Autistic Diagnosis in my 40's - my experience of the assessment process
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- เผยแพร่เมื่อ 21 เม.ย. 2021
- Six months ago, I was diagnosed as autistic at the age of 44. It was a difficult process and I recorded this video describing my experience of an NHS assessment and then a private assessment, in the hope of helping other older women who are considering or going through the autism assessment process in the UK.
Feel free to comment, but please understand that I may not reply as this is difficult for me. I cannot give any more advice than the small amount I give in the video, as I am just an author and not an expert in the diagnosis of autism and ADHD. I just wanted to share my experience in the hope that other people who are going through something similar, or who are considering going through the assessment process later in life, feel less alone.
Also, just to be absolutely clear: I adore the NHS. I had a bad experience in the autism assessment process, but have benefitted from the medical care they provide on many occasions and it has always been superlative. They do seem to be a little bit behind in the diagnosis of autism in older women, however.
The chartered psychologist who carried out my assessment was Louise Hilliar, and her website is: www.louisehilliar.co.uk - feel free to contact her through her website if you would like to seek a private assessment too.
A couple of sites that might be helpful to you:
National Autistic Society: autism.org.uk
Autistic Women and Non-Binary Network: awnnetwork.org
If you'd like to find out more about my books after watching this, my website is: www.enewman.co.uk
I also have a Patreon: / emmanewman and I will make a dedicated post for this video there with the option for more discussion.
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Also a late-diagnosed autistic woman. I think many of us only get a diagnosis when we burn out or have some kind of breakdown. It does help to know what's at the root of the issues though. Thanks for this.
I agree!
I only went for assessments after I started to have clusters of depressive episodes after my attempts at masking became too strenuous and my mental health crashed. It does help to know that I know that my neurology is not typical. Now no longer attempt to mask and my mental health has improved and I now look at focusing on my strengths.
Totally agree. I needed to know why and wondered "What if I am right about it." Yes, I am right about it.
It took multiple break downs for me to get diagnosed at 57. I hit absolute rick bottom, and am still in burn out 7 months later.
@@ruthhorowitz7625 hello
I’m not a woman but I was diagnosed a few months ago at 38. I also had multiple depressions and constant anxiety issues. The diagnosis was extremely hard on me: I had a deep depression where I couldn’t get out of bed for several weeks. I just kept thinking about how my life would have been if I had known earlier. I also realized I was abused/gaslighted by the majority of people in my life. Since dumping these narcissistic losers I’m much happier.
Yes, there was also a distinct period of grieving along those lines for me too.
I have struggled with various mental health issues with incredible disruption to my life for many years and wish they had caught my issues when I was a kid like they do now. Or I had never listened to the doctor who prescribed me 100 Valium to "take as needed" at 28. Just to say I have some understanding of your frustration at 43.
But my real point is, I have a friend who is an undiagnosed autistic at 53 and so stubborn and belligerent that he is very unlikely to ever be. He has little money, has been alone almost his entire life, can't last beyond a few dates with a woman and lives partly in a fantasyland of his own creation to deal with the pain. He is insulting and argumentative with so many people. Just tonight he said something to me that would have been incredibly nasty coming from someone else. (Which is why I'm looking up this topic now.)
This life situation has gone on with zero change for the eight years I have known him and will probably go on for the rest of his life. So you are a good deal younger than him and are aware of your issues now. That at least is a very good thing.
♡
this comment resonates with my experience. I'm in my late 40's and undergoing diagnosis and it's been life changing which has been great but it also has been hard. The feeling of being gaslit and abused I totally, totally get. It got to the point where I'm very isolated socially as I just feel like no one understands me at all. I'm okay with my own company, but when I want some people contact it's hard to know who to trust.
I don’t think of this as an illness. It’s just a difference and the reason we struggle is because neuro typicals don’t get us.
