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?

I've no words of wisdom but am interested to see if anyone else has, as I was referred in March. 4 year waiting list here though. I'm also concerned it won't be a true assessment due to being female and masking

Hopefully, it should be fine. It is now well known that girls & women with ASD present differently to men.
Good luck to you both, just remember that you are always you; and that is OK.
☺

Following with interest. Please come back and let us know how it goes, OP!

Thank you all. I was a bit nervous of posting but it's nice to know I'm not alone! I will definitely come back to update!!

I’m female and trying to get referred at the moment. I’m 39. I’ll be following this with interest.

Hi OP. I am mid-40s and had an online assessment last year. I had similar concerns to you re. being female and masking - and was indeed told I did not meet the criteria for a diagnosis. Knocked me for months - I wanted there to be a reason I found stuff hard etc, and didn’t get it. There was no follow up - just “nope, it’s not this”. I felt the ADOS seemed really inappropriate for me, and was aimed at younger people or those with more “classic” autism. Obviously your circumstances may be very different to mine, but that was my experience.

Many months later however I read things about social anxiety which also seemed to fit me and when I spoke to a GP just before lockdown, she agreed and gave me anti-anxiety meds which I think have helped. I’m not sure if I still think I have ASD.

My primary aged son is about to have his ADOS this week (2.5 yrs since referral) and due to corona it’s also online, despite us trying to avoid that as he’s not an “obvious” case either. I’m really hoping he gets a diagnosis, as I don’t want him to spend years wondering like I did. (And my daughter was referred earlier this year too!)

I hope you get the answers you need, but be prepared to go back to your GP or whoever if it’s a No and you still want to pursue what’s going on.

Have a socially-distanced, socially-anxious virtual handhold from me

@JessicaJoans thank you for sharing your story, I can only imagine what a knock back that must've been and it's what I am dreading as I also think the ADOS is inappropriate for adults, particularly women.

I used to work with a paediatrician who diagnosed autism in children which is how I came to be where I am today so I know a little bit about it.
Come back and let us know how your DS gets on? I'm keeping a close eye on both my sons and I have an inkling my eldest may be showing traits.......

Will do. I’ve had suspicions about him since he was a baby and more recently about his sister, although we were in less of a hurry to look into it with her as she doesn’t get into trouble at school like he does.

I’d read lots about the place that specialises in female presentation but couldn’t possibly afford to go private. SA really fitted for me too so maybe they were right (I guess they’re the experts after all ).

Good luck for Tuesday (YKWIM).

Thank you 😊

Had my assessment this morning. Was very strange. Mainly answering questions and I had to demonstrate brushing my teeth which was weird. No idea how I've done until later in the week. I keep going over it and thinking I probably came across quite normal which isn't really a good thing!

BTW I don't mean that to be offensive. Just realised how that sounded!! Sorry

Do autistic people brush their teeth differently to NT people?! I'll be paying attention to how I do it now

I had my assessment face to face 2 years ago and found module 4 really peculiar! Definitely developed for children rather than adults. I mask very well and was also worried they wouldn't see through it, but they did. I know how anxiety-filled this waiting bit is, you have my sympathy

I disagree that it's not good for adults; it is. And although it's not perfect for females, a good clinician should be able to work with it.

Teeth brushing looks at use of gesture, it's not to do with brushing teeth per se

Ooh @SuperEkstra can you elaborate on what that exercise is looking for? I'm intrigued! I asked if I had to use my hands to demonstrate and he said yes so I did. Felt a right idiot.

Thanks @MattBerrysHair they said they would phone me later in the week. I'm just trying not to build my hopes up. A diagnosis would be such a relief. I have no idea where I will turn to next if it turns out I'm not autistic. In fact I might seek a second opinion but trying not to get ahead of myself!!

Well, I'm not autistic. I'm shocked and just trying to process it all.

Omg, how frustrating. You know that it does not mean you're neuro typical?

I am surprised there haven't been any comments yet that you don't need a diagnosis, you're still you, but my life has changed dramatically since my ADHD diagnosis, although, tbh, I'm pretty sure now I'm ASD.

Not sure where you go from here, but just wanted to let you know I get it, and I'm so sorry.

Thank you @lborgia I'm just trying to think where I go from here. They are referring me for more psychotherapy so will see where that leads. I've just been in a cycle of different medication, CBT (3 times), psychotherapy, hypnotherapy etc etc for nearly 25 years and I just wish I knew why!

Is it possible to get a second opinion and have them explain exactly why they think you don't meet the criteria for a diagnosis? 12 years ago I was assessed by an NHS junior psychiatrist who had no specialist training in autism, let alone autism in women and girls. She said that because I made eye contact I couldn't be autistic. I was gutted as autism explained all struggles. It wasn't until 2014 that I has recovered enough from the upset and feeling stupid at being told I didn't have autism that I felt brave enough to get an assessment from someone who specialised in female presentation.

@Drogonssmile

Well, I'm not autistic. I'm shocked and just trying to process it all.

Would you see about a second opinion?

I'm certainly considering a second opinion, I'd have to go private and it'll cost a fortune so will have to wait a bit. @MattBerrysHair can I ask how you found someone specialising in females?I was told because I could communicate fine I wasn't autistic. They couldn't tell me why I'm so overwhelmed by everyday things or why I can't stand noise/textures or why I have difficulty recognising other people's moods/intentions from what they do or say....... overall they spoke to me for an hour and a half and it seems they only concentrated on my communication skills. The ones I've learnt from other people to fit in!!
There is so much more I could have told them.

I was assessed by two mental health practitioners. One who used to be a social worker and the other used to be an occupational therapist. I'm feeling more hard done by the more I consider it.

Ahhh, so sorry to hear that Drogonssmile . It’s a really weird feeling and it took me a good year to get past it I think.

Things that maybe helped were, as a pp said, just because it’s not “that”, doesn’t mean it’s not something (like I said for me the social anxiety thing seems to fit too, not the talking to a crowd thing - I’m a teacher with a drama degree - but understanding how/why people make friends, and reacting to change appropriately etc). If you find stuff hard, you find it hard and you can come to accept that’s part of you even without someone else recognising and labelling it.

There’s a place in London that I think specialises in female ASD but there’s no way I could afford that so I gave up. What did help was explaining to my closest friend that I’d been through that process and what I struggled with - they’re now able to tell me when I’m seeing things through my SA glasses, which has helped me not need to pretend so much in front of them.

Take a while to let it settle before you make any other decisions. It feels a bit like not getting a job you know you’d be perfect for in some ways. You’re still you. Have you checked out the Mumsnet board for adults with SEN (can’t remember the name atm)? There are lots of us in your situation.

I would request reassessment in 12months using DISCO not ADOS.... the DISCO assessment is more " female friendly" If you will, and uses a lot of background info.

I was concerned before my assessment because I think I mask brilliantly....however the assessor said whilst I probably mask brilliantly to NT people in passing, its fairly obvious if you know what you are looking for. Her report highlighted so many things I hadnt considered part of Autism before and was quite an interesting ( if difficult) read...mostly as I have 4 autistic children and thought I was fairly well versed