Chapter 9 Autism ADOS 2 assessment
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- เผยแพร่เมื่อ 3 ต.ค. 2024
- Chapter 9 recapping my unexpected Autism and ADHD year: this week I focus on the formal ADOS-2 autism assessment - how to prepare for it, what to expect, and the rollercoaster of emotions you can expect before, during and after it.
Uncertainty and unpredictability often really stresses us when we’re on the spectrum and I couldn’t find an awful lot about the process of the ADOS-2 assessment prior to my own, so I hope this video helps plug that gap a little bit and de-mystifies what to expect, making the process of a formal assessment feel a bit less intimidating and a bit more surmountable.
Please do like and share this video and subscribe to my channel if these videos are helpful.
I'm going to keep posting the link to the AQ Self Test for autism every Sunday in case this is the first video in the series people come across: psychology-too...
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Thank you for this. I had my ados 2 appointment yesterday in Glasgow, hence why I’m now on TH-cam watching videos about the ados. All of what you said completely rings true for me. I now have my 2 week wait, my mind sways between “I’m definitely on the spectrum” to “omg I’m so stupid of course I’m not” or “I messed up my assessment because I didn’t do/say this thing”. I’m so happy for you that you got the result you were hoping for. Ps, my son is called Struan, it’s a great name 😉
Amazing! Good luck to you and hope you get some of the clarity you're looking for. Hope the wait's not too rough (it will be, but..). High five to wee Struan too!
I'm on the Glasgow Adult Assessment waiting list, boy is it depressing looking at six months just to donthe questionairs but then another tewo years sigh!
@@caledoniansmurf3691 It is indeed depressing - the excruciating timings of doing all of this through the NHS are what led me to attack my savings and go private with it. I don't regret it but it shouldn't have to be like this.
@@amineurodivergent We did consider raiding the piggy bank and going private, as I had a private psychiatric report done for DWP, but our GP said sadly it isn't accepteby all dept's or services, sigh! He was happy to forward the Private report and it has helped me skip a step (it was an NHS Dr that did the report in a private capacity). Thanks for your videos they are such a blessing. Best wishes for the silly season 🎄🧑🎄
@@caledoniansmurf3691 you too
Thank you. I'm 72 and only relatively recently have found ASD and ADHD to fit me but going through the diagnostic process is a healing pleasure I'm not likely to pursue as it is not covered by my medical insurance provider for folks my age. Trivel-dee-dee. Listening to your video and composing this comment is just the right activity after more "on demand" community interaction and task performance than I've been able to process quickly. Learning to recognize the fire of burn-out for what it is helps enormously. Again, thank you for your presentation. Not too spicy. Not too bland. Relatable and informative.
Thank you too - nice to hear from you and I'm sorry to hear about the medical insurance provision. To me, diagnostic processes should be accessible at ANY age. So much needs to (and will) change going forward. In the meantime, take care and welcome!
@@amineurodivergentapprox how much did a private assessment cost?
@@joe-mama6451 Yeah ... not a happy amount. Roughly £1k. I don't regret it, because I couldn't have waited in uncertainty for 2 years, but yeah, I still feel a little nauseous thinking about it.
@@amineurodivergent thanks. The place I’m looking at is in Canada (I’m in America) and they want 2200CAD ~1600 USD for the gamut and it’s all done remotely. So I think you got a bargain lol.
Thank you so much for your honesty and openness. I’m waiting for an ASC (definitely not D) assessment, which is probably many months away. I have an ADHD diagnosis. I feel very anxious about the process and your video has helped. I usually research the living daylights out of everything I do…..which probably fits the profile. It’s been really useful to have such an excellent description of what I might expect. I’m 62 and have been masking all my life and worry that I might be too good at it by now. I hope the assessors can see past the mask to the very troubled person underneath.
Have a look at this link if you're in full research mode if you've not come across it, it's a guide for assessors: I hadn't seen this when I either had my ADOS or recorded this video, but I would have found it really useful to see: www.rcpsych.ac.uk/docs/default-source/members/sigs/neurodevelopmental-psychiatry-special-interest-group-ndpsig/ndpsig-autism-diagnostic-interview-guide-2.pdf
Thanks for taking the time to reply. This was really helpful.
"Either the rest of your life and the way you think about yourself is about to change forever or you're about to feel like biggest effin idiot in the world that just wasted a lot of money and or time and is about to be told to go away and get a grip of yourself" - that perfectly described my experience of my ADHD diagnosis (I'm still awaiting the result so the jury is still out whether or not I'm an idiot and things are about to change) - nicely put!
You're not an idiot either way! This was just the way my low self-esteem brain was pinging at the time. But I send you strength for the wait, it's a horrible time when you're in that 'nothing zone' just waiting. There's a funny phrase about autism diagnoses I like, that: "only an autistic person would actively seek out an autism diagnosis" - I don't know how transferrable that is to ADHD but given we're all in the same wheelhouse, don't let the lack of a formal diagnosis let you stop mining the neurodivergent community for tips and hints if you feel like you have at least a foot in the camp. Good luck with the wait!
@@amineurodivergent Thank you for your kind words. I was actually looking towards an autism diagnosis but it seems to be incredibly hard to get it done due to insane waiting lists of 2+ years, if they're even open at all. Personally I believe I have both and you're spot on - I'm definitely seeking a diagnosis. I think you also mentioned it in one of your videos that it's simply a matter of understanding oneself and having it official.
It's all about the confirmation that you're not crazy and that there is an explanation to the weirdness you've experienced your whole life.
Only 3 hours left at this point, time is definitely slowing down :D Cheers!
@@Chrotesque Good luck!!!