You are so lovely. I am 46 years old and because of being almost 2 years into a “depression” I finally came to the realization that there was so much more going on than meets the eye. I have not been diagnosed, but I now know that I am in Autistic burnout. I realized this time that what I was experiencing was so beyond previous depression bouts because of the severity of what was happening to me. I used language such as I feel like I am regressing or going backwards as I cannot do or manage how I have in the past. Like you, I have achieved success, friends, and put on a flawless mask all my life. Like a chameleon, I could fit into any situation….until I couldn’t. I started to become super sensitive to loud noises, bright lights, touch - pretty much all my senses were screaming for less. Despite the fact that I have what looks on paper to be a wonderful life (and one I am very grateful for) my thoughts have been desperate. Feeling like I can’t do this anymore, everything is too hard, I can’t be the me I have been anymore. Absolute and complete exhaustion. No energy to do things I once loved. Wanting absolutely nothing but silence and my bed. It has felt so hopeless as the experience of joy and happiness and good times seem so far away (2 years into this). I have only just become aware of high masking late adult ASD diagnosis in females in the last 2 weeks. After all I have learned so far I already see myself very clearly in the information. So now at least there is a glimmer of light - hope that now maybe I can navigate this and get help to move forward. Thank you for sharing your story as it is also my story. I was diagnosed at a young age with generalized anxiety disorder as well. Medicated on and off for 20 years (now completely off as I knew it wasn’t the answer for me). Additional diagnosis of clinical depression. Completely missed as I had a stunning ability to appear like most people. Sending lots of love and gratitude your way. You are a beautiful human ❤
Wow do I relate to this. I’ve been struggling and think hormone changes and life changes have kicked me into burnout as well. It’s difficult to function. I’m sorry you’re feeling the same but appreciative of your share.
Thank you for sharing. I have been in a burn out for a few years. Since my boyfriend died, then my new husband couldn’t take me anymore… he left. Any little stressor sends me into a full melt down. I’m happy to know we are not alone.
“Absolute and complete exhaustion”
Same here. I’m 39 and have stayed in great physical shape but mentally I’m on empty in terms of energy. The masking and social strangeness all these years just has left me wondering why? And what now that we know we are autistic? It answers questions but also makes me more confused about a few things
35 years of hell. 2 years of looking into this. I've taken every ASD test I could find over the last 2 years and next Tue as a 35-year-old man I will be going several hundred KM away from where I live. To see someone who's an expert in this and speaks my language for my assessment. I can't imagine how it must have felt to have been knocked back the first time.
The end Result. I'm autistic.
Diagnosed at 66 after a lifetime of difficulty, 3 husbands, and two children who don’t really speak to me…. I’d love to help others avoid my experiences… thank you for your bravery!
I’m 68 and waiting for my assessment. Am I too old for all of this?
@@Catherine-cv1hj I can’t answer for you, but according to a neuropsychologist at May Clinic AZ- “You meet all the criteria, were diagnosed by a psychologist , and seem to be living satisfactorily- what more do you need, why spend the money?” Most of the women who participated in a recent study she completed of senior women w Aspergers were self diagnosed, and met all the criteria! For me it’s validation from husband & kids, but what the hey, I know where I stand & now speak up more for myself & tell people when I’m having a difficult time or just plan being my weird old Aspie self! Let me know what happens in you diagnosis process! I had 3 hours of cognitive testing, and it confirmed things that are consistent w Aspergers, aka ASD1…… 🙃 All the best from here in NV!
Yeah, I also don't speak to my mother anymore. My brother does, though. Mostly.
@@withyoctopus Oh I’m sorry, she must have hurt you very much- I’m assuming she has the ASD….. it’s hard, we all just do the best we can, right?
@@dianequigley8449 She's definitely a whole package. I assume ASD/ADHD/CPTSD and some serious coping mechanisms that grew into personality disorder and addiction. It never felt like she was doing her best because if that's her best, what's her worst? If that's love, what's hate then?
I hope I can be better for my son and he won't resent me so much.
I am 41 years old and today was the first day I realized I’m autistic. Thank you for your vulnerability and putting yourself out there and making me feel normal.
I became aware when it was pointed out to be at the age of 49 so you are not alone at being in your 40's and just finding out.
I'm 44 and was recently diagnosed Autistic, I'm also going through burnout. When I was 7 I was diagnosed with ADHD and have been living my life thinking all my issues were from that. As the process of finding out was unraveling hints and similarities I became increasingly obsessed with figuring it out, especially now since my symptoms were that of other autistics giving their lived stories on youtube. I was first diagnosed by my psychiatrist, then confirmed at a diagnostic center later on. Through the whole process, it's been really emotional, especially as all the puzzle pieces of my life are now clicking together and making sense. Thank you for telling your story, I found comfort in it.
I found this video after something VERY similar happened to me - just three days ago I went for an NHS assessment as a person in middle age. After a two-hour consultation, I was found ‘negative’ in diagnosis.
Key reasons given were ability to make eye contact, to hold a conversation (ask questions of the other person, observe turn-taking), and to maintain relationships (I was married, have children, and generally get on with my colleagues). None of this was explored in terms of how I have learnt to do these things as I’ve grown older - they did not come easily when younger, and socializing, eye contact, etc. and still tire me.
