ASD assessment next week - what to expect?

[NeverMindTheBackProblems]

Two years+ on the waiting list and it's next week. I'm so anxious about it. I feel like I need to swot up on characteristics like for an exam. I have no one that knew me as a child so feel on the back foot already. DP is coming to support me and I'm worried that he will find out about what goes on in my head and not love me anymore. TBH I'm kind of thinking of cancelling it because I'm stressing so much. Can anyone tell me what to expect?

Bump...

Don't cancel. It's worth it in the end.

It is really hard as you have to drag up all your significant deficits . Expect to feel a bit shit afterwards for a good chunk of time.

Diagnosis is still worth it. Keep going.

Thank you @BlackeyedSusan I hadn't thought of that but yes that makes sense. I guess I'm worried too that they will say I'm not and where that will leave me. How long after the assessment did you get your diagnosis, if you don't mind me asking?

Every area is different. Mine was in the last appointment. Dd's was in her second of two appointments. (Child) Ds's we had to wait over Christmas (child)

I went out with a friend this evening and confided in her. She told me I'm not and not to be so silly. I feel like a fraud now. Does anyone else feel like this?

Schrödinger's autism.

Yes, it's normal. Don't worry about that. There have been other threads on here. Try looking through a few. Might help.

Your friend is not an autism diagnosis expert. Her opinion doesn't matter in the appointment.

Good luck!

She doesn't sound like much of a friend. This is something I discovered post diagnosis, none of my friends were actual friends. They were toxic people I knew. I dropped them eventually and my life has been made much better for that.

Don't try too hard on the lead up, the assessor will ask the leading questions - I wasted so much time writing notes and the majority were not needed at all.

Good luck - it's a tough time becsue you are taking through the things you find the hardest; a diagnosis can be life changing though

Thank you @fizzymizzy I don't really plan on telling anyone. But I have already ditched some friends who I realised were toxic and that I had to assert boundaries for the sake of my mental health. I used to be a complete push over tbh and always put others first to the detriment of myself. Glad to hear you didn't need your notes, I'm kicking myself for not taking a copy of my assessment notes.

OP if you are a mum / have a job / made it to adulthood okay(ish) many people will say it is absolutely impossible for you to be autistic, because sadly, autism is still stigmatised. The very severe side of autism is what most people have in their heads and anything aside from that 'cannot be autism'.

Please go to your assessment. It's worth it to know. Having a diagnosis can open up treatment doors. If you don't have autism, you should be able to get signposted to other support paths.

I'm autistic and the only person I've told is my husband and my (also autistic) best friend, because people just do not understand.

But my diagnosis helped me understand so much about my childhood/ current life and I am so much kinder to myself as a result of it.

How did it go?

Thanks for asking, and for your replies to my original post. It went well, I think. For someone that can barely say hello to my colleagues I talked non stop for both of the sessions. The first session was a bit weird, I guess it was to see how my imagination works and she gave me a kids picture book and asked me to tell the story which I really struggled with. Followed by lots of questions then there was a couple of decompression exercises (I saw it called that in her notes) which were to describe stuff, which again I struggled with. The afternoon was with my partner and lots of developmental stuff. I don't have anyone who knew me from childhood and obviously in my 50s don't remember a lot of it. My partner was great at giving examples of stuff that I wasn't necessarily aware of which I think helped. No hint of a diagnosis but she did ask me to fill out a form on ADHD, which she said she doesn't think I am/have but said there were indications. I have a meeting with them both on Thursday for the results. My mind's been spinning since of all the things I should have said, and I did get the chance to but decided not to as I figured they'd asked what they needed to. What's done is done. I will report back!

Well done. It's hard work.

Well, I had my meeting today to get the result and while I have many autistic traits I don't meet the threshold. They are now (surprisingly) looking at ADHD as some of my answers triggered that but without the H. I'm feeling a bit lost at the moment, I don't know where I go for here. I thought I would have the answers but they think it is connected to complexities in my life and upbringing eg disabled parent, moving home a lot and very low self-esteem.

Well done for persevering with the assessment.

It's really hard to not get a diagnosis if you personally felt you would. But it sounds like they are supporting you to the next steps and find the right help.
It's a difficult time but you will get there. The good news if it is AD(H)D there are some very effective meds for it.

I keep doing online ASD tests and they are consistently coming up with the same results. I'm reading ASD issues and they resonate with me. I totally take on board their feedback and I said to them that they are the experts and I respect their decision. They agreed that I have traits but I don't meet the threshold for a diagnosis. I don't know where that leaves me. AD(H)D doesn't feel right at all. I don't know where to go from here.