@@amineurodivergent Apparently no ADHD in my case. The feeling of being the biggest effin idiot applies right about now :D
@@Chrotesque Nope, no way are you the biggest effin idiot (I shouldn't have put what was going through my head in the vid!). Diagnostic criteria are applied very inconsistently. This does not mean you don't have ADHD, it just means you weren't formally diagnosed at this time. There's also so much overlap between ADHD, Autism, Dyslexia, etc. Don't let them drop you now that you're in the system either, keep at it until you get to what's going on under the bonnet. This isn't the end of your discovery journey, just a bump.
I like long videos and didn't think this was long.
I'm taking the assessment tomorrow and I'm TERRIFIED. Thank you for your video, it reassures me a bit
Thank you so much for this video - very timeous for me as I received my assessment appointment today, which was unexpected as it was only 17 days ago they sent the letter telling me I’d passed the pre-screening and was now on a lengthy NHS waiting list.
Already onboard the emotional rollercoaster you mention, but after 54 years I hope the process finally allows me to come to some sort of understanding of myself.
Keep up the good work as information from a male perspective has (for me at least) been very difficult to find.
Good luck and glad this was helpful - that's a very quick turnaround, whichever area you're in is obviously in pretty good shape in terms of waiting lists. My pre-screening happened very quickly, but I was told the wait for the actual assessment would be around 9 months. I was aghast at that, but was told 9 months is pretty good - in some local authority areas it's a 2-3 YEAR wait, which is insane. So you've been fortunate with the turnaround time, but the emotional rollercoaster is the same and it's exhausting. Good luck at the assessment!
How did it go?
Oh my goodness 😂 I laughed a knowing laugh when you described the back and forth thoughts post assessment as I recognised myself in what you said. I was dreadful the first couple of days after and realised I'd not given the best answers. My mind went blank a few times during my assessment and I felt so observed that I felt under pressure to find an answer or example for them. Then the following days I would think of more suitable responses. My first assessment was over zoom and a really uncomfortable experience for me. I didn't get a diagnosis that time. They'd clearly been looking for young male stereotypical behaviours and not the subtle nuances presenting in an adult female. I wasn't offered a second opinion at first, but after trying to seek one, my GP contacted the NHS commissioner and they got the assessment centre to reassess me. This was over a year later, and in that time my burnout had gotten worse and I was lost. I'd told the first assessors that I felt I must be autistic and that if it's not that then what is it? I'd felt like a faulty human my whole life. Like an alien not of this planet. That it had been a lifetime of failing at being accepted and understood and that the burnouts over the years had been thought to be an anxiety related condition and I'd felt like a perpetual client from these times of overwhelm and burn out. I knew that autism was a better descriptor for all I'd experienced yet I didn't get a diagnosis and was stuck wondering how to get to the bottom of what was 'wrong' with me. Fast forward to the second assessment and I was met with an apology for my first assessment and that those assessor's no longer work for the centre. They told me that they thought their decision was because they were inexperienced, whereas this psychologist had 25 years experience of assessing women. When they contacted me a week later giving me my diagnosis and they apologised again for the initial error.
I'm so glad you got yours first time as going off what you said in the video you were where I was at. This need for this validation as the alternative was being left feeling misunderstood all over again and still not having that validation that you're not a faulty human you're just a different one.
That's a horrible experience, I'm so sorry you had to go through all that. I'm glad they got it right the second time. I've heard a lot of women talking about the differences and more subtle presentations, I'm really keen to find out and understand it more. It's such a rich and varied way these things present in us all. My first therapist said I had 'masked more like a girl' growing up, which my wife thought was hilarious, but I'm really conscious in doing these videos that I don't help contribute to just 'one way autism looks like', as there are so many different presentations. Thanks for sharing the above, that's such a frustrating traumatic experience to put you through.
9:15 "... autistic inertia ..."
Well holy shit, this was an eye opener, i've been on a rabbit hole for months looking into what i've suspected all my 48 year life, and as much as i've had eye openers already with revelations of "oh so THAT'S why i do/did that !".
THIS one blew me away once i paused the video and looked it up, and learned, that it describes EXACTLY how it feels for me to switch gears, and how it relates to procrastination, and motivation, etc o.O
Thank you !!!
Yeah, same - didn't know what was going on with me for years, and this was yet another aspect of: not lots of things going on with me, just different ASPECTS of ONE thing. It feels really nice to finally, sort of, understand why the switching gears thing can feel so hard for me when it doesn't seem to for others. I did more on autistic inertia in my Chapter 28 video on Procrastination. Thanks for watching and good luck on your journey!
@@amineurodivergent as a former Brit who moved to Oz, i appreciate the people like you who are chronicling their exploration, to the great benefit of others.
cheers mate 👍
You have articulated this excellently, so honest and raw! Thank you for sharing
Thank you for sharing. I have difficulty answering the questions about what makes me happy and sad too. I went for a formal diagnosis in January and it was exhausting process.
I'm going through your playlist and it's reassuring to relate to someone else's experiences.
Thank you for your video. I'm currently in the process and will have my ADOS assessment shortly. I have done the oral evaluation today and felt very anxious about how "strict" it was. It made me feel seen to see someone else doubting with their imposter syndrome and fear of not being seen and being seen as faking and being desperate for a diagnosis. That's really how the first assessment made me feel. I'm having even more doubts because my special interests concerns social, behavioral and psychological rules or patterns and really haven't had the space in my childhood to not mask, so I fear being undetected because I don't have typical autistic traits. Anyway, oversharing, but all of this to say I appreciate your input on your experience. ❤
Not oversharing at all - thanks for putting your experience out there, I think all of us feel a bit more seen hearing about experiences that track closely to our own. If enough of us start putting those experiences, that discomfort, that imposter syndrome, out there, I genuinely hope the diagnostic/ recognition process going forward can become far less stressful and far more empowering for everyone. Good luck!
