This is so helpful. I've literally been waiting for someone to make videos like this so I can prepare myself to make the appointment. I've been so scared to go through with it because I'm so worried they're just not going to take me seriously because of the same things you were saying, like I have a degree, live independently, I have a job etc. So this has been really helpful to relate to. Thank you
I'm in Canada, and when I started my diagnosis journey last year, the only way to access adult assessment in my province was privately. I felt the same way, afraid that they wouldn't be able to see what I felt on the inside, because I'm married, have a degree, and my autistic traits are pretty subtle if you don't know what to look for. Thanks for sharing your experience; it's videos like this that made me feel seen for the first time, and introduced me to a lovely community where my authentic self actually makes sense ♾️🌈🧠
Ive had my referral for adhd and autism lost 3 times here in London. I rang again today and the same thing has happened again. I've had to fight so hard - and yes the process is outdated and out of touch. I am burned out. I am heartbroken for people less able to communicate their experiences but equally the better we mask, the harder it is to explain what were experiencing. Im going to document and share my journey also and do what i can to push for change. I am a woman on a mission and I will use my voice just like you are bravely doing. Sending love, light and endless empathy x
I'm now on the waiting list for an assessment (2 years apparently - I'm toying with the idea of going private but to be honest, my enquiries haven't been dealt with very well by local private providers!). I've already had questionnaires through the post for a parent/sibling to answer about my childhood. But I'm 44: my Mum passed away a few years ago; my Dad is working class and old-fashioned so wasn't massively involved with my upbringing and my older brother always says he can't remember things from when we were children. I also think that the types of questions don't account for what the people answering might be like. For example: "did they need routine and structure growing up?" but if the parents were autistic - which is more likely than with someone not going for an autism assessment - then there might already be structure that worked for the person being assessed.
I am at the stage in seeking out an autism and ADHD diagnosis where I have just planned to call the GP on Friday to ask for an appointment to talk about the possibility of a referral. Thank you so, so, so much for sharing your experience, Ella. This video is/ will be incredibly helpful to others in this situation, which it appears there are hundreds of thousands of people currently realising that they may be neurodivergent. We have to keep speaking out and simply sharing our real-life experiences.
Thank you for this. I’m terrified of calling my GP but this helped me understand the NHS process a lot better and I feel more comfortable now I know what will happen.
Thank you so much for sharing about your experiences. This was super helpful :) I am currently waiting for a letter from my local assessment team and I’m so anxious about the entire process right now, so it’s great to be able to get some insight into what to expect/prepare for 💚
Wow you had to jump through so many hoops it seems! I live in Newcastle too, and I saw my GP and she helped me refer myself after asking me why I thought I had ASD, I then got forms to fill in and now am awaiting an appointment, granted that will take up to 2 years though :/ I'm really nervous, I feel like I need to prepare so many examples and stuff just for a better 'chance' to be seen as having ASD by whoever is assessing me. So stressful.
Hey Ella, we’re in the same situation, I have mine on Tuesday 11am via Zoom with clinic partners too. I had a phone call last week also. I’m from Durham and you’ve really brought me comfort with this video to know I’m not alone, thank you xxx
I had my assessment today, I would be happy to share my experience, I was so anxious going into the unknown but she was so lovely. It’s seems awfully condescending though xxx
Thank you so much for posting this with your journey, I had a letter saying I’ll be allocated an appointment back in October but it did pre warn me it could come after January. Wondering whether to call the team but worried it’ll be seen as pestering… I’m being referred for ADHD and autism but they’re focusing on ADHD first and then will put on waiting list for autism if they see enough when I’m in my other assessment. Can’t wait to see your next video, really appreciate this and all your other content. Thank you again for sharing 💛
It's interesting to hear how different people's experiences are. I had one phone call then an in person appointment where they referred me. Then a month later I had a cahms phone call who have now put me on a 9 month waiting list which should get me seen in June this year
I was tired by just listening to all their weird ways to get in contact with you. Geez… and those should be the ones that know about autism. I am in Italy and almost 40, got diagnosed last week but I am also waiting for the response of another specialist. I had a really nasty burnout from years of work and social fatigue, I was so desperate I called multiple doctors for immediate help but only these two replied and put me in waiting list. But they both gave me zero informations about an estimate date for the first appointment… so I booked with both. Also… I definitely am plagued by impostor syndrome and think I need confirmation of the first opinion… even if I was “a very obvious case” in their opinion… facepalming really hard). Anyway, both the psychiatrist that diagnosed me and the psychologist that is still evaluating me are independent specialist. I needed immediate intervention and couldn’t wait for the national health service which is way slower and often run by doctors who don’t know level 1 autism in adults (psychiatrist warned me about this). So I still need to contact the national service to “validate” the opinion of my doctors, in order to access the (very little) support I should receive. Sometimes I wish they diagnosed me as a child, but then I remember how mental health was addressed back in the ‘80s … scary stuff. Best of luck to you, I really hope you’ll meet someone with enough sensibility to help you navigate this circus of a system. Take care of yourself little one
