update on ds1... and more questions!

[JoMaman]

Hi there,
I posted about ds1 6 months ago here: www.mumsnet.com/Talk/special_needs/893667-any-advice-on-ds1-39-s-development-delay-sorry-its
and I just wanted to update you on what has happened and thank those who pointed me in the right directions (especially PECS and BIBIC - invaluable advice)... also hoping for further guidance if anyone can be bothered to read this to the end!

So ds1 was 2 when I posted, and I had concerns about ASD. In March we saw a private paed but she said she thought GDD was the main problem and the ASD traits were symptomatic of this... In mid June we had the NHS ASD assessment, which confirmed he has 'autism', he ticked all of the boxes except one. One thing I found odd was that they said it was 'autism' as opposed to being on the autistic spectrum. I asked her to clarify and she made it seem like they were two separate things?? Anyway, having reflected on it for a month, I think she might have been saying he has 'classic autism', i.e. was like it from birth, with no regression of skills. I will wait to get the written report and call her if it still doesn't make sense.

I was almost relieved at the dx, although very sad too, but I felt until then I was battling it on my own and the more we were fobbed off the more time was passing where ds1 wasn't getting the help he needs. Now we have the dx, dh is on side and I feel like we are finally being proactive. We are trying to set up an ABA programme and have changed to GFCF diet and are seeing biomedical therapists about further tests/supplements. We've also just been to BIBIC, who gave us a fantastic understanding of his sensory needs and a programme to carry out. Its all very daunting, especially when you realise there is no one 'miracle cure' out there and all you have to do is take lots of small positive steps every day to try to improve things for him, and it will take a long time to even see if anything has worked. In that vein I am thinking about a few additional therapies, and was just wondering if anyone had any positive experiences or recommendations? They are:

a) vision therapy. I have skimmed kaplan's book and as ds1 has vision probs and strabismus I thought it might be worth investigating - does anyone know a practitioner in London?

b) cranial oesteopathy. Can anyone recommend one in the london area who deals specifically with ASD children?

c) PROMPT speech therapy www.promptinstitute.com/ - Has anyone tried it and is it appropriate for a 2.5yr old?

thanks in advance

Hi JoMaman, i'm glad you have managed to get a dx so quickly. My youngest dd was diagnosed when she was 3, we were given a dx of Autism and told that we will have to wait a while to find out where she is on the spectrum. Since being diagnosed dd has attended a sn nursery where she has been getting ABA, speech therapy, OT and they started using PECS with her straight away. The one therapy that has made a huge difference to dd2 is Music therapy, she gets this once a week at nursery. Before she started music therapy she found it very stressful being around noise (would hold her ears), she hated it when people sang in small groups and she was non-verbal. PECS gave her a way to communicate and Music therapy gave her the confidence to use her voice. She started singing before talking, now she is 4 and is talking, singing, reading and writing.

I'm sorry i cant offer advice on the therapies you mention but i can highly recommend music therapy.

thanks Marne, I will look into music therapy. I've often wondered about it as ds1 loves music and it does have quite a powerful effect on him (gets him to calm down during a meltdown, gets him to eat his food when he is refusing it, gets him to settle down at bedtime).

Its worth a shot, dd2 now gets therapy from a music student that her nursery has employed as her original therapist changed his days at the nursery to a day dd wasn't there. You may be able to find a student that could do it. Dd2 now plays music on anything she can lay her hands on, i often find her lining her toys up and hitting them with a spoon, when she's anxious she asks to sing a song.

We also do floor time at home.

thanks TG, I see what you are saying about devoting the most attention to the therapies more likely to make a difference initially... I think our ABA prog will be up and running in a few weeks so I will see how that goes. The diet wasn't as hard as I thought it would be to implement and it had a pretty immediate effect on his bowels (!) so I'm going to keep going with it for now, but one therapist recommended the special carb diet which I think would be impossible to implement at the mo, so am going to put that idea on the back burner for now.

I agree totally with marne. We have had music therapy in ds2's statement since it was drawn up aged 3 (he is now 14) he learned to speak by singing and it is especially crucial for him now to have an outlet as he is going through puberty. Adolescence is such a hard time even for NTs but for those with communication difficulties its even harder.

there is a book called music therapy for the autistic child by Alvin and Warwick which I would recommend (sorry dont know how to put those blue links in but the ISBN is 978-0-19-816276-6)Also Google the BSMT and ask them to send you some info and they will also tell you who is around in your area.

Yes to PECS too and makaton signing as an additional prompt, makaton have a good nursery rhyme video with Dave Benson Phillips but thats going back a bit. Lots of music in it, Not sure if it made it to DVD

Personally I would send his wee off to Paul Shattock's lot before going on the gfcf diet.

My DS has a classic autism dx and he did have regression. Professionals use these words interchangeably but my understanding is that he has the triad including delayed speech - whereas spectrum or Aspergers is sometimes used for those with bits of triad but no speech delay.
However it does not tell you much as although DS has classic autism we now know his IQ is normal - so some professionals would call him high functioning - even though his autism is quite severe eg his speech is very limited.
Sometimes people use high functioning to mean IQ and sometimes if a child has good speech so it is confusing.
I would not worry too much. It means he has ticks in all three areas and his speech is affected so is autism rather than aspergers - but he could be mild, moderate or severe in each area. And he can improve - my DS was severe at dx but now a year on is more in moderate band.