has anyone else gone through ASD assessment and not got a dx....what next?

(9 Posts)
toastymarshmallow Tue 17-Jan-17 18:08:31

DD1 is almost 8. We went through ASD assessment. I was told to prepare for a dx, but at the final appointment I was told that they couldn't diagnose and they will review in a year.

They commented that she processes things slowly at times, and that she struggled to label emotions. But she was very good at conversation, and eye contact, and she was able to say the qualities of a good friend. (That is no surprise as I have had many conversations about how to be a good friend.)

I am to research ways to help her myself. So yeah, I will just google it I guess. hmm

I have felt a bit numb since tbh and I don't know where to go next. She has always been good at presenting herself. But the effort tires her out and she comes home and blows up. She has also always been OK with adults, but when with children the cracks show.

I think at one point the consultant said if she had ASD she wouldn't be able to present well at all, while her colleague was saying they understand that girls can mimic and mask their issues. Clear as mud. confused

I just don't know what to do. I am doing all this stuff to help her and I feel like if she was NT then I wouldn't need to do so much.

Is there anything else that it could be that I have overlooked? She already has a dx of anxiety but that is managed by me, as usual. Someone mentioned an attachment disorder, but I am not sure that fits. Yes some of the behaviour fits, but she has always been well cared for and loved.

She has improved massively in the last year, but at times it gets bad again and I just can't spend the rest of my life constantly trying to figure this out alone.

OP’s posts: |
frazzledbutcalm Tue 17-Jan-17 19:10:46

I have dd2 dx with asd.

Dd1 aged 16 didn't get dx as she can get a bus by herself and goes shopping alone. Then in same breath we were told if dd had been through system when she was 6-7 she'd have received asd dx! angry confused doesn't come into it.
Ds2 aged 11 didn't get dx as he's recently started seeing friends outside ... he did this twice.

I'm still working out what to do, how to proceed. Think we'll probably go private.

Hope you can work things out ... smile

tartanterror Tue 17-Jan-17 21:09:29

What part of the country are you in? Parents near me have asked for second opinions from GOSH for their DDs - and got diagnoses.

In our post diagnosis group there was a couple whose son got a diagnosis on their 4th attempt. It took so long as he presents well and masks at school.

Persist and if the second opinion isn't forthcoming spend the next 12 months gathering evidence to make it easy for them to say yes next time. Learn about ASD. Keep a diary to record examples, make films, get copies of any reports or letters from any professional you have seen. Record anything anyone at school/clubs etc says. Describe how your home life is and all the things you do (probably without realising) to keep life going along.

There was a mum in our post diagnosis group that had a borderline diagnosis "traits of ASD". Going on the course helped her identify useful examples to provide when her DS has a follow up. Maybe your consultant would be prepared to refer you on a course to help between now and your follow up next year?

If it's any consolation a diagnosis doesn't change too much. It will still be for you to manage - albeit with less doubt. Good luck

toastymarshmallow Tue 17-Jan-17 23:08:36

Thanks for replies.

I feel like I have already been doing a lot of what you have said. I have held the school to account on things they said (they keep saying there are issues and then backtracking) and I have outlined pretty extensively the things I am doing at home. I was already doing a lot of things before the family support worker became involved. At the parent assessment the HCP told me a dx was likely and that they were aware of how much girls in particular can mask and do OK in school etc. But it seems like they have given more weight to a random hour when DD was in good spirits rather than the rest of our lives. If they had seen her at the last appointment (for her anxiety) when she wouldn't look at the consultant or answer any questions, maybe they would think differently. It also feels like my work with her over the past year has got her to the point where she can make eye contact, describe emotions (though not label them) and say what the qualities of a good friend are). She is very bright and her language has always been advanced. These factors seem to be carrying her through life just under the surface.

Her father wants no more involvement. At one point they did offer to do a school observation now and he shot that down. She spends so little time with him that she can keep it going, then explodes when she gets home. So he doesn't see the extent of it, therefore it must not exist, or it is my fault because it only happens here...everything is my fault.

I am worried about her future but I feel stuck. He has already said that he thinks I am just making it up and refusing to accept what they said because it "doesn't suit me".

I know that nothing would change, but at least I wouldn't feel like a crazy person and she would have easier access to support should she need it.

OP’s posts: |
zzzzz Wed 18-Jan-17 00:44:49

Message withdrawn at poster's request.

KOKOagainandagain Wed 18-Jan-17 11:07:07

The paed initially provisionally dx 'most likely' ASD but then he 'passed' the ADOS 8 month's later. Access to some support was dx dependent rather than need dependant (i.e. autism outreach). He had been in the system since age 3 (6 years). I asked the GP to refer to GOSH for a second opinion as we had 'exhausted local expertise'. Referral was accepted and 4 visits later, DISCO, ADOS, Camhs, SALT, OT, cognitive assessment, executive functioning and sensory assessment, hours of questionnaire filled in by parents and school he was diagnosed ASD. The whole process took about a year.

Alternatively, you could get a DISCO carried out by e.g. Margo Sharp who is a SALT authorised to diagnose and co-author of the communication checklist with Lorna Wing and particularly recommended for girls. She is in Birmingham but will travel. She is not cheap but very good. She also works for the NHS and I have had no problem having her sole diagnosis for DS1 (never had any formal assessment using ADOS) accepted by the NHS.

ZanyMobster Wed 18-Jan-17 22:09:25

This really worries me. We had our first meeting regarding DS2 today. He has lots of sensory issues plus other typical behaviours that point to ASD. The person we met with at CAMHS today said at the meeting held believes that he is on the spectrum and shows lots of symptoms so now we will be going through formal assessment (neuro something?). I didn't really consider we may not get a dx after him seeming so sure that he is on the spectrum.

The way he explained to me though is that they are now able to dx that a child presents symptoms or shows signs of various disorders they can dx in that way rather than saying that they have aspergers or something.

At the appointment DS was nervous so presented symptoms to a fairly heightened extent. I think when they assess at school they won't see this in the same way as he's in his normal routine and very comfortable so I also wonder if they will say he copes too well there. His major problems at school are less regular than at home.

Melawati Wed 18-Jan-17 22:26:19

I think one of the issues is that a DC can have lots of traits, and even be quite severely affected by them, without meeting all the criteria across the triad of impairments that are required for a dx of ASD.
This makes it very tricky in LAs where having a dx unlocks access to support, when really that support should be based on need, not dx.
As they are saying they will reassess in a year I would sit tight and wait it out, keeping a diary and gathering evidence as you go. Bright girls seem to be harder to dx when they are young, as they are more able to manage to get by with rote learning and mimicking. As they get older, the gap between ASD girls and typically developing girls really opens up - in my experience in the later primary years - and the differences become more pronounced and harder to disguise.

Waitingforsleep Sat 21-Jan-17 20:22:12

We have been through it twice now and no dx however being seen again for therapy and now camhs are saying they think after seeing her regularly that I'm right and they missed something!
It's just an awful soul destroying process

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