Autism Assessment stressful and hard, feeling guilt

[pennydrew]

Anyone else found the autism assessment period difficult? We have waited so long for this our child is now a teen and the meeting today was really difficult. It took almost 4 hours and focussed on when our child was 4-5 years of age, 13 years ago! I could not remember all the specific things they were asking. We suspect aspergers so I felt the whole thing was geared towards the other end of the spectrum. I felt like I must be so useless not to have noticed all the things they were asking about. We are so certain she is on the spectrum, to us and those that know her it is obvious, and clearly causing issues...some serious... I hope I haven't messed it up by not being able to recall as much as they needed. I am so exhausted from it. I have endometriosis and had a bad period so I was sitting there in pain the whole time and trying my best! My husband was there but he is autistic and not great at talking... urgh! we had to wait so long that so much time has passed we can't recall exact details from more than a decade ago! Why is this so complicated.

That's the ADI-R assessment.
A bit of info here www.appliedbehavioranalysisedu.org/what-is-adi-r-and-how-does-it-work/

I hadn't realised they'd do that one when I asked for an NHS assessment for my relative who was at the time early twenties and who had to sit through it whilst I answered all the questions.
I found it very difficult to remember that far back, but did have assessments for other things, so took those along too.
From a combination of those, it was put to a team and a dx was given for autism in a report which also gave the scores.

If the ADI-R does not give a clear result for a dx, then they may well follow up with other evaluation tests.

This explains the diagnostics better than me waffling on
www.autism.org.uk/about/diagnosis/criteria-changes.aspx

Thank you so much! Really appreciate it. I have to search around for information on my own, so thank you :)

You're welcome Pennydrew

We're all left to fend for ourselves, often without a supportive family or partner, that's what makes things so difficult. The information is out there, but there's so much dreck to plough (like the 'cures' for autism etc.) through that we can become confused, especially at the start of the process which can seem so complicated and the hours of questions seem almost irrelevant to the present-day situation. They're not but no-one seems to explain the 'why' of the questions asked at dx.

I've found this board, SNChat and SNChildren really helpful, the amount of knowledge is fantastic and people are so willing to help.

Have a read through now on how parents feel when the dx arrives, then you'll understand it's okay to feel like you've had a huge shock, even if you're expecting it.

If it's a positive dx, the main thing is to put it across that your dd hasn't changed because of the dx, she's herself, she's always been herself and will always be herself. Dx focuses a lot on the negatives, but there are a lot of positives in there too.
Does this help to explain the spectrum in a more positive way ?
the-art-of-autism.com/understanding-the-spectrum-a-comic-strip-explanation/

Hope you get the results soon, the waiting can seem endless.

Thanks again :) my husband has Aspergers and I really embrace neuro diversity, so I’m ok with an autism diagnosis ( I’m pretty certain as is my DD ) it’s not getting the correct diagnosis because of our inability to remember back so far that worries me. As she is really really bright, and is an actress since young, it’s a harder assessment I think. The GP was hopeless, we have been waiting years! I find it amazing that they don’t check up on us as we’ve been in when she has some pretty serious mental health issues. They just told us to go through our school or go to A & E in a crisis. That’s it! Thanks again for all your help.

Sadly some GPs are not clued-up on autism, particularly not in the way it presents in women and girls. For starters, as her Dad has Asperger's that should have flagged up as "strong possibility that any offspring may be on the spectrum" because that's where current thinking on autism is.

I'll cross my fingers that the ADI-R results do give you the dx.
If it doesn't come back as ASC which was my relative's dx after the ADI-R, all is not lost. You can request further investigation or you could look at an independent assessment by someone the NHS accepts. The Lorna Wing Centre is the gold standard but they are renowned for diagnosing autism in women.

Thank you again, I’ll bear this in mind.