Why run ADOS when we already have a private diagnosis?

Greystoner

I can't get a straight answer from Early Intervention about this. We already have a private diagnosis of ASD/Aspergers, and child is supposed to be getting help with anxiety. Instead we are getting loads of tests.

Any ideas? person we got diagnosis from says he has no idea why they would do an ADOS.

Thanks in advance.

augusta24

Greystoner wrote: »

I can't get a straight answer from Early Intervention about this. We already have a private diagnosis of ASD/Aspergers, and child is supposed to be getting help with anxiety. Instead we are getting loads of tests.

Any ideas? person we got diagnosis from says he has no idea why they would do an ADOS.

Thanks in advance.

How did you get your private diagnosis? How recent is it? How detailed is the report they gave u? Could be that the EI team want to get a comprehensive baseline on all areas so they can measure change from then on... Could also be that your private psych hasn't provided enough detail about the child so they need more detail?.... Might also be just protocol there...

SligoQueries

Because E.I. want to make their own, (extremely slow), diagnosis. We have a private diagnosis from Prof. Michael Fitzgerald of ASD, ADHD, and ODD for our 4 year old. We did an ADOS with E.I., our son scored a zero on each part of the test, "showed completely no signs of Autism", it was absolutely ridiculous. The ADOS test seems geared towards severe Autism and lack of eye contact, and not geared towards high-functioning Autism or Asperger's. In the report from the ADOS they completely ignored any small, Autistic-like things my son did, and even said he said a three word sentence, which he did not. We're still waiting to see the video of him supposedly saying it.

We've been with E.I. for two years, with a review every six months, and every review when we talk about a diagnosis from them, they say, "Well, you know, we need more time...another six months", blah blah. Useless.

"Early" Intervention? Yeah right, you're lucky to get a diagnosis from them for Autism by the age of 6 or 7. Asperger's? The paediatrician that did our ADOS test even admitted that it's "hard" for them to diagnose Asperger's before the teenage years! I pointed out that Asperger's can be diagnosed as young as the toddler years, and she just repeated, "Umm, yeah...it's difficult."

Before anyone points it out, I'm aware of DSM-V, and the diagnosis of Asperger's.

Anyways, screw the E.I. and their misguided, government, cover-their-asses, opinions. You have your private diagnosis, and they can never take that away from you.

mohawk

Greystoner wrote: »

I can't get a straight answer from Early Intervention about this. We already have a private diagnosis of ASD/Aspergers, and child is supposed to be getting help with anxiety. Instead we are getting loads of tests.

Any ideas? person we got diagnosis from says he has no idea why they would do an ADOS.

Thanks in advance.

It's standard practice from what I can see from other parents who went private for diagnosis. If you want your child in early intervention process then you play by their rules.

The multidisciplinary team is the right idea as many kids with autism need to see more then one type of specialist.
The process is far too slow though.

Obliq

Greystoner wrote: »

Any ideas? person we got diagnosis from says he has no idea why they would do an ADOS.

Thanks in advance.

Yes, I have some ideas based on my experience. My youngest is 12 and set to move on to secondary this year. Since his birth, I have been concerned about his development, emotionally and behaviourally, but it has taken until this year for the HSE children's services to assess him for ASD. He has been labelled with an SEBD (severe emotional and behavioural disorder) within the education system and has a SNA for the last 4 years, has been referred through many departments within the HSE in order to get to this point. They will leave off assessing for ASD until the last minute, as SEBD is considered something that could be solely attributed to the child's environment (upbringing/parent's relationship) having severely impacted on their emotional development, and they wait to see if they will "grow out of it". Aspergers is incredibly difficult to differentiate with SEBD if your child is only borderline.

I am banging this same wall with my head for the last 8 years now, and he is finally being assessed through the system (the ASD team are so under pressure that he wouldn't have got past the screening process unless they thought there was a possibility of the diagnosis changing from SEBD)

The basic reason I did not go down the road of getting a private assessment (as well as not being able to afford one) is that anyone with a child exhibiting severe emotional and behavioural issues can pay over money and come out with a diagnosis of ASD if they want to, but this will NOT and I repeat NOT wash with the dept. of education when it comes to your child getting help through the school system. And it's BECAUSE you can pay to get the diagnosis you want - there is no such screening process as I described above if you go private. The Dept of Ed will only accept HSE approved diagnosis for your son to get the support he needs in school, and your child will possibly acquire a number of "labels" before you get the actual theraputic assistance from the state. My son has still had no such therapy, except what I have managed to afford privately and one 5 week emotional development course with the HSE.

Best of luck, and I mean that. You'd be doing yourself a favour to get in touch with some ASD support groups in your area as they can help with your concerns. I live out in the sticks, and until my son turned 10 there wasn't a child psychologist closer than 2 hrs drive away for him. Start arming yourself for a long, long road of advocacy......

Nanazolie

SligoQueries wrote: »

Because E.I. want to make their own, (extremely slow), diagnosis. We have a private diagnosis from Prof. Michael Fitzgerald of ASD, ADHD, and ODD for our 4 year old. We did an ADOS with E.I., our son scored a zero on each part of the test, "showed completely no signs of Autism", it was absolutely ridiculous. The ADOS test seems geared towards severe Autism and lack of eye contact, and not geared towards high-functioning Autism or Asperger's.

Our report clearly stated that the ADOS results were a disagnosis of high functioning autism.

BUT.... to be honest, I'm getting seriously fed up with the HSE. We thought great, now we have a diagnosis, it will open doors. Sure, we did get on an Early Bird program, but that's only for the parents and the services that were 'urgently' recommended for our child are not provided at the moment. There isn't even a waiting list, they are just not available. So what's the point? To get the satisfaction of saying 'I told you so' to people who always dismissed your concerns? To wreck your head getting so much info on the Net that you can't even process it?

A friend of mine was offered 4 hours of speech therapy for a 6 years old who is non verbal. A magic wand and some holly water would be more useful

We are now looking for private OT sessions because our son's behaviour has greatly deteriorated in the last few months. That's all our savings gone (I should thank him: we can never go out anywhere, so at least we didn't spend that money in restaurants or holidays...)

bisset

There are certain well known professionals in private practise who are rumoured to diagnose a very high proportion of children they see. I have been given to understand that these diagnoses are treated with a certain level of scepticism by practitioners in the public sector.