I was born in the mid 50's in the U.S.. An autism diagnosis (if it even existed) would be just as likely to have resulted in being sent off to a state mental hospital, if the social and behavioral issues like those I had exhibited had been identified and associated with a diagnosis. If you weren't "normal", then you were "abnormal" and there was no tolerance or support. If you could not manage your life and meet societal expectations, then off you went. Out of sight and out of mind. If not for excelling academically, and the frequent interventions by my family to prevent anything that might compromise their standing in the community... that may well have been my fate. So many of the struggles I have faced could have been lessened by common sense (someone else's, because I don't have any) accomodations. Like removing myself from an environment, when I realize I'm becoming overwhelmed and beginning to meltdown. Instead of pushing myself until I lose it completely, and then having to leave anyway. But... had I known then what I know now, my life could have been transformed. I simply did not recognize the patterns that my life followed, which have become so clear since I have researched and self assessed being autistic. It has been a life lived under seige. I don't have the thousands of dollars to book an an evaluation a year or more from now. I'm still searching for an accessible, affordable and qualified diagnosis. I guess I "need" the "official" validation to silence the internalized gaslighting and bullying of a lifetime. Those exasperated and accusatory pronouncements of "there's nothing wrong with you... just stop it". Whenever my inexplicable meltdowns and social issues caused problems. Or employers asking "why are you leaving, what can we do to convince you to stay?", a phone call that often led to my mute silence, after I had already fled. Usually after no more than a year of buzzing florescent lights and incessant bullying by co-workers. "High functioning" really means that you have no excuse when you fail to meet functional or social expectations. As best as I've ever managed, it has been a Sisyphian/Kafkaesque struggle. All of the preceding summed up to say... Ella has described the torment perfectly. Thank you.
I was told that I was different with every person, like a chameleon, when I was 17 or so... I’m 39 now and waiting for an assessment. This sounds truly painful 😞
This is so helpful. I've literally been waiting for someone to make videos like this so I can prepare myself to make the appointment. I've been so scared to go through with it because I'm so worried they're just not going to take me seriously because of the same things you were saying, like I have a degree, live independently, I have a job etc. So this has been really helpful to relate to. Thank you
I'm in Canada, and when I started my diagnosis journey last year, the only way to access adult assessment in my province was privately. I felt the same way, afraid that they wouldn't be able to see what I felt on the inside, because I'm married, have a degree, and my autistic traits are pretty subtle if you don't know what to look for. Thanks for sharing your experience; it's videos like this that made me feel seen for the first time, and introduced me to a lovely community where my authentic self actually makes sense ♾️🌈🧠
Ive had my referral for adhd and autism lost 3 times here in London. I rang again today and the same thing has happened again. I've had to fight so hard - and yes the process is outdated and out of touch. I am burned out. I am heartbroken for people less able to communicate their experiences but equally the better we mask, the harder it is to explain what were experiencing. Im going to document and share my journey also and do what i can to push for change. I am a woman on a mission and I will use my voice just like you are bravely doing. Sending love, light and endless empathy x
I'm now on the waiting list for an assessment (2 years apparently - I'm toying with the idea of going private but to be honest, my enquiries haven't been dealt with very well by local private providers!). I've already had questionnaires through the post for a parent/sibling to answer about my childhood. But I'm 44: my Mum passed away a few years ago; my Dad is working class and old-fashioned so wasn't massively involved with my upbringing and my older brother always says he can't remember things from when we were children. I also think that the types of questions don't account for what the people answering might be like. For example: "did they need routine and structure growing up?" but if the parents were autistic - which is more likely than with someone not going for an autism assessment - then there might already be structure that worked for the person being assessed.
I am at the stage in seeking out an autism and ADHD diagnosis where I have just planned to call the GP on Friday to ask for an appointment to talk about the possibility of a referral.
Thank you so, so, so much for sharing your experience, Ella.
This video is/ will be incredibly helpful to others in this situation, which it appears there are hundreds of thousands of people currently realising that they may be neurodivergent.
We have to keep speaking out and simply sharing our real-life experiences.
Thank you for this. I’m terrified of calling my GP but this helped me understand the NHS process a lot better and I feel more comfortable now I know what will happen.
Thank you so much... I'm on this journey with my 16 year old.. I've made a cuppa and some toast I'm all ears xx
Thank you so much for sharing about your experiences. This was super helpful :) I am currently waiting for a letter from my local assessment team and I’m so anxious about the entire process right now, so it’s great to be able to get some insight into what to expect/prepare for 💚
I'm in the same point in the process too, really kind of you to put this out there, I know I would feel all sorts of things by sharing these things.