Thank you so much for sharing. I’m on a similar path but only at the beginning of this process. 🇨🇦🍻
Good luck - it's a bit of a bumpy road but you'll at least know what vehicle you're travelling in!
hey again, another amazing well thought out topic. I am happy you covered this not many people with autism i follow discuss about the assessment or after , which i find a shame, because it would be good to know more about what to go through and what to expect.
Exactly - important to demystify stuff like this. I think a lot of people who wonder or suspect they may be autistic think an assessment is something like Eleven from Stranger Things, hooked up to monitors and brain scans. I certainly thought it was going to be something like that when I first started thinking about what it might be like. It's absolutely nothing like that.
I started crying in the beginning of my assessment, out of nowhere. I wasn't expecting that. I cried a lot actually. Found out at 49.
I'm feeling really panicked. I am currently going through assessment, after nearly 7 years on the NHS wait list, but I'm not having just one appointment.
I had a zoom appointment with a clinical psychologist and OT last week, I'm having a face to face interview tomorrow, then I will apparently have two more remote interviews, and my husband will be having a 2 hour phone interview next week to discuss me.
It's so bloody stressful. I have emailed them over a hundred pages of diagnostic tests I've completed and additional information. I'm finishing my additional information for tomorrow. It's just so much 😢
I'm sorry to hear it's so much, this is way more than I had, it all seems so arbitrary. This may be too late, but this link is an interview guide for assessors and I REALLY wish I'd seen this prior to mine to help with the predictability anxiety. Good luck! www.rcpsych.ac.uk/docs/default-source/members/sigs/neurodevelopmental-psychiatry-special-interest-group-ndpsig/ndpsig-autism-diagnostic-interview-guide-2.pdf
Thank you so much for this. I'm currently self-diagnosed and it helps a lot to understand how the assessment works.
I did chuckle about your home alone behaviour! I do something similar but cos I is female I run around in the last hour tidying up and getting dressed. I'm going to look up that about inertia. I agree about the unmasking. If I were to unmask now at this stage there isn't going to be anything left of me.
Btw Trying to Unmask is a good channel.
What a great channel - thanks so much for the link, I've subscribed and making my way through the vids now! The more of us that can put our voices out there the better, there needs to be such a paradigm shift in the way we live and fulfil our potential.
@@amineurodivergent I meant to say thanks for going over your assessment experience. It is helpful. Kate on that channel is funny when she said she wished she had the genius kind of autism! I do too. I do believe there are talents/gifts in us that just need some nurturing, some tlc.
@@denisescally7090 100% and I truly believe mostly our talents/gifts are just the way we see the world and normalising that.
I really really appreciate this! I have an intake appointment next week for a clinic that uses the ADOS-2 so I'll be going through this sooner or later. I've found very little other information online describing what that process is like so I'm really grateful for how straight-forward and open you were here :) wish me luck passing my test lol
Good luck, hope it's not too stressful an experience!
I self diagnosed and took as many of the available online tests that I could find twice, and a third during my assessment (masking, AQ, RAADS R) and scored clinically significant on all of them. My assessor was not the person I was told I was going to see which really threw me off, and then, before we even started testing, this lady says to me 'based on what I see you're not going to pass the ADOS and you said you can make eye contact (when I clearly explained I can only when the other person is talking), although based on what we talked about you checked all the boxed for the DSM'... this also threw me off. I felt invalidated and suddenly very embarrassed. My life up to assessment is very similar to what is discussed in this video. My assessment experience overall was pretty much the same also. I also wrote up many pages plus a follow up email detailing out much of what I could. I wrote that remembering childhood was hard but was able to share that I had and still do have unconventional repetitive behaviors - I don't rock or spin, I bit things, stole a lot as a child, and now I scratch . I added that I was memorizing stories at three and was reading before kindergarten. That wasn't even noted as being important during the initial chat. She was like 'without childhood experiences this will be hard'... I'm upset that this experience felt so invalidating and that I was made to feel dismissed which likely skewed my responses to things like the tooth brushing test. I started talking and then caught a glimpse of her face and clammed up instantly. Like the speaker said, the two week wait is going to be difficult. Thanks for making this video.
Thanks so much for sharing your experiences, that sounds like a really stressful experience, and I very much relate to second guessing and over analysing everything the assessor said. Wishing you lots of strength during the wait and I hope you get the answers you're looking for. Scratching is interesting - it's a body focused repetitive behaviour (BFRB), very common amongst neurodivergent folk. I'm a scratcher, and a hair picker. Satisfying at the time, frustrating afterwards. Cycle through the shame and guilt. I hope you're doing ok and good luck when your report comes through.
Did you get diagnosed?
@@kie7124 Lmao!! Another non-responder!!
Thank you for sharing this. I am due to have my ADOS 2 later this month and am feeling pretty anxious about what to expect.
I just did the ADOS and tbh I was just confused the entire time and they had to modify certain parts of the assessment because I couldn’t do them and I get my results in a month which sucks and I feel a bit shit. Idk. I’ll see what happens
You explained that beautifully. Thank you.
On getting a formal assessment, what if you don't remember much of your childhood and have no contact with with the few living relatives you have left?
I think they will work with you and accommodate different circumstances. If you're not in touch with family, you're not in touch with family. I would say: get in touch with the provider/assessor you're thinking of using and tell them your situation and I think they'll work with you around the information you have available. The bulk of assessment (in my experience) is around your current lived experience and the motivation of why you're looking for a diagnosis.
I was diagnosed at 58 and I told my family except for the ones not in my life at that time .
My sister I didn’t tell but a year later she told me she thinks I’m not autistic , first I was shocked ,someone had told her and then I had to deal with her doubt , she said she works with autistic kids and has for 15 years and that I was not autistic also that she knows me and shared a room with me as a kid etc
My response was good , I said that I expected this response from her and that I was not going to try and convince her.
But it really bothered me , she is my older sister I would like support and acceptance but that won’t happen.
