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How to proceed for HFA DD age nearly 4?

(17 Posts)
FlossieFrog Thu 27-Oct-16 09:58:33

Hi all, I hope you can help.

My DD was Dx as high functioning ASD at the start of the year (at age 3). Her main characteristic behaviours at that time were language/communication being behind peers, echolalia (e.g. repeating whole books, peppa pig episodes), lack of social interaction with peers, some repetitive/obsessive behaviours e.g. puzzles being done in the same order, lack of imaginative play. She is very good with numbers and letters and has hyperlexic traits (counting to over 100 at age 2, spotting letters & numbers in the natural environment).

We were living abroad and had a therapist spend 4 hours a week doing ABA/VB natural environment therapy with DD. In addition the psychologist who did the Dx went in to pre-school and gave the staff advice on how best to support DD - making sure that she was pushed a bit more and not allowed to just do her own thing. The psychologist did a follow up in July and said the progress in DD had been amazing and that if she continues on this trajectory she will no longer meet Dx. Language has developed massively (tacts v strong, mands pretty good, w questions starting) but only stilted conversation as yet. DD is keen to interact with other kids but doesn't always have the words, she's much better with adults (who are more patient). Repetitive behaviours have disappeared, imaginative play has come on massively - DD spends lots of time voicing inanimate objects e.g. fridge magnets, toy cars etc.

We returned to the UK recently and have been trying to continue DD's therapy to ensure she stays on track. She is at pre-school 15 hours a week (she was asking everyday to go to school) and doing well. We are going through referral to the LA to try to make sure she is captured by the system and gets any assistance available to her.

DD is ahead in some areas (reading, numbers) but behind in others (writing, colouring she pretty much refuses to do but doesn't mind painting, conversation). However she is intelligent and keen to interact with others. I've seen her saying hello and goodbye spontaneously to other kids at preschool, and to random people when we're out and about.

Privately we have been working with an ABA specialist, but this is not going well. She wants DD to sit at the table, but DD is reluctant and has been really acting up, although she is fairly compliant normally. I don't feel like the therapist has done much teaching in the 4 or 5 sessions we've had, whereas our previous therapist really hit the ground running and was teaching immediately. The therapist has now said DD should be doing ABA at least 10 hours a week or it won't work. We know from our experience that DD picks things up very quickly and I am reluctant to tie her into more therapy, which reduces her opportunities to spend time with other kids. I feel like the therapist just doesn't really engage DD, although DD is happy to play with her.

I just don't know what to do. DH is away until the weekend and I don't want to upset him while he's away working and we can't talk about it properly. I don't have any friends nearby and my parents are currently away so I don't have anyone to discuss this with.

Do we try to find another therapist (this one was very hard to find), give up on external therapists, me try to do more therapy with her? I'm not sure whether we should expect any support from the LA - I'm assuming they would target scarce funds on kids more needy.

Help!

zzzzz Thu 27-Oct-16 13:41:18

Frankly m what you describe she will meet the criteria for dx. Autism is a life long condition so any suggestion that a child that has needed the amount of input you describe was misdiagnosed should be treated with extreme caution.

She sounds very similar to my DS who has severe language disorder and ASD (I would say the language is the real difficulty and the ASD not so much). We didn't do ABA but did provide a VERY supportive environment.

If your dd doesn't respond to your current therapist do make changes. The connection is everything.

push ahead with reading, it is extremely helpful.

zzzzz Thu 27-Oct-16 13:42:32

FROM WHAT not frankly m hmm

FlossieFrog Thu 27-Oct-16 15:09:57

Seem to have lost my reply. Did you do any other therapies zzzzz? Just wondering whether we should be pursuing eg speech and language therapy or trying to do more ourselves. DD absorbs stuff really quickly, I feel like we just need to give her more opportunities to practice. So play dates with peers or slightly older would be a better use of time than therapy with an adult. The psychologist said we didn't need to increase therapy hours so a bit confused now.

zzzzz Thu 27-Oct-16 17:29:39

Im on a phone, but we did music therapy (fun and relaxing), salt (I think little impact but good for me as therapist was very helpful), swimming lessons (fabulous stick to toddler classes if you can as they are all about group play), riding (great at local stables less so at RDA 😮)....

This board is the best source of info and support in the U.K. IMO.

If you need to get your dx recognised in the U.K. As assessment here takes years in many areas.

Do you have dentists and opticians set up?

FlossieFrog Thu 27-Oct-16 18:28:09

I think our Dx is valid and don't think we need another over here. I haven't had any issues from pre-school or GP about it. Thanks for letting me know what you have done, I think DD would really benefit from spending more time out and about than cooped up at home and I might make some friends too. I'd much rather stay at home than put myself through the stress of getting out and meeting people, although I mostly enjoy it when I do. I have to keep reminding myself that if I put the effort in DD could end up not feeling like I do about social/public situations. I sometimes wonder if I am on the spectrum.

I should try to find some swimming lessons, as we did that previously and DD enjoyed it, I just want her to be free from colds before we commit to anything!

I spoke to my optician and they said I need to ask the GP to refer DD to eye dept at hospital (we know she is shortsighted, just haven't managed a full eye test). The last optician we saw overseas was supposed to be an expert with children but ended up frustrated and recommended she have a general anaesthetic in order to have an eye test. Seems a bit extreme just for an eye test.

