Great video! I can so relate to just wanting to talk about my own special interests, and when they say something about their own, "oh that's nice...." 😆 I've been in the pre-diagnostic meetings this week, and next week I do the ados-2. It helps a lot to hear you talk about it, so thank you. Also, I realize I've been masking in the sessions this week. I mean... I don't even know how to "unmask" after decades of trying to be normal... I'm trying to let my weirdo flag fly but it's not something I'm used to.
I had mine today. I hated it, it was stressful and fast, and i kept crying and apologising because i couldnt think as quick as she wanted me to. The book was weird, i wasnt sure what was going on. The tooth brushing was very bad, the picture of america i spotted straight away. She said she'd been and i hesitated, then my mask kicked in and i asked her where out of politeness! I spotted the idiom but took a while to explain what it meant. I only used 3 of my 5 objects i forgot the other 2. I guess we will wait and see. Thanks for the video x
Well done for getting through it, it's a massive challenge to do it and as much as it is hard, you've done it now, treat yourself to something that will make you feel better because you've done the hard bit. The wait can be frustrating to hear back, but it will be worth it once you know for certain. I hope you don't need to wait too long for your results - I know this is impossible but try not to focus on it now until you hear back.
The storytelling bit was fun - I loved it, I don't think I gave a very good story but it was fun pictures. For me it was the questions about my family and friendships that were really difficult and remembering my past and how I felt about things was really hard. My assessor gave nothing away so I was so nervous, I had to wait 9 weeks for the return of my diagnosis though so that was really hard to deal with.
I was tested using ADOS 2, I'm unsure if it was module 4 because I've been assessed through CAMHS not AMHS but I was told by my assessors my interview was tailored more towards the assessment of an adult rather than I child because I'm 17 years and 10 months old, however since I'm under CAMHS still I did not get the choice of communication method or any initial information going in so I genuinely had no clue what it was gonna be like which put me on edge, I personally found that they were trying to in some ways prime certain reactions, I mentioned I had a boyfriend and the first thing she said to me was "how do you know he's your boyfriend?" which fully confused me because that's such an odd question, same with questions like "what is friendship?" and constantly being told "you're doing great" which I'm unsure what that means, I mostly responded to that with thank you or laughter because I've developed this habit of laughing at things I don't understand to appear more socially appealing which I didn't drop in the assessment because it's extremely ingrained in me a lot of questions I was asked were emotion based questions I think to interpret how I experience and view emotions as well as the imagination games in which I just described what I could see in the pictures because I couldn't think of something more interesting for the life of me, I was very on edge the whole interview but I am very good at communicating with strangers because its part of my job which is very exhausting because it is an act a lot of the time but I'm unsure if that affected anything. That was done in august and I still haven't heard anything back from them, I've asked my mom to contact them monday because I cannot contact them myself which is extremely frustrating and I'm beginning to become stressed and anxious being an overthinker as to if they think I have autism or not since my understanding of autism has been a part of my life for nearly 4 years now (I've waited 3 years for assessment) and I'm unsure how I'd cope if it came back I wasn't autistic, thank you for this video! Learning a little more even after I've been assessed definitely helps calm my nerves
Hiya, Thank you so much for commenting and I am glad the video was helpful to you. As you are over 16 years old and from what you have said, would be considered to be more than moderately independent, it is likely that you had the ADOS2 Module 4 assessment. As you have mentioned CAMHS and the longer waiting period (3 years) for assessment, I think you are probably from the UK and that you have accessed the assessment through the NHS. Sorry if I have got that wrong as I am just assuming. Great that you have asked your mum to contact your assessment team on Monday, the NHS often need a push and it is likely they have either not got your result yet or may just be waiting on the multi-disciplinary team decision which is necessary for a comprehensive diagnosis but unfortunately requires a lot of very busy medical professionals to be in the same meeting at the same same time so can take a long time, especially with the NHS as they are so over stretched right now but they will give you an honest update on where your assessment is and your mum will give them a nudge, just by contacting them so likely