What therapy for ASD should I go for?

[PeachPumpkin]

I have a 5 year old who is severely affected by Autism. She doesn’t really speak to communicate, appears to have poor understanding, still in nappies etc. An EHCP is in place and she gets SALT and OT through that. Im looking to get her some therapy privately. Does anyone have any thoughts on what might be a good choice?

I’ve been looking at ABA. I know it’s controversial, but I’m so wanting to see a lot of progress. Or should I go for more SALT? Maybe more OT, one who specialises in sensory integration? I’m not sure what to do for the best but I feel that I need to do something. I’m keen to hear opinions and experiences. Thanks.

Does she say words but without meaning or is she totally non verbal? Can she understand simple instructions? Can she copy?

Thanks for your reply. I wouldn’t say she’s totally non-verbal. There are occasional words that she uses to communicate. Sometimes a couple of in context words when playing. She is starting to follow some very very simple instructions. We aren’t sure how much she understands. She doesn’t really do copying.

My son is adult now but was (is?) severely language disordered and autistic. At 5 he had lots of words but couldn’t make sentences and struggled with communication. He used “no” for both yes and no, no verbs or pronouns. He can now ask for what he wants and make jokes, read, and muddle through but his language is still different and probably more like a young child than an adult.
At your dcs stage he enjoyed music therapy, swimming lessons, and riding (RDA). We did S&LT but I think in hindsight that helped me learn how to help him than helped direct. Montessori ideas and “kit” helped enormously as did lots of activities. He remembers those days and often surprises me by just how much he heard and was taking in.

Rather than spending money on private therapy, I would spend your money on independent reports to improve the EHCP. If DD requires more therapies, including more SALT and OT, that should be in the EHCP. Although you may have to appeal, which is where independent assessments come in.

You could also look at rebound therapy, play therapy, hippotherapy, animal assisted therapy, music therapy.

Thanks for your responses. Horse riding and related therapies are a good suggestion. We did try that, but she refused to wear the riding helmet, so she never got to go on a horse. I intend to try again in the future though.

We are on waiting lists for music therapy and I’m trying to get swimming lessons sorted.

I will have a look at the others.

The suggestion to get reports to strengthen the EHCP is an interesting one. A part of me hates the idea of yet another battle with the LA, but I’m not the priority here.

Timetobegin, it’s lovely to read that your son has progressed so much. Did your son follow instructions at that age? Il look at Montessori ideas, thank you.

The benefit of pursuing support via the EHCP is it will save you money in the longer term. A good comprehensive EHCP can fund far more than the vast majority of parents can form to fund themselves. Also, only detailed, specified and quantified in F of the EHCP there won’t be a waiting list.

Thank you, that’s a good point. My DD doesn’t get much direct therapy through her EHCP, but it’s what was advised by the professionals doing the needs assessments.

Were those professionals LA/NHS professionals or independent? 99% of the time independent reports from someone with SENDIST experience are a world LA and NHS reports. Independent reports are far more comprehensive and detailed, specified and quantified.

The professionals were LA/NHS. I think their advice on hours of therapy was very specific, but there’s just not very much of it.

Also, the annual EHCP review hasn’t long taken place, which is just typical. OT has been increased at the annual review, but it’s still not much. I’m not sure really what’s reasonable to expect for a child with my DD’s profile.

How long ago was the AR? Are you still within the appeal window? If so, appeal and seek independent assessments. A good independent assessment will detail, specify and quantify far more provision than LA/NHS professionals.

SALT, for someone with DD's needs, I would expect weekly direct therapy. Fortnightly, at the very least. OT, difficult to say based on the limited information in your posts. But you mention sensory integration OT so more than DD is currently getting. Then other things can be included, such as swimming, music therapy, rebound therapy…

The annual review took place in December. I have received the amended draft, made amendments ans sent it back to the LA. I’m now waiting to hear from them.

My DD unfortunately needs a lot of OT. The OT report made for horrible reading, even though I knew it already.

Ah, so it’s not too late. If you feel further amendments are required, you can email again. Then, only the finalised amended EHCP is issued, you will have the right of appeal.

Thank you. I’m sorry for not understanding… do I email the LA to request further amendments before it’s finalised? I‘m not sure how it works as it will do course take a bit of time to sort new assessments and get reports.

You can email the LA now requesting further amendments. The LA may or may not agree, But, don’t allow the LA to breach the timescale for finalising. Once the amended EHCP has been finalised, you can appeal. As part of appealing, seek independent assessments.

Ok, thank you. So I should ask for more OT and SALT then. Her increased OT is only 13 direct hours a year.

Thanks a lot for your help. I’m so in a state with all this. I want to help my DD and it’s so hard to know how best to proceed. I’m happy to throw money at it (not that I’m rich) but I want to throw the money in the right direction and get the best ‘return’ possible.

Yes. Expect the LA to say no and for you to need to appeal. If you can only afford one independent report, I would focus on SALT. Make sure whoever you use has SENDIST experience. If you plan to appeal, I would start looking at SALTs now. Anyone good will have a waiting list.

Thank you so much for your help. I really appreciate it. I will do as you suggest. Unfortunately I fully expect this to go all the way to tribunal. My LA seem to like to go out of their way to make things difficult.

Thank you.

If he understood he could, so get his bag for school, “hold hands”, his communication was very very disordered, so I doubt much language got in at all. For my child language DID NOT have to come first for so many things and in fact if we had waited for his language to improve as so many people suggested he wouldn’t be anywhere near where he is now (I think!). So he read and did maths and swam and potty trained and rode a bike (with stabilisers, he’s very hypermobile) long before he could communicate well. What we had to learn was how to teach without the language, which is of course why Montessori stuff works so well because it is predictable and calm and on the whole learners “discover” the sense of things for themselves.

If I’m honest it’s fascinating and satisfying supporting ds. I wish always that he had an easier path, that he was safe and had a future that was not so reliant on others, but it is not awful. He is funny and naughty and so so loved.

That’s really interesting to hear, thank you @timetobegin. I’m desperate to accomplish toilet training, but she won’t even sit on the toilet. I’m so keen to teach her, but she won’t engage. I’ve bought tons of exciting toys, but she’s not interested in much at all. She has no interest in riding a bike. I can’t even get her to walk to school. I think she’s capable of so much more than she lets on, but I can’t seem to break through.

Im so pleased for you that your son has made such huge progress. Your story is really inspiring and you sound like a fantastic mum. Thanks for sharing.

Is DD under the continence service?

Nope. The OT sent me pages of tips to try, but as I can’t even get her to sit on the loo, I didn’t get very far with it.

In many areas, you can self refer to the continence service. If you can’t the GP or school will be able to.

Thank you. I’ll have a look at that. I feel so out of my depth with how best to support her.

@BrightYellowTrain Im sorry to be a pain. I just remembered that I asked the SALT (who delivers the EHCP SALT provision) if her SALT needed to be increased and she said no. She currently gets 13 direct hours a year. Do you think it’s still worth seeking an independent report? Thanks.

For the needs you describe, I don’t believe 13hrs pa is enough. Independent reports are worth it. They are a world away from 99% of LA/NHS reports.