I need to find an NHS dentist - it's still on my to do list. I'm not sure if there is an easy way of finding one who will be gentle and patient.

Thanks again, you've helped me to feel a bit less overwhelmed and given me some actions to take.

MeirAya Thu 27-Oct-16 19:18:24

Don't worry- the hospital eye department won't do a GA! It's mostlt just because (in theory) they're more experienced, less busy and better set up for preschoolers and dc with SEN

At worst, they might put some drops in and work out her acuity by shining a light in to see the back of her eye.

Personally I'd try a different optician though. Preferably a small, independently owned one. Opticians don't get funded well for a standard dc eye test, and so the multiples/ more business- orientated ones can only allocate so long above a standard appointment before they give up.

A little shop can just tell you 'Thursday 9am is always very quiet, keep popping in till she gets used to us'

MeirAya Thu 27-Oct-16 19:21:09

Same advice for dentists- plus if you register the whole family, they can check the rest of you over in record time, and then spend ages letting Dd get comfy there.

zzzzz Thu 27-Oct-16 19:54:39

I'd
Be wary of dentists "taking lots of time to get dc used to it", for us that nonsense went on for a couple of years before I got cross fell out with the dentist and got the GP to refer us to the community dentist. Ds DID need GA because he needed fillings and he can't sit through that. He
Now has flouride coating and his dips bonded (laymans
Terms!) and a much better chance of keeping his teeth. He could have avoided pain and cavities with better more appropriate care. angry

Sausagepickle123 Thu 27-Oct-16 20:00:24

Sounds to me like your therapist needs to spend more time "pairing" to ensure compliance and time at the table (our programme involves some (but by no means all) time at a table). When our tutors have had non compliant behaviour they've just gone back to lowering demands and pairing until everyone is ready. Maybe speak to your consultant?
And as pp say lots of fun to be had doing other things! When my son was at pre school he did swimming, a ball skills class, had some play dates and had some 1:1 at pre school to help with social skills.

zzzzz Thu 27-Oct-16 20:14:11

Have you thought about school?

FlossieFrog Thu 27-Oct-16 20:16:48

Thanks all. I'm hoping that the time we've put in preparing her for opticians and dentists will help. She loves putting our glasses on and has the peppa and Charlie & Lola books about glasses. We also happened upon a toy dentist kit, which she enjoys, so fingers crossed the real thing will be less scary. She's also older and generally more sociable than when we tried the eye test previously.

We're wondering whether to speak to our team overseas as well as the supervisor of the current therapist. Just don't want the to waste time and money if we'd be better directing it elsewhere.

Right, I'd better go and find out what the bangs upstairs are about. DD was declining to go to bed so I left her to it!

FlossieFrog Thu 27-Oct-16 20:21:56

zzzzz - we're just in the process of looking at schools at the moment. We think mainstream is definitely the way to go for DD. We have what appears to be a lovely school up the road, and will go visit that next week. We are in a rural area surrounded by CofE schools with small intakes of 13-20 for the 3 schools we're likely to apply for. I spoke to the head of one school who was very helpful and encouraged me to speak to the SenCo of whatever school we decide upon. We want a small school where she can get enough attention and not get lost in the crowd. Her preschool overseas had a class of 15 and she came on amazingly well there. They were wonderful at nurturing the kids whatever their individual needs (there were other SEN kids there).

Is there anything else we should be considering?

zzzzz Thu 27-Oct-16 23:57:49

We found our best school for primary was a tiny rural school. They had several year groups to a teacher which helped and another child with quite significant need. It was also secure and quiet smile
I would want to talk to the SENCO at ALL the schools long before I chose which one and I would go with the school who genuinely wanted my child there and embraced not endured inclusion. My ds is quite far from the stereo type of Autism so direct experience wasn't needed (ds is highly motivated by people friendly and over emotional).
If you think your child is going to need 1 to 1 support in school then you need to think about applying for an EHCP and when to start that process.

Mumoftwinsandanother Sun 30-Oct-16 15:12:32

Your dd sounds a lot like my ds (just turned 4). they were diagnosed at the same time and he has also come on so well with a small amount of ABA. SALT not terribly helpful and I am mainly going to concentrate on playdates/classes from now on until school starts. I would ditch the therapist, we have minimal table time in our ABA programme (only for writing/reading/fluency type activities and only when he is in the mood). You need to try a consultant like Sky therapies or Child autism UK, I'm sure most of the good ones have moved away from table activities now (although we saw a number including top BCBA who were still advocating this approach and tbh this put me off them). Also you don't need lots of therapy hours especially for a very hf child, you just need to understand the programmes yourself and apply the principles into everyday life a bit (e.g. when having a bath you can talk about prepositions etc). It doesn't need to be relegated to the house with an expensive therapist.

FlossieFrog Sun 30-Oct-16 15:40:47

Thanks so much. We had such an amazing therapist previously that we were a bit worried we're judging the new one harshly IYSWIM. It's really helpful to get parent views on this, particularly from what sounds like a similar situation.

I think we're decided we'll ditch the therapist, so I'll look up the therapists you suggest. Thanks again.

Mumoftwinsandanother Tue 01-Nov-16 00:07:47

Hope you have some luck with this Flossie

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