I was given questionnaires prior to the consultation and scored ‘highly’, some of these also completed by family members, but these were apparently not brought to bear.
Masking was not mentioned, though I did say I had learnt a lot of the skills into adulthood.
By the end, I also found the experience of consultation with a senior practitioner nurse ‘embarrassing and belittling’, feeling I had wasted their time, and also found it lacking in depth.
I felt a specific, narrow set of criteria were applied. Even a specific gesture was used - flapping a hand in front of the face (I make - and used to make more often - repetitive gestures, which may or may not be ‘stimming’, just not that specific one).
A lot of other things I said were also seemingly ‘ignored’, e.g. sensory challenges; problems forming and maintaining friendships and social anxiety; feelings of difference that led to bullying in childhood and adulthood; childhood challenges of isolation, school refusal, etc.; being poor at turn-taking without effort; difficulties with change and lack of order…
I have no idea whether I am autistic or not, but am left without confidence in the diagnostic process and confused. I cannot justify the cost of private diagnosis.
I don't think the process is set up for adults.
Thanks for the video. Though also generally an NHS fan, it's interesting to know this is a common experience.
This is terrifying. The possibility of such closed minded assessment scares me most of all. I have learned to mask well, it just costs me so much energy that I burn out.
Mine your life almost minus kids wife identical i would wen ur ready u like to be refferred 2nd assesment it a spectrum dont give up buddy im 52 like you i prefer peace and quiet and my bed
I just been diagnosed i pushed for it
I went through gp psycologist got referred to nhs trafford who outsourced my assesment to the owl center adults with autism a private company based up down the country i waited june 2022 to september they called took some history appointment jan 17 2023 diagnoises 2weeks later but every detail you mention i felt gone through i pushed to get recognise the biggest clue is in ur gp notes you alway getting diagnosed with anxiety depression when you feel you not it is link to autism just ocd depression anxiety self awareness reffered to as odd eccentric been through it but dont give up if yours wasnt done through the owl center request it as second opinion express you feel that you werent treated fairly i know it draining but dont give up
im having the same traumatic experience with the nhs as we speak.. thank you for sharing your story
Male, diagnosed at 55, along with clinical depression, after a work dispute. My diagnosis didn't really help me much in a practical sense. But I understand myself better as a result. We have to National Disability Insurance Scheme (NDIS) in Australia. It's of little use for people with ASD, especially oldies like me. I'm now 64 and semi retired. Never give up. We're all worthwhile people, even if others can't see it. My son is on the spectrum and my wife is a saint for putting up with us.
I know where you are coming from. I was 60 had my burn out, lost my job, my family. I live as a recluse. I was told I had depression, but always new there was more to it. The more I research it the more I see how this has destroyed my life over the years. I have been jumping through hoops for assessment for 3 years. The nhs is woefully understaffed for this sort of thing. The hardest thing is to look back and realise that though I seemed normal. The me inside always pushed me down the wrong track.
Nicely put and autism explains many things in my life as well. Yet with a diagnosis I’m not sure what that’s supposed to change or help exactly? I still realize the social difficulties and small talk is even more draining and mind numbing now. I’m very reclusive too and prefer solitude as compared to the weird forced social stuff
Thank you for sharing. I’m 43 and was diagnosed in December. Before this I was misdiagnosed with a serious mental health condition, obviously the treatments didn’t help as I didn’t have this illness. The 4 year leading up to my diagnosis were a living hell, I was treated so badly by mental health professionals, and then since realising I’m autistic I experienced disability discrimination from the NHS which would shock most people. I’ve been left with such trauma, but the autism diagnosis has saved my life, there’s so much needs to change, I’m still affected by what I’ve been through and wish I had a way of initiating change in the NHS, one day I will share my story too, but for now I’m focusing on building strength.
A late diagnosed 40 year old male here. When I received my diagnosis I was in the middle of burnout. I was near hysteria at the beginning of my assessment. Thank goodness I was in the hands of a professional who recognized what he was witnessing. I also believe I have ADHD and would have to pay another large sum of money to get that diagnosis. I’m so happy I went through with it. I feel for anyone who is not so fortunate to find a good doctor. Do your research. Not only for ASD but for your practitioner. Bless you.
