Struggling with wait for ASD diagnosis

[nibsy]

Hi, We had an ADOS test for my son (aged 3.0) last week and I'm slowly going insane waiting for the outcome of this. We've been told that we need to wait for the outcome of a diagnostic interview with the paed which wont take place until June (was supposed to be April but they are very busy.....) before we know whether or not he will get a diagnosis. They did, however, say that he demonstrated ASD traits during the test. During the test he didnt respond to his name because he was engrossed in his play (which really shocked me), didnt give consistent eye contact to request and his imaginative / symbolic play was pretty poor.

While we wait for the dx I just dont know what to do! I've got a 6 week old DS to look after which gives me a break from the constant wondering and googling but I'm scared that time is ticking and I'm not helping my oldest son. His main difficulties are with his speech (lots of echolalia and pronoun confusion which I dont know how to help) and poor interation with other children at nursery.

I dont feel able to discuss with friends and my family yet so just looking for some support and any advice really.

Thanks for reading this.

in the meantime what i was advised to do is treat him as if he has ASD anyway, carry on now as if you have had the dx do read a lot buy a book like tony attwood their are others too, is getting any SALT yet ? as whatever the DX outcome he will be needing some at same time take time out to take a big deep breath ... its a lot to take in and you dont want to feel your neglecting your older DS so weekends comming set him some time separate with you from your other DS or perhaps have a day out if nice weather and try and relax, it is a very worrying , emotional time for the WHOLE family and affects all of you in one way or another so tonight have a glass of wine and takeaway and a lovely bath and put it all out of your mind for a few hours , it drives you mad with so much info and thoughts going through your head enough to drive you nuts , the day of the DX comes and you will feel like your grieving for a while but whatever happens your DS is YOUR ds he hasnt changed hes the same little man , you will love him no matter what. you do need someone to talk to if not family and friends because your not ready to discuss with them find out if their is a NAS or any local group of support for parents of children with AS /ASD in your area, our local SS had one where even if your DS doesnt attend the school anyone with a child with AS/ASD is welcome to join in for a coffee and chat and now and again they have "profeshionals" come in for advice too, good luck , it will be ok you know (((hugs))) HTH

are you getting speech and lang support?
Find a good support group and use it (where are you?)
I would strongly suggest buying the "more than words" book. Or even better get on a course if your PCT run on. (also known as hanen)
Treat him as if he has it, it wont do any harm.

He's the perfect age for some ABA! I'd find out all you can about it as that will give you a context for your expectations and demands.

Absolutely agree with everyone else. Assume he has ASD, and start to work out what interventions you want to do with him.

Because when they dx him in June, they still aren't going to provide the help you need :( You are going to have to do that.

I've just gone through this waiting between appointments and it's awful, I so sympathise with you. One thing I would flag up is that a diagnosis does't actually mean you'll get any help unless you fight for it!

The best thing I an suggest is to research all the different options, from ABA through to your local mainstream nursery provision so that you are armed and ready to go as soon as it does come through. If you feel you need to apply for a statement, it's based on NEED, not diagnosis. For instance my DS is only borderline but has a statement whereas several local Mums I know have the diagnosis but no statement. My lad has major sensory issues, theirs don't. Is there a nursery in the area with onsite SALT or and ASD specialism - get his name down for it no. Get in touch with the national autistic society to commence this quest.

Read on her as much as you can re different therapies etc that are available. One or two may jump off the page at you as being really relevant -if this is the case start pushing for it now! Go into that appointment knowing what referrals etc you want. I've ONLY just found out my lad needs access to Ocupational therapy and he's 6.5 - don't make my mistake.

Sadly the land of SEN is all about who has the greatest ability to ask the right questions and shout loudest re outcomes for our kids. I would that it wasn't like this, but it is. I'm quite a naturally passive person but am learning this lesson the hard way. Temple Grandin is a wonderful woman to google in regards to what her Mum did for her to inspire you.

Wow - thanks for these responses which are so helpful and motivating. I will def. find out about support groups as I really want to meet others in the same position and will research options. It helps to be actively doing something to help him and to pull myself out of denial.

We have had SALT since he was 20 months but its been irregular and not very helpful TBH. I'm trying to find someone privately with some ASD experience at the moment as thats where I really need some help. I've ordered More than Words so thanks for that.