Hi OP, have you come across the idea of the broader autism phenotype? It can be used to describe those who don't meet the criteria for diagnosis but still have some significant traits. I'm pretty sure I fall into that category, and I find it pretty useful - it allows me to forgive myself for finding elements of life hard that others don't seem to, even if I don't think my traits are enough to warrant an actual diagnosis, if that makes sense.

I'm sorry you're finding it so tough. This 'inbetween' time is very difficult.

In the short term, I would say you are at a fork in the road and have two choices.

If you feel like their judgment was wrong and you do have autism, that's valid. You are well within your right to ask for a second opinion. Yes you'll have to wait a while, but psychiatrists are still people who have to use their own judgement with the assessment criteria and don't always get it right.

Alternatively, try and accept their decision and let them guide you to the next steps. Doing ASD assessments on repeat won't be helpful; they are just a guideline and are not a full psychiatry assessment. Many other conditions can cross over with signs of autism and they will have decided you don't meet the diagnostic criteria with good reason. And you're entitled to ask for the full reasons if you feel that might help.

This time is really difficult but you can decide which path to take and make it slightly easier for yourself. Most of all give yourself grace and be kind to yourself.

Thank you for your lovely comments @emiliaofnewmoon and @Jaggedbubble
I will have another appointment at some point soon to discuss the ADHD results. We didn't really get a chance to talk about the ASD results properly as they just launched into the ADHD questions. So I guess I can use that opportunity to have a further chat now I have reflected (and will think about how to use your comments too, thank you). The thing that I keep coming back to is that they said my interpersonal skills and facial expressions were really good and that's why they had decided I didn't meet the criteria. I'm really not like that usually, I'm actually pretty shut down but after 2+ years on the waiting list I was actually really hyped up to get my chance to speak if that makes sense, it was like I'd had too much sugar. I kept saying to them that I'm not usually like that. But that was what they saw and what I was assessed on.

That is SO difficult because they are getting a snapshot of your life is a small period. And that's why the assessment process isn't perfect.

I'm actually auDHD (autistic and ADHD, lucky me) but can present widely differently depending on the day/ my mood / the company I'm with etc. Sometimes one can mask the symptoms of the other. Sometimes symptoms of each actively fight against each other.

I'm saying this as if they are saying you've got autism traits and ADHD signs, it absolutely can be both. My psych told me one in 4 adhders are also autistic, however as recent as 2013 it was deemed impossible to have both. So there is a lot of incorrect information out there.

I hope you get some answers soon

Hello OP, your results are what I’m dreading, I’m scared crapless about an assessment, in case I don’t have ASD and then I’m like, well then wth is wrong with me then?! Like you, accounts of autism in women really resonate strongly with me, and I scored 33/50 on the AQ50 but I feel like I would bomb an assessment 😆 I have quite bad social anxiety and possible ADHD as well (2 siblings were diagnosed with ADHD and I share traits).

I don’t get this bit:

The thing that I keep coming back to is that they said my interpersonal skills and facial expressions were really good and that's why they had decided I didn't meet the criteria.

For me personally, I grew up masking to the 10000th degree due to my upbringing being very repressive and having to act a certain way. So I’m very good at faking being normal people, it’s my first nature to ‘get through’ social encounters. Well at least I think it’s normal, it may not be 😆 But wouldn’t this be true for a lot of autistic women who are ‘older’? A lifetime of masking?

Your experience has been interesting to read (I hope that doesn’t sound flippant), thank you for sharing.

For me personally, I grew up masking to the 10000th degree due to my upbringing being very repressive and having to act a certain way.

Are you me OP haha! Yes, totally, and I also had a very repressed upbringing - but this was used against me - they said my circumstances were probably what have caused my "issues" (for want of a better word). But yes, masking, I totally get what you are saying - how can we be this age and have not masked forever? For example I learnt how to act when I got a particular job - I copied how others acted and when I went to a new job I acted the same way and quickly got put in my place - so I learnt how to act there.

I was so sure that I would be diagnosed. And like I said I was like an overexcited puppy when I got my chance to speak - just like I am when I talk about my favourite band or hobby. But the rest of the time - I'm not like that.
At the beginning of the assessment they asked me how I would feel if I didn't get a diagnosis and I said that I would just have to accept that I am a weirdo. I'm finding it hard to come to terms with now tbh. But they did say that they would help me with strategies at our next meeting.