to remind them they need to do the meeting. The NHS is very slow, it is not on purpose, they are very under funded and have a huge amount of pressure on them, I do wish they would update people more as this will really help for us over thinkers but it doesn't mean anything other than they are busy, in fact, if the assessor felt you were definitely not autistic, a multi-disciplinary meeting may not even be necessary so a longer time, although utterly annoying and heart wrenching, may be a good sign. I think the assessor saying you are doing well meant they were saying you were doing well to get through it as it is a difficult process. The questions they ask are weird, they are purposefully so, they want to see what your response is and the fact you found them confusing is probably telling them a lot. Obviously, I am not a professional and I am not able to diagnose someone, certainly not from a message/comment, but you have said things in you description of your assessment that I think make it very clear why you have had the assessment (in a very good way). Always remember that self diagnosis always comes before a clinical one when you are diagnosed later in life and you have clearly made that diagnosis, self diagnosis is valid, and accepted within the community so welcome to the family :). The clinical diagnosis solidifies things but remember, in the unlikely event that this assessment comes back as not what you are expecting, you are already part of the community (this message shows that) and you are always entitled to a second opinion, if that is required: 1) you will be an adult at that point (over 18) so you will also be able to advocate for yourself as well as having your family there as well which is an added voice outside of assessments that it sounds like you currently don't have due to our care system but clearly have a support with your mum. 2) you can request a Right to Choose second opinion - this means you can speak to your GP if the assessment does not go the way you expect, they can refer you to any service that you want that is private but is part of right to choose so you can research an organisation that suits you and the NHS fund that through referral (this is also, usually, much quicker). In 2 months you will be discharged from CAMHS (that sounds awful but just means your details will be passed on to AMHS) and you will have your mum (who sounds very supportive) as well as your own voice, double the the voice, double the power :) Don't ever give up, if you know, you know and you clearly know yourself and your own experience and moving forward, into your adulthood, you will be able to voice that and people will listen, you just may have to speak firm and stand up for yourself when people try to invalidate your reality but you are taking great steps and there is nothing more amazing that owning who you are, even if others don't validate it - a diagnosis is a piece of paper that confirms something you have already worked out for yourself, it does not change your lived experience. I hope this is helpful, please keep me informed on how things go :)
@OneAutisticPerson thank you for the kind words!! I initially read this when you replied and originally intended to reply when I got my report back, but I've found out a little more information, and I may not get that back for a little longer. My mom managed to speak to my case worker and turns out she's completely swamped with cases of young children at the moment so I've been shoved to the back again, she thinks the board is going to hold a panel meeting to discuss all the evidence they have to support a diagnosis late October but this could be pushed back to November, good news is I should have an answer before December so I have a few weeks to go! Your reply gave me a lot of comfort because, yes, it is nerve-wracking to not know what's going to be the outcome, but if its not what I expected I will probably go back to my doctor and try for a second opinion, my worker did say to me she thinks I have autism but whether I fit all the categories the DSM requires she isn't sure and I may be missed by the system, I believe it is flawed but autism is a tricky thing and making an assessment that would pick up and fit absolutely everyone with no issues would be extremely challenging!! I'll be sure to update you again when I get the feedback from the panel
I'm glad you have had the update, sometimes just knowing it will take longer than you thought is much better than the not knowing what's going on. If you are anything like me, the unknown is torture for me and I feel better just knowing, even if it isn't what I wanted to hear. I look forward to hearing how it goes 😀
@OneAutisticPerson I got a call back from my case worker earlier today, and they had the meeting. They've come to the conclusion that I'm autistic and I'm now officially diagnosed! I'm just waiting for my report to come in the post and some other support information since they don't have anything to do with you after the diagnosis, I feel a lot of closure, I was thrown a bit off guard since they'd initially said it'd take longer than what it did but I'm ultimately just happy!