I then spiralled in to dis regulation and then impostor syndrome for three weeks so far.
She also said what do they know putting down the dr as having just a piece of paper.
I was given a short list from autistics themselves ,from the community , a short list of experienced clinical psychologists to diagnose me and had to wait 6 months (not as long as some , I know) and go through the process.
it just sux.
hopefully I come out of this soon and embrace knowing I am autistic and now my life makes sense again.
Thank you for sharing Kerilyn. It's particularly disappointing to hear that someone who works with autistic kids has so little understanding of autism and has this level of ignorance about its different presentations. There is a very good free online course on autism, you could perhaps share the link with your sister to a) help with her own continuous professional development and b) be more curious and kind and learn not to minimise her own (diagnosed!) family member's experience with the condition. www.futurelearn.com/courses/autism - I wish you all the best, it's sad and frustrating when our family members let us down.
Family are the last people I would tell.
Thank you.
Thank you so much for sharing your experience. My assessment is tomorrow and this is exactly what I needed to hear.
Good luck with it - all the best! Relax, don't mask, and don't be embarrassed to describe your struggles on your worst days.
@amineurodivergent I got your message just as I was sat waiting to go in, and it helped, so thank you for that. The assessment was OK, I think, but now I'm panicking a bit about all the things I didn't say. Anyway, I'm sure I'll know either way soon enough. Great channel, keep it up!
How did it go?
@kie7124 I was diagnosed. The assessment took about 2 hours, and then a week later, the assessor called with the news and we spoke for about an hour, and then a week after that, I received the official written report. The assessor said that the team were all in complete agreement that I met the criteria, and went on to explain in detail how they reached their conclusion. My head was spinning by the end of the phonecall because there was so much information to take in, so I would definitely recommend having someone sit with you to listen in if you have similar difficulties with processing verbal information. From start to finish, the whole process took a little over two and a half years here in the UK, but I have to say that, despite the wait, my case was handled very well, and the report was forensic in its detail.
very helpful, thank you supper appreciate it!
Rewatched this today after having had my 1st assessment and youve summed it up. Felt like i had to water down my answers to avoid coming across as someone cheating with all the perfect examples and answers. Over 50 years of suffering is impossible to relay examples in 60 mins
It really is way, way too short for assessors to get a sense of a person. Hopefully these processes get better in time but in the meantime I hope you get the answers you're looking for, and that the wait for them's not too hard.
Thank you! I agree. ❤
I had an autism assessment in 2015 without doing any research and was told that I was 'too empathetic' to be autistic, and that I just had anxiety. Now looking into a private diagnosis because I know deep down that I'm autistic. Everyone who knows me agrees that I'm autistic.
The empathy thing is such an old-fashioned view of autism, particularly when co-occurring conditions such as ADHD or Dyslexia as also in the mix with it. How do you score in self tests like the AQ or CAT-Q tests?
i was assessed and the lady lied about some things. i think she didn't like my big pentagram i wore. she said she saw some autism in me based on my monotone voice and not using gestures. but she said i don't have it cause i made good eye contact(i don't, i make little contact), and i spoke in a sequeintal manner.( um, i wrote down 10 pages and worked on it for months so i remembered everything by the time for my assessment.) but i was too nervous to even take out my notes and everything. she said i denied having repetitive behaviors, another lie, i wrote that down on my application. i am tramutized for another evulation, ugh!!!
Sorry to hear, that's very disheartening. Sustained eye contact can be hard for some - but not all - autistic people; her claiming you have typical eye contact when you DO find it difficult is bizarre. Also, speaking in a sequential manner? Since when is that a trait of being NOT autistic? I am starting to think there needs to be an absolute revolution in the way autism is assessed in adults, we're being led and let down by donkeys here. I'm so sorry to hear you went through this experience.
I really appreciate this video. I'm waiting to meet for my assessment, and I'm 41. It's already nerve-wracking. I keep wanting to type out a list of everything I've struggled with, like you did, but I know I'm going to be a wreck doing even that. I have a feeling I'm going to cry during my actual assessment. I friggin cried over the phone when I left a message asking for an assessment. I think if I had known when I was much younger, it wouldn't be so rough to deal with the diagnosis. But getting a diagnosis after I've lived 41 years just feels like I've been cheated. I can only think about the help I could have gotten that could have made it easier for me to get through school and to keep a job longer than four months. I've been told I shouldn't blame my mom, whom I'm living with now because I cannot keep a job to live on my own. But it's very hard NOT to blame my mom when she put so much emphasis on my youngest brother getting help with his ADHD and ignoring every time I had to drop out of school (in 2nd grade, 10th grade, and only four months of community college) and struggling so hard to make friends and to even get meager passing grades in school. My mom just (and still) wanted me to be the "problem child" so she had someone to play the victim with all the time. She still yells at me for "yelling" when I can't hear it myself. My own daughter is autistic (and lives with us) and there almost no difference between her and I. Yet my mom still acts like I'm just a lazy good-for-nothing and trying to make her life hard. It's so hard to NOT blame my mom when she's purposely denied me the chance to get the help I've clearly needed my whole life. I just hope I can get through my assessment without crying the whole time so I can get the diagnosis and get some freakin help with life.
I'm sorry, it sounds like you've really been through it. Good luck with your assessment, and I really hope you can get thing pointing in a good direction for yourself again!
Thank you, have my assessment in 11 days (and counting) for both Autism and ADHD (pretty sure I have both). This explained a good amount and reassured me also in some aspects. Would like to know more about the assessment if I could but can't find much anywhere- which is making me anxious for it even more.
