting approaches to play and learning to suit the way he learns best, incorporating his personal interests. It's all been really positive so far and way preferable to sitting around waiting for poor quality statutory support that may or may not ever materialise!