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Here are some suggested organisations that offer expert advice on special needs.

Early intervention therapy- which one?

12 replies

LadyRenoir · 20/05/2020 09:03

So my toddler at 2,5 has been showing subtle signs of autism for a while, but they sort of exploded over the pas few weeks. It's a bit like if you switched the lights off in the house. He stopped smiling, no eye contact, speech regressed (it was very underdevelopped anyways), no seeking contact with us although he used to be a very cuddly baby, no response to instructions, he started living in his own little bubble and only seeks us when he wants us to give him food really or other odd occasions.
We have decided to try private therapy once restrictions allow it
We are not sure what would be best options- we are thinking speech and language, maybe OT? We have heard great things of ABA style therapies, but there is no way we could afford the amount of hours required, we can just about pay for 1 or 2 hours of something a week for a few months. I still think it would make some difference and give us a hope for a better outcome in future.
What are people's experiences- would there be any point in ABA for 2 hours a week or would it just be a waste of time?
Any recommendations around London?

OP posts:
Looking2Move · 20/05/2020 18:51

Hi Ladyrenoir

Your DS sounds like mine was a few years ago. It's great you are considering this so early on. I wish we had. He is now almost 7 and we are starting ABA this week. There are lots of organisations such as Child Autism UK who help train you and support you in finding a therapist at a reasonable cost. I agree, for it to work and to get the best results I think it needs to be a full time programme.

LightTripper · 20/05/2020 23:13

Beam ABA do distance ABA where they guide you and you do it (which also has the advantage you don't leave your child with strangers, and you can do just what you feel comfortable with). ABA is very controversial and I have mixed feelings about it despite having done it. Really we just needed a hand hold early on and I think it gave us that.

Speech and language can be great if you find the right person. It's much more than just speech: all kinds of comminication stuff. If you look up Walkie Talkie speech and language on YouTube, she has some really useful videos (mainly the older ones, they got a bit "salesy" in the last couple of years), as does Chirp Speech and Language.

LadyRenoir · 22/05/2020 19:45

Thank you both!
I dont think we can afford ABA, I was more interested in some variation of it. I read it changed over the years as well, and much of the controversial stuff is not practised by many therapists. Out of our financial range for the time being, but wil look into some of the reources you posted for ideas :)

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Legoroses · 25/05/2020 20:26

SLT and OT can be transformational. I really recommend sensory integration OT - I think particularly at this age, it can be very beneficial. And it's from a very different place than ABA - good OTs embrace autism and understand it. Sensory integration had clear benefits for my child for a hour a week over 8 weeks. So not ridiculously expensive if you need to pay. (Ours was from the LA.)

deathlyhallows29 · 27/05/2020 00:34

My daughter (7) has possible Autism and ADHD.

I once had my neighbour complain when she was 3 due to the noise she was making (having a meltdown) as there daughter was trying to sleep.

Anyway after speaking to my female neighbour (it was her now ex partner who complained) explaining my daughters difficulties and apologising for all the loud noises she made/makes she understood that some is beyond my control.
I can hear her daughters so I know she can hear mine.
Every time I apologise she says she doesn't hear anything. Which is kind but I know she can.

Anyway my point is, maybe just speak to them and explain your concerns. Not only that but give yourself some credit and slack. It's hard being a parent in general never mind to a child who has extra needs.

deathlyhallows29 · 27/05/2020 00:36

Sorry posted on wrong post. Don't know how to delete it. 😬😳

Harmos · 08/06/2020 12:59

I read a book which said that the brain's right hemisphere is what works when a child is born and circa 2-3yrs of age, a lot of the functions are passed onto the left hemisphere which if this is not quite ok, that's when the noticeable issues you listed are observed. There's also pruning of excess brain connections...you know what not even the greatest doctors/scientists fully understand why this happens.
My son was the same at that age, it was exactly as you said, as if the light of the house was switched off, the lost of eye contact and expressionless face were most noticeable. He was such a smiley baby before. He is now 3.4yrs and has made some progress but largely still in his bubble, no speech, no shared attention, not pointing etc.
Although we bring decent wages, but my wife has just lost her job, we cannot afford ABA so I dont know why others keep recommending it, yes would have used it if we could afford it!
You know what, just play with your kid couple hours a day, and talk to him, and use only 1 word to label items and just hold strong there as time goes by and let nature do its thing. But by all means go through the system to get the diagnosis as that would open doors to special nursery and schools, and whatever services the council of state offers, but dont get your hopes up even if you get something its going to be 1hr a week, that's going to do sweet fa.

LadyRenoir · 08/06/2020 14:32

It's upsetting @Harmos isn't it... I do want to stay positive and believe that to some extent, even the small amount of intervention will do something, and that having guidance we will be able to improve the outcomes for my child. He used to make the most amazing smiles back at us and I find it hard to accept that he may never be able to do it again (although he is still a happy baby just laughs at whatever makes him happy, unfortunately nothing to do with people who he largely ignores).
Not with children, but I know an adult who after a ruptured brain aneurism, and sever bleeding for hours was prognosed to pretty much remain a veg forever; this lady now walks and talks and while will never be independent, manages to have a decent life with her family. As you said, brain is something even doctors don't fully understand. I read a lot about kids who between 3/4/5 years of age made a big progress, so fingers crossed for our babies to follow that path!
ABA prices were a shocker. I thought that my partner and me had alright salaries, but no way in the world we could afford even a term on a part-time programme, not even mentioning full time and year long.
We have found a few therapists do do weekly sessions potentially, but everyone wants to do their own assessments (extra paid and really expensive) before doing any therapy at all, and I am not keen on paying loads of money just for someone to reproduce the same report we already have, just so that they can tell us the same thing we already know...

OP posts:
JaneDoe7 · 13/06/2020 22:31

Hi!
We are in a similar position but with a younger child. The ABA programs seem prohibitively expensive but we have just started a program with Blue Sky in London who do Pivotal Response Treatment. I am a total beginner, but this 'style' of ABA appealed to me.

We are currently doing a few hours a week over Zoom where we are coached on play activities and we spend time when we can during the week working on what we have learned. It's early days but I feel like at least we are doing something (especially during when we can't get therapy / coaching in person).

ttrrii · 22/09/2021 06:36

@LadyRenoir
How is your child doing now?

LadyRenoir · 15/10/2021 19:06

@ttrrii
Sorry for the belated reply, I am hardly on Mumsnet these days.

There has been a lot of improvements sicne- more speech, a bit more awareness, but also a lot of things are very difficult, overal communication, shared attention, communications with others, toileting... It's hard, but we're getting on with it.
We have done private salt which has been helpful and great, and then it's just us poughing through and pushing fot stuff on the NHS and not getting much in return sadly.

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bicyclesaredeathtraps · 15/10/2021 19:10

I'm so glad you didn't put him in ABA. I know of too many autistic adults who have PTSD from it - and this is "good ABA". It's very subtle, but there is a wide consensus amongst those who had it that it is abusive and causes lasting psychological damage Sad

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