Check out this link, it's a guide for assessors. If I can finally clear some disk space on my laptop to record more videos, I want to do a follow up video with some of this stuff, but hopefully this link might be of some use with the predictability anxiety in the meantime. Good luck!
www.rcpsych.ac.uk/docs/default-source/members/sigs/neurodevelopmental-psychiatry-special-interest-group-ndpsig/ndpsig-autism-diagnostic-interview-guide-2.pdf
This video series you've made is wonderful. Thank you so much for sharing your thoughts, I find it comforting to see this from another AuDHDr's prospective right now since I am awaiting my official assessment results on 8/23/24 (next Friday). Im fully expecting the results to confirm my self-diagnosis, and while I'm trying not to worry about it too much, it has been hard to know that they might tell me otherwise and I will be back to square one. Your words in this video have diminished that anxiety and worry.
I literally transcribed every sentence of this it has been so helpful. You speak very well too!
Thank you - wishing you the best as you undertake your own journey!
Thank you so much!
Thats interesting about when you were living on your own. The polar opposite of me, like during covid i had all this PTO and she works in a hospital so she couldn't take time off.
I refined a system i used now with a whole kanban board and i set up all the tasks i want to do throughout the week. When she was in grad school i was the most regulated ive been in my life because i essentially lived on my own and had this very regular schedule i stayed to. Brains are cool.
Brains are indeed cool! I've also taken this super-efficient approach too when I've lived on my own for longer periods. For me, I think living with someone and compromising into systems that aren't QUITE 100% my own and perfect for ME, whenever I get a respite I just go full-on NO SYSTEM. Part of that flip-flopping - I think - is the autism vs. ADHD and whichever is in ascendency at that time. Brains.
I've already booked an assessment in around 35 days now and I'm literally trying so hard not to study for it 😭 unpredictability is so hard on me, but I think if I do "study" for it too much (I practice speech from time to time, but I really can't stop myself), I wouldn't be able to give a sincere impression.
There's something I'm wondering though, my mom isn't really onboard with my autism DX and I'm suspecting she's on the spectrum somehow? I got my speech delay from her as a child that was originally why I thought speech delay is normal as a kid 😔 so would this be an issue if I couldn't convince my mom to take part in the assessment?
The need to study and the hatred of unpredictability is real. As a middle ground, I might suggest preparing a little half page written 'intro' speech to take in with you about why you want the assessment and what you're hoping to get out of knowing, that you can ask to maybe read out to the assessors at the start. It will calm your nerves, it will help you set the tone, it will also help the assessors understand where you're coming from and having read that out, you can then maybe relax a little into the experience and just try to answer the questions and prompts as they come. The assessors will know and allow for extra processing time, it's not like a job interview where long pauses before answering are seen as negatives. It's expected and allowed for here. On the issue about involving your parents, I was in a similar situation. I didn't want to tell my parents I was going through the assessment in case it turned out NOT to be autism and I'd just caused a whole lot of unnecessary worry for no reason, so when I did my pre-screening and developmental form, I told the assessors that and they agreed I could use the developmental form myself in a private conversation as a prompt to ask my parents (or someone else who knew you when you were younger) about my behaviours as a child. It's not ESSENTIAL info (some will no longer be in contact, for example) and I found the assessors to be quite understanding of the situation and make allowances, I think if you're honest and tell them you want to minimise stress AND you have a decent suggested workaround, they'll work WITH the client to try to make the different aspects of the assessment work for all parties. Just talk to them and tell them your concerns and see where you can get to, together. Neurodivergence tends to run in families and t's a big problem with child assessments that the parent often doesn't see anything 'odd' about a child's behaviour, because they're neurodivergent themselves and would probably act in a similar way to the child. That blocker obviously can continue into adult diagnoses too, when parents don't 'get it', don't see anything unusual, and/or are resistant (sometimes even hostile) to the process of their child getting an adult dx. Assessors will be familiar with a lot of these issues - just talk to them/ email them and see what kind of solution to your worry you can get to, it won't be the first time they'll be hearing of stuff like this. Good luck!
@@amineurodivergent
I have no idea why I didn't attach more details to my emails to them before lol, ty for the push! I have just sent them the longest email I have ever written in my life lol 😭 probably going to be their most annoying client as well. Thank you again for your amazing videos and replies!! You have no idea how helpful your chapters are for me tbh!
@@justno8331 Really pleased to hear that! That's my motivation for doing these - I found this terrain really difficult and unclear to navigate when I went through it so hoping these rambles help pave the way a bit for people navigating similar boggy terrain that I did. And don't worry about annoying them with detail - it's what we do! 🤟
I practised many times before my first appointment a month ago, and OMG, i was so anxious and unsafe in the waiting room. I entered, and i started crying i felt terrible and unsafe. The appointment was about 15 minutes i think i told her all my life in about 5, and i felt so awkward. In about 3 weeks, I have my second apportionment for testing and will bring the questionnaires with me. I am already thinking about how i will show up this time and feeling like i may not be autistic/ADHD. Maybe it is all in my head. Then for moments, I feel fear about being diagnosed or not diagnosed. At the moment, all feels shaky and confusing ;(
Thanks for sharing that, I completely recognise what you're saying. I don't know if it might help, but another video I recorded on my channel on Autistic Imposter Syndrome covers some of this - you're NOT alone in the way that you're feeling turned inside out by all this. Thinking of you.
Thank you for your insight....I am looking to request for an assessment...
Thank you and all the best on your journey!
Very similar experience for me. I got my diagnosis last week. Also the emotions before, during and after. Oh by Jove, the imposter syndrome!!! I did start my search for a specialist with a dangerous idiot psychiatrist who told me after about 2 minutes that I had a severe depression. I took me an hour to get that down to a mild depression (!) and get the name of a psychologist colleague of his who could do the testing. Like you said, trust your self diagnosis and also, you have the right to walk away and eventually to file a complaint. I think I will. 50 years ago, this guy would have put me away and on heavy meds... Quite terrifying encounter
Ugh. that sounds very unpleasant. I'm so glad you got your diagnosis eventually though - congratulations, but it doesn't sound like a fun journey getting there. I'm glad you made it though.
