Adult autism diagnosis ADOS Module 4

[Drogonssmile]

As per title I've finally started my autism assessment 13 months after being referred. Had my initial assessment regarding development and my past etc over the phone and have my ADOS 4 via video link on Tuesday. Has anyone got any experience of this?

I'm terrified. Particularly as I am a 38 year old female who by observation and learning has learnt to mask and "fake it til I make it" so much that I am convinced I won't get a diagnosis (I am 100% convinced I'm autistic). I did ask the MHP whether the fact that I am female will be taken into account and he said it would so I guess I just have to trust them, being the professionals!! I'd just be gutted if I'm not diagnosed and wonder if anyone has any words of wisdom or a hand hold?

If I understand it, sensory issues still aren't part of the diagnosis of autism, only the Triad of communication impairments - even though the sensory aspects are often the most disabling for people.

I haven't been formally assessed but did participate in some research where they were comparing people treated by GPs for depression, people in prison, and other groups, to see if autism was a factor in mental health and imprisonment rates (yes, apparently). The interview wouldn't have picked up half the diagnosed autistics I know, who know the rules of how to read a picture book to a small child because they've read about learning and psychology...

I suppose it's possible that my children, husband, almost all my friends etc could be autistic and me not, but it's not very likely. Will see if I ever reach the top of the NHS waiting list...

Thanks all for your experiences and inputs. I have a lot of thinking to do. Those of my family who knew I was having the assessment are all quite surprised at the outcome. I'll definitely leave it a while and let things settle.

Did they just do the ados or did they also do a developmental interview (this would have been with someone who knew you as a child)? The developmental interview may well be the DISCO and should for best practice be done by someone who doesn’t know you and you would not typically be present for it.

The information from both would be taken into account and whilst the ADOS is less good at spotting females with autism the developmental stuff is much better at picking it up?

The Lorna Wing Centre for Autism is apparently very good for women and girls and you can self-refer. I saw Sarah Hendrickx in Brighton in 2014 who is a renowned author on autism in women and girls. She provides assessments but can't give you an NHS diagnosis as she isn't a clinical psychologist. She has a 100% validation rate though when clients have subsequently sought an NHS diagnosis. 2 years ago I was diagnosed by the North Yorkshire NHS Adult Autism and ADHD Assessment service, which didn't exist when I was initially assessed 12 years ago.

I just read the thread and wanted to recommend Spectrum North West if you consider a private diagnosis in the future. They're specialists in diagnosing girls and women. My DD got her diagnosis from them and if money wasn't so tight at the moment I'd go back for myself.

Thank you @PetCheetah and @MattBerrysHair I've heard of Sarah Hendrickx and the Lorna Wing Centre. Will look into Spectrum North West. I'm actually in Bolton so in the right area!

@Changeisneeded they did the ADI-R with my mum. I didn't have developmental delay but I've always had sensory problems, labelled as shy, OCD, special interests,
difficulty making and keeping friends and very early on learned to mask/copy other people. My mum didn't know a lot of these. She was a single mum who worked a lot and I was with my gran most of the time I wasn't at school. My gran died when I was 18 though.

That makes it really difficult and is something I would check before getting a second opinion because the developmental history is often the bit that leads to the diagnosis in women and it’s really complicated when it’s not possible to gain - that said it’s not impossible to diagnose without. I definitely agree with the recommendations of seeing if the lorna wing centre if you want to pursue things.

Thank you @Changeisneeded and everyone who has commented and shared they're experiences. It's really given me a lot to consider

*Their. Spelling and grammar is going to pot now!