Your experience makes me wonder if women like us can up end up falling through the cracks, because of our upbringing, heavy masking, and as @Jaggedbubble pointed out, the added difficulty of a diagnosis if both ADHD and ASD traits are present, and those traits are fighting against each other or contradicting each other. Or makes it harder to come to terms with a non-diagnosis being made, because it’s only recently that they even recognised how autism presents in females vs males.

I was just reading this today:

https://www.autism.org.uk/advice-and-guidance/what-is-autism/autistic-women-and-girls

‘Although we now know much more about the experiences of autistic women and girls, society's understanding of autism has been limited by outdated stereotypes and incorrect assumptions. Although autism research and professional practice are slowly catching up to the realities of life for autistic women and girls, many barriers to diagnosis and support remain.’

‘Doctors and other healthcare professionals can lack knowledge about how autism may present differently in women and girls. This means women and girls may be misdiagnosed with mental health issues or their autistic traits may be missed amid the symptoms of co-occurring conditions. Some tools used to diagnose autism are designed to identify autistic characteristics that may be more common in autistic men and boys. This means the process may not be as sensitive to characteristics more commonly found in autistic women and girls.’

‘We don’t know exactly why more men and boys are diagnosed as autistic than women and girls. It is clear that many autistic women and girls are missed or misdiagnosed. It was previously thought that there were many more autistic men than women, but estimates of the ratio have gotten closer and closer over time.

Some of the theories are:

• a potential 'female autism phenotype' – in other words, autistic women and girls have characteristics that don’t fit with the traditional profile of autism
• autism assessments are less sensitive to autistic traits more commonly found in women and girls
• women and girls are more likely to ‘mask’ or camouflage their differences’

Hopefully this hasn’t been insensitive to post 🌸 Whatever the outcome going forward I wish all the best for you.

I'm sorry if it seems like I'm turning this into a blog but I had a meltdown today and I'm really fucking upset by it. I actually don't have them very often but I did today and I just feel worse now because NT people don't have meltdowns so if I'm not ASD then why the fuck did I have a meltdown? I haven't heard anything about the ADHD results so I'm going to contact them tomorrow and ask for a feedback meeting. I don't feel ok, I really need some support right now and some answers.

No need to apologise, it’s your thread, blog away! I’m really sorry you’re having such a hard time, it must be really frustrating and really confusing right now. I hope you can get some answers soon 🌸 I haven’t had the best experience with some doctors. For example, the first GP I saw to get my untreated Restless Legs Syndrome diagnosed was so patronising and minimising, he didn’t even understand what RLS is. He ended up prescribing me anti-depressants, the f’er! Those were so powerful they turned me into a zombie for the one and only day I tried them. The next GP I saw was visibly disgusted with that and gave me the correct medication. Then the next one who was reviewing my medication couldn’t even pronounce it and just giggled 😐

I know in women, ADHD is not as under-diagnosed as ASD, so you may still end up getting help and support in that area, even if the ASD is not recognised.

OP you can blog away, I'm glad you have this thread as an outlet!

I don't want to derail your thread to talk about myself, but I recognise so much of your journey. You are about where I was three years ago.

I was the child in counselling for anxiety and fear. No Neurodiversity ever mentioned.

I was the teenager in CAHMS for depression/ self harm / anxiety. No ND ever mentioned.

I was the women in my 20s who went through SIX different antidepressants, desperate for help, desperately suicidal yet happy with my life, but just couldn't make it work somehow. No ND ever mentioned.

I was the mum who was diagnosed and monitored for post natal depression/ anxiety. No ND ever mentioned.

I was the late 20s adult who walked into a GP and suggested I might have ADHD, (or ASD) and was laughed out the door and told 'no way'.

It is only by luck, the next time I saw a GP, I got the most understanding person who refused to not give up on me, and gave me the courage to pursue a potential ND path.

I'm now the woman in my 30s who is auDHD, medicated, doing so much better, understanding myself so much better (and therefore kinder to myself!!) and unapologetically being myself, after a lifetime of trying to become a circle when I was definitely a triangle all along.

There is a whole generation of ND women who are still lost, slowly getting pulled out of the water as medical knowledge catches up.

I know the saying 'keep fighting' is the last thing you want to hear when you are so exhausted, but if you feel, really really feel this is the right diagnosis, then you need to keep pushing, because hopefully you'll push towards the right person who can actually get you where you need to be.