Hi all I'm 56 going through the process in a foreign country and language and alone awaiting results already been told they don't think I am, though I know I am, stressed out, in meltdown, but doing my best to keep on keeping on... Good on you for sharing your experiences...
@@maddywilcox9012 Sorry to hear you're going through this frustrating wait period and receiving mixed messages. Good luck, I hope you get the validation you're looking for.
"Going feral" --- Ohhhh yes. Me too.
Thanks for sharing. Sounded like someone paraphrasing my exact experience.
Going to come back to this in a week. Am in the process and just filled in the forms while they decide if I can go on the wait list. That weird feeling of the go referred me, yet got sent th next level of forms, but sure triggered a ton of emotions. As you say so much matches, been invalidated for so long, I needed someone else to see this. I have one person who totally sees this in me and they r nd too. I'm now burnt out n needing dark room silence and a lot of sleep to regroup. A Purrble is helping me regulate. Will watch when I'm less triggered head space as it will really help to get an idea what to expect.
Good luck, it's a really stressful time. Sending you all the best.
Im terrified I messed up BAD. I don’t like surprises, I don’t like not knowing what’s going to happen. There was no way on this godforsaken planet that I wasn’t going to look up the entire ADOS -2 test before being given it. So of course I looked it up. And I’m a smart woman, so I realized this test was never really gonna work on me. I would know immediately what they’d be looking for. It feels like such a crappy test. And I feel like I messed up my chances of ever truly knowing. I’m thinking maybe if I get a different assessment with a different test? I still don’t have the results from mine but I know I already screwed this one up. I don’t think I can trust whatever result it gives me. Not unless it is honestly very justified when the report is given. I just don’t know how nobody ever thinks about this small little detail??? What autistic person likes doing things without knowing what’s going to happen first???!!! Like. No. There was never a single chance I wasn’t gonna look that test up. God. I feel so stupid. But like they should’ve thought about that?!!?!
I appreciate you sharing. I have self diagnosed and am considering a full on diagnosis because I need to know why I feel like I’m struggling so much- it seems as though it’s all gotten more intense noises, lights, people. Your description of your own story is so relatable and just in taking all of the assessments line and realizing there is an explanation for all of my “quirkiness” felt so relieving.
Lack of resources anywhere near me for adults means I'm not likely to get a formal diagnosis any time soon. And there's the strong independent streak I have, which is telling me I don't really need that sort of outside validation (laughing at myself here). But listening to the process you went through with it does help me understand my own life better. So once again, thank you. Lynn from Vermont, USA
I'm increasingly realising formal assessment/ diagnosis is not the be all and end all. Self-acceptance and understanding are far more important than any kind of medical validation. In retrospect, putting such high stock on getting a diagnosis was a bit of an irrelevance/ distraction for me, almost, I think.
You could always go to an APTC member training clinic. Just by you mentioning Vermont, I found this one: "Vermont Psychological Services (VPS) is a non-profit outpatient mental health clinic and training facility for the University of Vermont clinical psychology doctoral program."
Unfortunately, there is no mention on pricing, but many of these offer greatly reduced fees.
My girls are both going for their ADOS assessment this Sunday and at the moment I a hedging on being a self diagnosed adult after my daughters get their results abd my son has been seen also for ADHD assessment I am looking to go for a assessment as well. Thank you for your insight into the ADOS assessment it's been really worrying me because it's only a few days away for my girls and after us spending 2 years reading, self evaluating ourselves and each other too we are all suffering the imposter syndrome and what if we are just crazy instead thing.
Good luck - I really hope you have a good assessor who can see past any masking to the underlying challenges beyond, someone who asks the right questions and listens!
First of all thank you for this informative video.
But dear goodness, how I can relate to all of this!
I've had my first assessment session just over a week ago and it's been quite hell-ish.. Imposter syndrome had me going before but now it's really flaring up. The first session was basicly a 2hr interview, but I feel it was waaay too short to be able to tell everything and so it indeed feels like I've forgotten a whole bunch of things. I gave the assessor a sheet on which I've written a whole lot of traits which clearly indicate I'm autistic, but even then I feel like it's not enough, even though I just KNOW I'm autistic.
I'm going to be so happy when the whole assessment is going to be over.
That all sounds very relatable and familiar - good luck, best wishes, and I hope they don't keep you waiting too long...
thank u so much, I'm getting the ADOS tomorrow and I'm so stressed
Hope it went ok and that the wait over the next couple of weeks isn't too horrendous for you. Good luck!
How did it go?
@@kie7124 Ugh!! Right?? How rude of them to not respond!! :(
8:20
10:40
11:35
13:00 yeah that part sucks
14:30 i wish someone had told me
I love how you propose calling it Autism Spectrum Condition! We all have different conditions of our existence. Living with a different condition doesn’t mean you are in a state of mental disorder. I love this distinction. Mind you, I have autism, and have been diagnosed with two mental disorders stop. Autism simply isn’t one of them.
i got diagnosed with ASD 1 and it definitely is a disorder to me. i can't hold down jobs, i became an alcoholic at 16 and at 30 this year i just began recovery due to the exhaustion of socializing, and i struggled in school with non-concrete subjects like physics and english writing. it has to be a disorder imo to be debilitating and it definitely is - at least in the society that set "normal" standards. i feel like im perfectly fine the way i am i have no qualms, but when having to move through a "neurotypical" society, it definitely is disordered and debilitating 😥
I have my assessment on weds and I’m so scared because I just don’t know how to unmask and I get emotional when asked about my struggles
Write it all down would be my honest advice, print it out, have a script with you, tell them what you said above, and give them your notes at the end of the session. Unmasking is, at heart, just NOT trying to deny yourself and not trying to live neurotypically anymore and not pretend everything's fine. By having an assessment and being self aware enough to say you're scared and that you get emotional talking about your struggles, you're already unmasking more than a lot of us. You can do it - Wednesday will be painful and raw but you can do it.
