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DS just diagnosed with ASD, what to do next?

34 replies

firsttimer08 · 08/01/2010 16:21

ok, i had posted a couple of weeks earlier and as my anxiety did not reduce and we managed to get an appointment with daphne keen too - we have now got a 'label' for ds (nearly 15 months now). he has a 'working' diagnosis of asd (as there were some positives in his favour) and while only time will tell as all the posters here have suggested to me earlier (on how he fares), we want to get some early intervention started.

She mentioned getting specialist salt help, try hanen and then working on his play routines (so he can go through the whole pretend play and learn to play with his toys etc).I asked about ABA-VB and she seemed to think it was more suited towards improving behavioural issues.

Areas of concern/ things we would like the therapy to help ds with are:

  • no/little receptive language,
  • no words,
  • does not share much attention,
  • little interest in toys except for putting things in and out of the box and throwing things down the stairs (which we quite enjoy as it is good exercise going up and down collecting things ).
  • He is fairly warm at the moment, but i feel (maybe paranoia) that he is getting a little distance. Like few days when i've come home from work, he's been excited to see me and then walked off.

I'd like to get some input from experienced mnnetters on potential therapies we could explore. I had already got in touch with floortime and they looked v. interesting, but more I read it seems there is less evidence backing it up than ABA. But I am surprised as to why the paed did not think ABA-VB would be the way to go given the positive experience of many on this forum too.

Also i came across postings by asdx2 - i cannot contact you, but would be grateful for your reply. You mentioned you started ABA with your 17month old dd and had quite successful results. What areas do you think the aba worked on and what aba did you use?

finally, i work full time is it really possible to run an ABA-VB program whilst full-time at work. Can I find tutors to also come around on saturdays, so I can work on sundays myself? I ask because I am about to change jobs for a better paying one. If I do take up that job, I would be able to afford private treatment and therapies, but i'll have to work full-time and then a new place would be less flexible/cognizant of my problems. At my current job, i could easily move to working only 4 days a week, though that would mean even less money for the therapies.

Thank you all in advance for your help.

OP posts:
mum2fredandpudding · 12/01/2010 16:59

hi firsttimer

i posted on your other thread (read this after) and not read through all properly (2 kids and doing ABA... v little time online!)

bt starlight is absolutely right when she says ABA is a methodology not a curriculum. If they tell you ou have to do 40hours a week, they are lying. You dowhat you can manage to do. Also - I work part time (from home) and often leave my DS with nursery/his beloved tutors - it woudl be tough but im sur eyou could work full-timeand do ABA.

i am in SE London

if you are a reader (like me) the best book on ABA i have come across is by Robert Schramm called Educate Towards Recovery. It explains EVERYTHING and is easily accessable (though it is a VB book - but dont let people confuse you - the different approaches re at heart the same - just the manner nad techniques are diffeent)

ps. let me tell you that the basket you are choosingis an excellent basket. People who say it isnt ... well.... im willing to bet that on the whole they are not mothers of an asd child and have little honest exposure to an ABA program and are reciting old nad staid mantras....

jabberwocky · 12/01/2010 18:25

I know someone who is doing Floortime with good success. Ds1's various stims calmed down a lot after going dairy-free although he also had issues wwith constipation so it was a no-brainer for us to give it a go.

nappyaddict mentioned MDA. I'm not sure what it is though.

nappyaddict · 13/01/2010 04:32

Sorry it's short for multi-disciplinary assessment.

firsttimer08 · 13/01/2010 09:01

yeah nappy addict, we are going to go for an MDA in a months time as well. Just want to understand more on how far his speech is developed, other sensory issues etc. We are still awaiting the peadatrician's report, but she seemed to suggest as well that we should see SALT etc separately to get more details on his development.

OP posts:
nappyaddict · 13/01/2010 09:31

SALT will assist CP on ASD diagnosis as well so try to see both as much as possible.

firsttimer08 · 14/01/2010 15:07

mum2fredandpudding thanks !! I hope working and aba can somehow work out. I also live in SE London - i'm just going to msg you, as I'm quite keen to find out about how to find tutors nearby !!

thanks for the reference to the book - another one to order on amazon then !

OP posts:
snowpoint · 14/01/2010 20:40

Not much to add, but wow, are you on the ball with this. Where we live, they rarely dx before 5 - it's very frustrating when everyhing you read tells you to get the earliest dx possible for the best prognosis.

What I can say, is try not to leap a million steps ahead. Your ds is still so very young that so much can and will change. I scared myself silly by reading worst case stories, and my ds is nothing like the child I expected him to be. Your ds is still your unique little boy, label or no label.

herenow · 27/01/2010 08:06

Hi

We have just moved here from abroad and I am having trouble finding help for my 5 year old son. We put him in a Seiner school but I am no longer sure that was the right thing to do. We got a late diagnisis of PDD Nos as no one really spoke English so were unaware of the comunication problems.
We are in Brighton, I know I need to get my son some extra help as he is not getting it in school but I do not know where I can get it and feel like I am running out of time.
Any advise would be very much apriaciated.

herenow · 27/01/2010 08:08

Hi

We have just moved here from abroad and I am having trouble finding help for my 5 year old son. We put him in a Seiner school but I am no longer sure that was the right thing to do. We got a late diagnisis of PDD Nos as no one really spoke English so were unaware of the comunication problems.
We are in Brighton, I know I need to get my son some extra help as he is not getting it in school but I do not know where I can get it and feel like I am running out of time.
Any advise would be very much apriaciated

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