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DD "passed" ADOS today...

(10 Posts)
strawberryshoes Fri 12-Dec-14 17:57:06

So, mixed feelings. She has not been diagnosed. Great! I don't want her to have autism, but really, I know she has something, so it just feels like we are no further forward knowing what, and I worry about the future with out a diagnosis under my belt to help open doors to extra support.

The school completely disagree with this decision. They provided a detailed report of her behaviours, sensory needs, specific delays in personal, social and emotional development (which is out of character with the rest of her developmental profile, which is all age appropriate) but because she performed beautifully on the assessment, she is "completely normal" and I should "go home and stop worrying".

Now, the school as I said are supportive, we have OT referral to produce a sensory diet, the Ed Psych has been out and made some suggestions for class room to help manage her, and she is has just started "time to talk" in the school to help her specifically with her social skills.

Do I need to fight to get back into the assessment process? Or because she is being supported in her current setting, do I leave it for a while until maybe the gap between her and her peers grows, and see if she can be assessed again?

I am just not sure!

She was so charming to the Dr, answered the questions about what is friendship, who are her friends, why, how can she be nice to them or upset them etc... she played imaginatively with and without the Dr, talked about the stories in terms of feelings, had great eye contact, followed all instructions, made jokes and showed empathy... but see her in a group of her peers and she stands out like a sore thumb. She has no idea how to play with people her own age. Tends to flap in their faces if they don't do what she wants them to do as soon as she asks. She also just wants to play with sand and water, mud and glue all day. Gets so easily distracted at school or at home if you ask her to do something. There are so many examples. All provided by the school in writing.

Why do things have to be hard? I can't even have wine as DD2 is breastfeeding like a newborn this week.

Ineedmorepatience Fri 12-Dec-14 18:18:03

Ados often doesnt pick up girls and it annoys the pants off me that Dr's are still relying on it even though many people have said that girls are being missed!

I would try to stay in the system and ask if your Dd can be assessed using the DISCO assessment. Also a decent SALT looking at higher level communication skills might be able to provide a report which points the boy orientated proffs in the right direction.

Its great that school are supportive, keep fighting it may take a little while yet!

Good luck flowers

autumnsmum Fri 12-Dec-14 18:29:19

To be fair not all profs are boy orientated , my daughter was diagnosed at two

Ineedmorepatience Fri 12-Dec-14 19:14:13

Sorry autumn generalisation but I think there are still many proffs who are missing girls!!

clairewitchproject Fri 12-Dec-14 22:01:05

I agree I work in an autism diagnostic team and ADOS doesn't seem that great for girls. I think you have to take the long view with girls and look at their actual friendship history in a macro soc comm way etc rather than trying to spot micro soc comm diffs within one conversation like you can with boys. My dsis has undiagnosed aspergers (diagnosed by me, lol) and you would never know in one conversation - in fact she does best with strangers or foreign people - many of her friends are expats in this country - because there is no sustained relationships with a stranger and the expats aren't fully embedde in UK culture and I think notice her idiosyncracies less. In terms of her life long friendships, I am in touch with 3 or 4 people from our boarding school - she with none at all, she fell out with each very intense friendship within about 18 months to 3 years or so. I do get cross when ADOS is assumed to be the be all and end all of autism diagnosis.

KeepOnKeepingOn1 Sat 13-Dec-14 07:36:16

You could ask the comm paeds to refer to Lorna wing - I think they now also take private. Also you can ask your GP to refer to GOSH for a second opinion. Phone NAS and they will send a list of where to go locally for diagnosis.

frazzledbutcalm Sun 14-Dec-14 22:19:29

Hi, what is involved in the ADOS assessment? We're waiting for dd's appointment to come through for it. She's finally being sent for one after being in the system for 2 years! hmm

mumsuz Mon 15-Dec-14 13:03:07

Strawberryshoes - how old is your DD? My dd didnt get a diagnosis first time (though she was given a diagnosis of social communication disorder). But I pushed for her not to be discharged from the child development centre. They will be keen to discharge you!

A year later (now aged 6) she has been given a diagnosis. I was lucky that second time round we saw a paediatrician who seemed to understand that girls often get missed and often end up getting a diagnosis much later. The paediatrician wrote a pretty compelling family history and included all my present concerns regarding her problems with peers and sensory issues etc.

Saying that, my DD's reciprocal speech is poor so she was scored on that (which sounds like it isnt the case for your dd) but her eye contact and imaginative play were both good.

The diagnosis hasnt changed our LEA's mind - they are still refusing to assess my DD - but our independent ed pysch thinks they will probably cave in at the last minute. I feel that the diagnosis will provide a better framework for getting her support. I always knew there was something despite a raft of professionals telling me for more than 3 years that my dd definitely could not be autistic!!

By the way, there are now some good books/articles on how ASD presents differently in girls.

Good luck with it all.

Handywoman Mon 15-Dec-14 22:21:14

My daughter passed an ADOS but had a compelling history borne out of years of intervention with SLT and copious reports (most commissioned privately at great £££ sadly) plus was on the books of the paediatrician for four years. Eventually diagnosed aged 8yo.

strawberryshoes Fri 19-Dec-14 11:02:48

Thank you for the replies, DD is 4, in reception (August born, so very young in the year).

We have already been dismissed from the Paed, but I imagine we will be gathering evidence (the Ed Psych regular reports and the OT reports too, to begin with as well as her class teacher observations) and then present them all for a referral back into the system in a year or 2.

I feel lucky that her teacher and the SENCO are so switched on and are at least putting things in place for her now, and not waiting for a diagnosis. It would be nice to be able to support them in return with a diagnosis that might attract more funding for the school (or is that not a thing?) as well.

I know that there is something different about her (probably HFA) it would have been nice to have it taken seriously by the Paed too.

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