This really helped I'm just going through the process after debating for months, had the developmental history done and waiting to see if I will be put through the ados 2 assessment
Thank you! i only can say this.... Thx 🙏
I love that you suggested calling it Autism Spectrum Condition. We all have different conditions of our existence. It doesn’t not connote a state of mental disorder I love it! I’m autistic and have two diagnosed mental disorders. Autism simply isn’t one of them, in my opinion. It’s debatable whether many states are just conditions of the brain, or true disorders. It’s also debatable that it’s beneficial to label people as, disordered. When I was talking unhelpful risks with my life, I felt like I had a bipolar disorder, but now that I just have to order my life in a certain way and do certain things, I can usually avoid what I see as a true state of mental disorder. With the right diagnosis, information, resources, and chemical balance, I feel more like I am living with a bipolar condition. How can anyone tell another person if they have a disorder, or a condition? If you are very involved in their lives and care, you might have that insight, but does a random service provider, or landlord where a person is applying for housing, or potential employer know for sure? I don’t think so. Social labels are powerful.
THANKYOU!!
Oh it was definitely a stressful situation. I actually had developed a rash a few days before, and it went away a week after the assessment. So even though my anxiety wasnt that bad, my body clearly reacted a lot.
Did you have any plans regarding a negative outcome. I’m due my first remote assessment tomorrow with a ADOS-2 assessment next month. I can relate to a lot of things within the questionnaires but I’m worried I might come out with a negative diagnosis
Nope - was in such a state about it that I couldn't think ahead at all, no plans for other outcomes at all. Was all a bit of a blur really. Good luck tomorrow!
UPDATE was a painful experience to be honest. The wife sat with me and talking to the doctor and actually saying the things that I’ve done and noticed was not a nice experience. I can relate to a lot of the symptoms but am worried about it being imposter syndrome. ADOS-2 in 2 1/2 weeks so we’ll see how that goes. Just thinking 24/7 about it all now which is draining to say the least.
@@RetroGlide08 have a look at this if helpful, I've been meaning to do a follow up video with a bit of this and talking about it. It's a guide for those DOING an ADOS-2 assessment. I know I for one would have found this really helpful ahead of mine to have a bit more predictability around the likely questioning: www.rcpsych.ac.uk/docs/default-source/members/sigs/neurodevelopmental-psychiatry-special-interest-group-ndpsig/ndpsig-autism-diagnostic-interview-guide-2.pdf
Thank you very much
🏆 Great Video
gonna binge on this channel it seems
I just had my assessment today and also had the “boy with the weird dream” story that I had to finish making up and I’m sure my assessor thought it was the most boring story in the history of storytelling. I was supposed to get results on the 29th, but had to reschedule due to another appointment and now have to wait until the end of March, so nearly two months to get results and I’ve already been stressing over the entire thing and going from “is it autism?” to “am I just an unempathetic or situationally empathetic sociopath with OCD, anxiety, and a bit of depression and trauma lumped in?” or just a combination? At this point, I have no clue and I worry that I did mask too much because I didn’t fidget as much as I normally would and I didn’t get to go as in depth as I thought they would. I’m also curious if they actually go over the questionnaires or if I just took all of them and never find out what the meaning of any of them actually was. At the results appointment, do they actually discuss it, or do they just say well, this is what we saw, but not go over the details? I’m confused by the process and curious. Now I have many weeks to overthink the whole situation.
So, with mine (private assessment) , I never actually got a results appointment, just got sent the results of the assessment by email, pondered it on my own for a long time, didn't really 100% understand the results and the recommendations, esp around the co-occurring anxiety disorder diagnosis I got alongside ASD, had questions, ASKED for a follow up appointment, and then got one to discuss and ask questions. But I was a bit left on my own to absorb everything. The follow-up to mine was a bit of a mess, to be honest, and I hope yours goes smoother and with more care. The fact you're actually getting a results appointment bodes well, but sorry you have such a long wait. All the best!
@@amineurodivergent thank you! I’m hoping so! My appointment is rather late in the day so I’m not sure how in depth it can be. I did leave them a whole binder of items to scan into my file that I’d brought to my appointment including just self tests that I’d done and school report cards, some pictures at different stages so they could see those and have those and my best friend and my mother were both emailed questionnaires. Also, the doctor had the assessor video the whole thing and wasn’t in the room so I thought that was odd and I’m not sure not being there she’d catch everything. I work overnight shifts and took of work this week, but wasn’t quite able to fix my schedule ahead of the appointment and went in with about 5 hours of sleep, but during prime sleeping time for me and was there from 8:15am to 3:30pm with an hour lunch break. From 1 to 3:30 it was all questionnaires and by the end, I was basically nodding off over the iPad they gave me to finish the questions and pulling my hair, so your trichotillamania video was definitely on point there. I’ve had that forever. Anyway, thanks again! Your videos that I’ve seen so far(I just found you last night as a suggested) have been helpful!
Thanks for this video. It was really helpful in prepping me for the assessment. Formally diagnosed yesterday (age 55)
Congrats - hope you're feeling good about everything!
Very helpful. Thank you.
Wow, that was point for point my experience and my thoughts going through the process. Only that I had to wait 5 weeks to get the result. Officially diagnosed since last Thursday now.
Congrats!