Hey, Sorry, I somehow didn't see your reply until now. That's great news! It is strange at first as you get the diagnosis and it is a little but like...now what? Things will all fit in after a while and it will all settle down and you'll be able to see where your support needs are. I hope it all goes well moving forward for you 😀
My son (21) has been to 5 or 6 different therapists or psychologists, none of which were Autism experts. It was a shot in the dark in our search for a proper (clinical) evaluation or assessment. It's been a 2 year journey. Everyone has kept saying ADHD which has to do with hyperactivity, I think. I've been trying to find the right provider who can administer the ADOS-2 test, module 4 as you say (for adults). I suspect that everyone who leans on ADHD for my son is because they're not trained or licensed with the ADOS test. Is that a fair suspicion ? Still searching the right provider/tester for my son. Many providers will "yes" me only to take in a new patient, bill my ins company, take the out of pocket money but not giving us the support diagnosis we think will help with resources, group therapy needed post-diagnosis.
Hiya, Can I ask where you live, assessments a services are so different depending on location and I don't want to give improper advice. I would so, overarchingly, always go with a specialist that has a good understanding of autism/neurodivergent people as mamy mental helath professionals lack in this area and often misdiagnose due to lack of knowledge. Also, just on a side note, people often think thay ADHD and Autism are opposites and very different but they have many similarities but they present slightly differently. Hyperactivity is one potential aspect of ADHD but it is a slightly outdated and flawed name for a much more complex condition. Their may be Hyperactivity but there may not be, there may be hyper focus (extreme focus) but there could be hypo focus (lack of focus). Although both conditions have been diagnosed for a long time, we are still learning and the last decade has been a massive learning curve in the neurodivergent diagnosis criteria. Sorry, I don't feel I'm being much help, my main point is defintely speak to assessors who have knowledge of neurodevelopment as a whole rather than generalised psychological or psychiatric knowledge as that often leads to misdiagnosis.
@@OneAutisticPerson Thank you. I'm in Central Florida. There seems to be a lot online for children but very little for adults. The ones I have found, as I said, have said "yes I can help ..." only to come up empty.
Great video! I can so relate to just wanting to talk about my own special interests, and when they say something about their own, "oh that's nice...." 😆 I've been in the pre-diagnostic meetings this week, and next week I do the ados-2. It helps a lot to hear you talk about it, so thank you.
Also, I realize I've been masking in the sessions this week. I mean... I don't even know how to "unmask" after decades of trying to be normal... I'm trying to let my weirdo flag fly but it's not something I'm used to.
I had mine today. I hated it, it was stressful and fast, and i kept crying and apologising because i couldnt think as quick as she wanted me to. The book was weird, i wasnt sure what was going on. The tooth brushing was very bad, the picture of america i spotted straight away. She said she'd been and i hesitated, then my mask kicked in and i asked her where out of politeness! I spotted the idiom but took a while to explain what it meant. I only used 3 of my 5 objects i forgot the other 2. I guess we will wait and see. Thanks for the video x
Well done for getting through it, it's a massive challenge to do it and as much as it is hard, you've done it now, treat yourself to something that will make you feel better because you've done the hard bit. The wait can be frustrating to hear back, but it will be worth it once you know for certain.
I hope you don't need to wait too long for your results - I know this is impossible but try not to focus on it now until you hear back.
I'm just about to have my assessment on Tuesday so this was really interesting, thank you!
Good luck, please do keep me updated on how it goes - just relax and be yourself :)
The storytelling bit was fun - I loved it, I don't think I gave a very good story but it was fun pictures.
For me it was the questions about my family and friendships that were really difficult and remembering my past and how I felt about things was really hard.
My assessor gave nothing away so I was so nervous, I had to wait 9 weeks for the return of my diagnosis though so that was really hard to deal with.
I was tested using ADOS 2, I'm unsure if it was module 4 because I've been assessed through CAMHS not AMHS but I was told by my assessors my interview was tailored more towards the assessment of an adult rather than I child because I'm 17 years and 10 months old, however since I'm under CAMHS still I did not get the choice of communication method or any initial information going in so I genuinely had no clue what it was gonna be like which put me on edge, I personally found that they were trying to in some ways prime certain reactions, I mentioned I had a boyfriend and the first thing she said to me was "how do you know he's your boyfriend?" which fully confused me because that's such an odd question, same with questions like "what is friendship?" and constantly being told "you're doing great" which I'm unsure what that means, I mostly responded to that with thank you or laughter because I've developed this habit of laughing at things I don't understand to appear more socially appealing which I didn't drop in the assessment because it's extremely ingrained in me
a lot of questions I was asked were emotion based questions I think to interpret how I experience and view emotions as well as the imagination games in which I just described what I could see in the pictures because I couldn't think of something more interesting for the life of me, I was very on edge the whole interview but I am very good at communicating with strangers because its part of my job which is very exhausting because it is an act a lot of the time but I'm unsure if that affected anything.