Wow you had to jump through so many hoops it seems! I live in Newcastle too, and I saw my GP and she helped me refer myself after asking me why I thought I had ASD, I then got forms to fill in and now am awaiting an appointment, granted that will take up to 2 years though :/ I'm really nervous, I feel like I need to prepare so many examples and stuff just for a better 'chance' to be seen as having ASD by whoever is assessing me. So stressful.
Hey Ella, we’re in the same situation, I have mine on Tuesday 11am via Zoom with clinic partners too. I had a phone call last week also. I’m from Durham and you’ve really brought me comfort with this video to know I’m not alone, thank you xxx
I had my assessment today, I would be happy to share my experience, I was so anxious going into the unknown but she was so lovely. It’s seems awfully condescending though xxx
I really enjoyed this video. I honestly can't wait for more. Going through the exact same thing. I love these ❤
Thank you so much for posting this with your journey, I had a letter saying I’ll be allocated an appointment back in October but it did pre warn me it could come after January. Wondering whether to call the team but worried it’ll be seen as pestering… I’m being referred for ADHD and autism but they’re focusing on ADHD first and then will put on waiting list for autism if they see enough when I’m in my other assessment.
Can’t wait to see your next video, really appreciate this and all your other content. Thank you again for sharing 💛
It's interesting to hear how different people's experiences are. I had one phone call then an in person appointment where they referred me. Then a month later I had a cahms phone call who have now put me on a 9 month waiting list which should get me seen in June this year
I was tired by just listening to all their weird ways to get in contact with you. Geez… and those should be the ones that know about autism.
I am in Italy and almost 40, got diagnosed last week but I am also waiting for the response of another specialist. I had a really nasty burnout from years of work and social fatigue, I was so desperate I called multiple doctors for immediate help but only these two replied and put me in waiting list. But they both gave me zero informations about an estimate date for the first appointment… so I booked with both. Also… I definitely am plagued by impostor syndrome and think I need confirmation of the first opinion… even if I was “a very obvious case” in their opinion… facepalming really hard).
Anyway, both the psychiatrist that diagnosed me and the psychologist that is still evaluating me are independent specialist. I needed immediate intervention and couldn’t wait for the national health service which is way slower and often run by doctors who don’t know level 1 autism in adults (psychiatrist warned me about this). So I still need to contact the national service to “validate” the opinion of my doctors, in order to access the (very little) support I should receive.
Sometimes I wish they diagnosed me as a child, but then I remember how mental health was addressed back in the ‘80s … scary stuff.
Best of luck to you, I really hope you’ll meet someone with enough sensibility to help you navigate this circus of a system. Take care of yourself little one
I was born in the mid 50's in the U.S.. An autism diagnosis (if it even existed) would be just as likely to have resulted in being sent off to a state mental hospital, if the social and behavioral issues like those I had exhibited had been identified and associated with a diagnosis. If you weren't "normal", then you were "abnormal" and there was no tolerance or support. If you could not manage your life and meet societal expectations, then off you went. Out of sight and out of mind. If not for excelling academically, and the frequent interventions by my family to prevent anything that might compromise their standing in the community... that may well have been my fate.
So many of the struggles I have faced could have been lessened by common sense (someone else's, because I don't have any) accomodations. Like removing myself from an environment, when I realize I'm becoming overwhelmed and beginning to meltdown. Instead of pushing myself until I lose it completely, and then having to leave anyway. But... had I known then what I know now, my life could have been transformed.
I simply did not recognize the patterns that my life followed, which have become so clear since I have researched and self assessed being autistic. It has been a life lived under seige. I don't have the thousands of dollars to book an an evaluation a year or more from now. I'm still searching for an accessible, affordable and qualified diagnosis. I guess I "need" the "official" validation to silence the internalized gaslighting and bullying of a lifetime.
Those exasperated and accusatory pronouncements of "there's nothing wrong with you... just stop it". Whenever my inexplicable meltdowns and social issues caused problems. Or employers asking "why are you leaving, what can we do to convince you to stay?", a phone call that often led to my mute silence, after I had already fled. Usually after no more than a year of buzzing florescent lights and incessant bullying by co-workers.
"High functioning" really means that you have no excuse when you fail to meet functional or social expectations. As best as I've ever managed, it has been a Sisyphian/Kafkaesque struggle. All of the preceding summed up to say... Ella has described the torment perfectly. Thank you.
I was told that I was different with every person, like a chameleon, when I was 17 or so... I’m 39 now and waiting for an assessment. This sounds truly painful 😞
❤️❤️❤️❤️❤️you’ve got a brave heart
i just got my date for the assessment i'm feeling nervous, but i know i'm going to get more clarity :-( wish me luck