I’ve got the assessment in a couple of weeks and I’m sooooo stressed and anxious. I need to structure my thoughts so I can make specific notes. Did you use any particular tools / documents etc to help you to pull out certain traits/examples? With my adhd assessment I found basically exactly what they were going to ask me, so I could make very clear notes under each heading/subheading. I struggle to bring things to the front of my mind without processing time, so worry that without this, I’m going to do myself an injustice. Is there anything like this for this assessment do you know please? Thank you and I loved the video. It was really helpful 😊
Hey, I didn't know this document existed when I did my ADOS-2 - part of my anxiety in advance of it was not knowing what I was going to be asked. There are two elements to the ADOS-2, the practical observation stuff I mention in my video and the interview. This interview guide for psychiatrists I'm linking is the closest thing I've been able to find for what I think you're asking about - the questions/ prompts in green are the ones they use as a guide to interviewing adults for the ADOS-2. I hope this might be useful and good luck with your assessment! www.rcpsych.ac.uk/docs/default-source/members/sigs/neurodevelopmental-psychiatry-special-interest-group-ndpsig/ndpsig-autism-diagnostic-interview-guide-2.pdf?sfvrsn=1dc6557_2
Thank you.
Im in Glasgow and on the waiting list, do you mind sharing which company you used for your assessment?
Mine was in London and it was just called the Private Therapy Clinic. The one for ADHD I did online was called The Blue Tree Clinic, which overall I would say was better in terms of follow up etc.
I’m using Diverse Diagnostics who are in Glasgow. They contract out the ADOS tests - a mixed bag of assessors.
Thank you so much - this has been the most helpful of all the videos I've watched on the subject
What if I was a quiet child and never really communicate that I am overstimulated by whatever? This will make the testing difficulty when my mother has to anser questions, I guess. I am afraid of a wrong diagnose because I never talked about my issues that much as a child.
This was exactly me - I hid everything from a very young age and NO ONE knew how badly I was struggling. It was almost a point of pride for me how well I hid it all, until I burned out. I don't know in which country you're based, but my main advice would be talk to the healthcare provider you're considering doing your assessment with early about this and discuss possible alternative approaches to assessment that don't involve third parties and focus more, for example, on an assessor or psychiatrist talking more extensively with just you about your childhood experiences. They do this, for example, with adults getting an assessment who's parents aren't alive anymore and don't have that many childhood acquaintances. Anything is possible, there's definitely wiggle room, but you may have to actively push for the approach that works best for you and then lead the conversation towards that. Good luck! This approach may not work depending on how flexible or inflexible your assessment/ healthcare provider is, but this is the best advice I can think of, from my perspective, and it worked for me.
Not at all a long video. I partly wish I had watched this before the ADOS 2 assessment earlier this month. The tasks are questions are designed for North American children under the age of eight. I had done research and knew exactly what to expect. Several of the tasks I refused to do and explained why, emphasising that they were demeaning to a fifty nine year old. The stuck with the script, even showing me how she would do the tasks - it was cringeworthy. She cajoled me as you would a pre school child. I almost lost it but tried to keep control and repeated the word No. I finally had to equate her behaviour with the Me Too Movement and said to her that as a woman she ought to understand that No means No.
As an aside - the area of eye contact. Again this is culturally biased towards a North American subject. The more I analysed the tasks and questions, the more I saw it as being prejudiced against societal norms in other cultures.
I related to 95% of your carefully thought out video. Thank you! I too emailed the clinic and received a reply which added fuel to the fire. I’ve spent the past week working on a follow up email. My final assessment is in two weeks time, I’m told this will primarily be looking for my agreement with observations that have been made by the two assessors. Whether or not they take into account my emails, I don’t know.
I found the ados so tiresome and emotionally draining. I LOVE taking psychometric tests but sitting there feeling your every microexpression is being assessed and judged ... i had a hard time supressing stims forcing eye contact which made me feel like i was exaggerating my symptoms but i was just really focused on not getting the tasks "wrong" while not realising its not about the ability to complete the task as such.
Same. LOVE psychometric and Mensa-style tests and could do them all day but there's something very unsettling about being observed. I think we're like quantum particles that can be multiple things at once, but when we're under the gaze of observation we have to settle on being one thing and we're more than that. Being observed not under my own terms (like.. these videos are fine because it's my decision whether to hit publish or not) kind of gives me the ick, to be honest, and the ADOS is that in a nutshell. I heard from someone privately who's clearly neurodivergent but their ADOS arbitrarily said no. All this has to change.
@@amineurodivergent The autism uncertainty principle I love it 🤣 ! I get that if the ados is difficult and stressful that's indicative of the fact that it's challenging us to do things that are difficult for us due to autism but there really does have to be a way that doesn't lead to shutdown/meltdown and a spiral of rumination afterwards surely.
@@kristalcampbell3650 100%. There has to be a better, less stressful was for helping people understand they have a different type of brain to most people. There are millions of us. What's happening now isn't the right way.
what's the cutoff score for autism in the ADOS-2?
It's more subjective based on the practitioner's assessment, I think, as opposed to some of the self-tests that give a specific indicative score range. The assessment certificate has individual component scores for Communication, Reciprocal Social Interaction, Imagination/Creativity, and Stereotyped Behaviour and Restricted Interests. You've flagged more areas of uncertainty around the ADOS, though, I might try to dig a bit deeper and do a follow up video on this, from the assessor's perspective, which might hopefully be useful. Thanks for the question!
Going for my assessment in a few weeks and you really put me at ease. I went for consultation with a psychologist last year that specialises in Autism & ADHD and she used about 5/6 questions from the ADOS and was able to tell me she believed I had Autism and possibly ADHD. I concur with all the worries about lists, questions and imposter syndrome (...Hello darkness my old friend), and the bottom line is they know what they are looking for. I've enough life experience to know when to trust a process and when not to. After listening to what you said I feel I'm back on track again as I can relate to a number of things you mentioned. I feel more grounded now and not over thinking the assessment... so thank you.
You're very welcome - all the best for your assessment when it comes. Just be honest about your challenges and anxieties, don't mask, if you're nervous or anxious don't try to hide it and as you say - trust the process. Good luck!