That was done in august and I still haven't heard anything back from them, I've asked my mom to contact them monday because I cannot contact them myself which is extremely frustrating and I'm beginning to become stressed and anxious being an overthinker as to if they think I have autism or not since my understanding of autism has been a part of my life for nearly 4 years now (I've waited 3 years for assessment) and I'm unsure how I'd cope if it came back I wasn't autistic, thank you for this video! Learning a little more even after I've been assessed definitely helps calm my nerves
Hiya,
Thank you so much for commenting and I am glad the video was helpful to you.
As you are over 16 years old and from what you have said, would be considered to be more than moderately independent, it is likely that you had the ADOS2 Module 4 assessment.
As you have mentioned CAMHS and the longer waiting period (3 years) for assessment, I think you are probably from the UK and that you have accessed the assessment through the NHS. Sorry if I have got that wrong as I am just assuming.
Great that you have asked your mum to contact your assessment team on Monday, the NHS often need a push and it is likely they have either not got your result yet or may just be waiting on the multi-disciplinary team decision which is necessary for a comprehensive diagnosis but unfortunately requires a lot of very busy medical professionals to be in the same meeting at the same same time so can take a long time, especially with the NHS as they are so over stretched right now but they will give you an honest update on where your assessment is and your mum will give them a nudge, just by contacting them so likely to remind them they need to do the meeting.
The NHS is very slow, it is not on purpose, they are very under funded and have a huge amount of pressure on them, I do wish they would update people more as this will really help for us over thinkers but it doesn't mean anything other than they are busy, in fact, if the assessor felt you were definitely not autistic, a multi-disciplinary meeting may not even be necessary so a longer time, although utterly annoying and heart wrenching, may be a good sign.
I think the assessor saying you are doing well meant they were saying you were doing well to get through it as it is a difficult process. The questions they ask are weird, they are purposefully so, they want to see what your response is and the fact you found them confusing is probably telling them a lot.
Obviously, I am not a professional and I am not able to diagnose someone, certainly not from a message/comment, but you have said things in you description of your assessment that I think make it very clear why you have had the assessment (in a very good way).
Always remember that self diagnosis always comes before a clinical one when you are diagnosed later in life and you have clearly made that diagnosis, self diagnosis is valid, and accepted within the community so welcome to the family :). The clinical diagnosis solidifies things but remember, in the unlikely event that this assessment comes back as not what you are expecting, you are already part of the community (this message shows that) and you are always entitled to a second opinion, if that is required:
1) you will be an adult at that point (over 18) so you will also be able to advocate for yourself as well as having your family there as well which is an added voice outside of assessments that it sounds like you currently don't have due to our care system but clearly have a support with your mum.
2) you can request a Right to Choose second opinion - this means you can speak to your GP if the assessment does not go the way you expect, they can refer you to any service that you want that is private but is part of right to choose so you can research an organisation that suits you and the NHS fund that through referral (this is also, usually, much quicker).
In 2 months you will be discharged from CAMHS (that sounds awful but just means your details will be passed on to AMHS) and you will have your mum (who sounds very supportive) as well as your own voice, double the the voice, double the power :)
Don't ever give up, if you know, you know and you clearly know yourself and your own experience and moving forward, into your adulthood, you will be able to voice that and people will listen, you just may have to speak firm and stand up for yourself when people try to invalidate your reality but you are taking great steps and there is nothing more amazing that owning who you are, even if others don't validate it - a diagnosis is a piece of paper that confirms something you have already worked out for yourself, it does not change your lived experience.