Starlight - I'm interested in ABA but dont know where to start with this? Are there any websites you would recommend?

Thanks again.

Hi Nibsy,
These things take SO long...so frustrating for parents.
Good advice so far.
Social skills training is the one thing that makes the big difference to us according to the research (I'm on the autism spectrum myself).

As a parent you can help immediately by making all social skills stuff you do with your son really clear, really big and expressive, and really slow so he has time to see it and process it. Generalising, it takes us absolutely ages to see people properly and focus on what their faces and bodies are doing, so we miss all the body language that makes social stuff possible. Really exaggerate reactions (not anger though!). Use positive rewards that are instant and mean something to him personally.
Keep the environment round him as quiet and low-sensory as possible when he's tired - it helps minimise tantrums and shutdowns.

Don't try things like "mummy is sad that you've done that", because that's meaningless to a young child on the autism spectrum, even if they can understand the language. Use a toy or reward that he personally enjoys.

Enjoy the good things - we can often see and hear and sense three times more detail than other people can, and our world is absolutely fascinating once people 'tune into it'.

Phew...hope that helps very slightly...ask anything...

nibsy, is your ds verbal?

Yes - he is verbal but delayed. He mostly uses learnt phrases and echolalia. He will respond to me and his Dad but tends to blank anyone else.

if you can let us know the area you live im sure someone can recommend a support group nearby (I hope)

private SALT seems to be the way for most im afraid :( but least you'll get something.
Also recommend small behaviour mapping but that depends on his understanding really.

If your near herts, my dd2 goes to a private Autism preschool but there are only 3 in the UK :(

amberlight we are in the same position as the op with our dd 4. I often would love to spend a day inside dd brain to see what she is thinking and feeling so that I can help her better. What is ABA btw.

Applied Behavioural Analysis. It is a methodology for teaching children with autism the skills they need in life to be independent and to learn.

It might not be for you, but you absolutely MUST investigate it as an option.

oh thats good starlight who teaches it, how do you go about getting it so to speak

Yes, it is good, but it isn't easy to get. Most people have to fund it themselves, and schools (as ordered by Local Authorities often) are reluctant to work with it.

You'll need to find a behavioural analysist or someone that has a specialism in data-driven evidence-based practice wrt early intervention for autism.

You might want to look at Treehouse first, and then contact PEACH or UK Autism Partnership. There are cheaper ways of doing it than their way, but it is absolutely essential that you get properly regulated people helping you.

God I honestly could have written your posts almost word for word a year ago. Especially His main difficulties are with his speech (lots of echolalia and pronoun confusion which I dont know how to help) and poor interation with other children at nursery.

I absolutely agree with looking at ABA. We started this with ds before he was diagnosed (but we knew he was going to be). He was 3.5 when we started it. The progress has been immense. 6 months ago he couldn't tell you his name, how old he was, whether he was a boy or girl, whether he was 'me' or 'you'. Now we have full conversations which I dreamt about a year ago. (Ok, many of them are about toilets or traffic lights but still....) He joins in and spontaneously interacts with children at nursery - after 18 months of standing alone pouring sand or water.

Verbal Behaviour strand of ABA definitely recommended for children who are verbal but disordered/delayed language. Echolalia not a bad thing either as it shows there is a real desire to communicate with language, just need to be shown how to.

There are independent programme consultants - you find your own tutors, but the consultant/supervisor runs the prgoramme. Have a look on ABA-UK yahoo group, and VB group. Sean Rhodes, Duncan Fennemore and damn, whats her name, a woman in Scotland (?) who is very highly thought of - Ruth Glynn-something - double-barrelled - perhaps someone else can remember her name.

Horrible time for you but there is light at the end of the tunnel.

Have a look at Robert Schramm - Educate Towards Recovery (amazon do it).

Don't wait till results of ADOS if you feel there is a definite problem that isn't going to go away.

Bit late now but I will come back to this thread with more day-to-day things that help us.

Have a look at the Treehouse school site ("Ambitious About Autism" charity)too.

Thank you very much for all this information which I'm working through. I'm really grateful for your help and will let you know how I'm getting on !