I hope this is helpful, please keep me informed on how things go :)
@OneAutisticPerson thank you for the kind words!! I initially read this when you replied and originally intended to reply when I got my report back, but I've found out a little more information, and I may not get that back for a little longer. My mom managed to speak to my case worker and turns out she's completely swamped with cases of young children at the moment so I've been shoved to the back again, she thinks the board is going to hold a panel meeting to discuss all the evidence they have to support a diagnosis late October but this could be pushed back to November, good news is I should have an answer before December so I have a few weeks to go! Your reply gave me a lot of comfort because, yes, it is nerve-wracking to not know what's going to be the outcome, but if its not what I expected I will probably go back to my doctor and try for a second opinion, my worker did say to me she thinks I have autism but whether I fit all the categories the DSM requires she isn't sure and I may be missed by the system, I believe it is flawed but autism is a tricky thing and making an assessment that would pick up and fit absolutely everyone with no issues would be extremely challenging!! I'll be sure to update you again when I get the feedback from the panel
I'm glad you have had the update, sometimes just knowing it will take longer than you thought is much better than the not knowing what's going on.
If you are anything like me, the unknown is torture for me and I feel better just knowing, even if it isn't what I wanted to hear.
I look forward to hearing how it goes 😀
@OneAutisticPerson I got a call back from my case worker earlier today, and they had the meeting. They've come to the conclusion that I'm autistic and I'm now officially diagnosed! I'm just waiting for my report to come in the post and some other support information since they don't have anything to do with you after the diagnosis, I feel a lot of closure, I was thrown a bit off guard since they'd initially said it'd take longer than what it did but I'm ultimately just happy!
Hey,
Sorry, I somehow didn't see your reply until now.
That's great news! It is strange at first as you get the diagnosis and it is a little but like...now what? Things will all fit in after a while and it will all settle down and you'll be able to see where your support needs are.
I hope it all goes well moving forward for you 😀
I've made the ADOS2 in person testing, it was very akward, I went thru all the things pretty fast I would say but it felt really weird to me.
Thank you for your comment.
I hope you don't mind me asking, which bit did you find awkward, or was it the entire assessment?
I was assessed with ADOS 2 Module 4 and the story part was really strange and made no sense to me haha.
Great video, really good look at the ADOS 2 ❤
Thank you :)
My son (21) has been to 5 or 6 different therapists or psychologists, none of which were Autism experts. It was a shot in the dark in our search for a proper (clinical) evaluation or assessment. It's been a 2 year journey. Everyone has kept saying ADHD which has to do with hyperactivity, I think. I've been trying to find the right provider who can administer the ADOS-2 test, module 4 as you say (for adults). I suspect that everyone who leans on ADHD for my son is because they're not trained or licensed with the ADOS test. Is that a fair suspicion ? Still searching the right provider/tester for my son. Many providers will "yes" me only to take in a new patient, bill my ins company, take the out of pocket money but not giving us the support diagnosis we think will help with resources, group therapy needed post-diagnosis.
Hiya,
Can I ask where you live, assessments a services are so different depending on location and I don't want to give improper advice.
I would so, overarchingly, always go with a specialist that has a good understanding of autism/neurodivergent people as mamy mental helath professionals lack in this area and often misdiagnose due to lack of knowledge.
Also, just on a side note, people often think thay ADHD and Autism are opposites and very different but they have many similarities but they present slightly differently. Hyperactivity is one potential aspect of ADHD but it is a slightly outdated and flawed name for a much more complex condition. Their may be Hyperactivity but there may not be, there may be hyper focus (extreme focus) but there could be hypo focus (lack of focus). Although both conditions have been diagnosed for a long time, we are still learning and the last decade has been a massive learning curve in the neurodivergent diagnosis criteria.
Sorry, I don't feel I'm being much help, my main point is defintely speak to assessors who have knowledge of neurodevelopment as a whole rather than generalised psychological or psychiatric knowledge as that often leads to misdiagnosis.
@@OneAutisticPerson Thank you. I'm in Central Florida. There seems to be a lot online for children but very little for adults. The ones I have found, as I said, have said "yes I can help ..." only to come up empty.