I relate a lot to what you are saying. I am 43 and, after several friends telling me I might be autistic, I started reading about it and felt -finally!- identified. Since I was a girl I have been diagnosed with general anxiety, hypochondria, social phobia, and specially, OCD. I’ve been in dozens of phycologists and all I heard was “you are too complicated”. I looked for an autism specialist online and, after 4 sessions in which she briefly asked about me, she applied the ADOS-2 and prepared some questions for my mother… she concluded I am not autistic because:
1- I speak very fluently (I have worked as a Spanish teacher for years, thanks!).
2- I could describe the worldless comic and saw facial expressions in the angry monkey stealing coconuts (ADOS-2 test).
3- I named more than 2 friends and activities I enjoy.
I felt devastated because I really thought I had an explanation to my weird personality.
Now, I have found another therapist that is taking the time to know about me. We have been talking for 3 months now and it’s time for ADOS-2 and ADI-r. She says it’s a mere process for my diagnosis because she’s already sure I have it and we are already working on it. Finally, I’ve found a therapy that actually helps me as cognitive behavioral therapy was terrible for me.
(Sorry, I’m a Spaniard and English is not my mother tongue).
I am also a late-diagnosed autistic woman. I'm also going through burnout and I was also misdiagnosed with anxiety disorder. During my first assessment I was told that I am not autistic (similar reasons like you). It seems the male psychiatrist only knew about the male autism stereotypes and he even didn’t notice all my (autistic) issues. About a year later I was tested again. I went to a psychiatrist who is specialized in testing adults and had lots of experience in testing adult women. I have been diagnosed as autistic at the age 49. During this assessment the psychiatrist assumed that I have ADHD too. Now I am waiting for this assessment. Thank you so much for sharing your experience.
I feel your pain. I am a 44 year old male and waiting for a private autism assessment. It's sad that it's taken so long and so many wrong/lazy diagnosis from the NHS which largely is a real disappointment with the NHS. I went through the NHS process also, it was absolutely disgusting, really unprofessional and like you totally unfit for purpose
Thank you so much for sharing your story. I was diagnosed as being on the autism spectrum at age 35, about seven years ago. In the United States, it is horribly difficult for adults to get autism evaluations. A lot of places only test and diagnose kids. I was very fortunate to get an assessment through Vocational Rehabilitation (service that helps disabled people get employment) where my counselor was curious, I think, about my behavioral and emotional quirks, and referred me to a psychologist for a very thorough evaluation. It's made a lot of difference for me to have this diagnosis. I never really thought I was autistic, but it makes so much sense. Autism truly is a spectrum, and I think people still have unfortunate stereotypical ideas about how autistic people behave.
It is looking like I am Autistic and I even had stereotypical ideas of what Autistic was. I mean I knew there were smart people who were called Asperger's (which they did away with that name now and just say the spectrum) but I never ever thought I might be until I was asked by a man who works with Autistic Adults if I was as if I should have been diagnosed by now because I was really showing signs.
Very brave to make this video. I've been recently dxd as Au-DHD and I'm in my late 40s. You are not alone.
I'm so glad the diagnosis came through in the end - after we last spoke in Dublin, I was so angry on your behalf with how you'd been rebuffed the first time round. The process is utterly gruelling even when they get it right. The effort involved in social masking is massive, and the fact you were penalised for your skill in applying it was and is appalling. It's freeing and transformative to have the security of the diagnosis. I still struggle to function as an adult human, but at least it's a start
[Sends you a big virtual hug]
Thank you so much for this video, it obviously was not easy. Aged 57 myself, I am just starting the process with the NHS. Have been told I may have to wait 5 years for a diagnosis. Also, close friends say no way, as I was a creative artist for years and ... can talk to people. I have to explain that last is because I had to learn the hard way to mask up over 50 odd (very odd) years. I ramble, but thank you thank you. All the very best for the future.
5 years really? I was told around 2 years, bn waiting 1.5.. i did find one that cost 500 so will be doing that next year if no test booked by then as im in kind of urgebt situation. Its silly how long to wait
@@soulTraveller144 Hello. Well, I did get a letter last year saying that the (NHS) waiting list for my area (Surrey) was over 2 years - and that was apparently pre-pandemic. They will let me know, as am 'on the list'. So who knows, I might get lucky and hear from them next year. I wish you all the luck and hope you get the diagnosis you need.
@@Flintknife thankyou. I hope you get yours and i relate to the masking and its amazing your still here after that long ♡
@@soulTraveller144 Please could you share the information of the assessment for £500? Thanks so much. It would be a great help. Have you had your NHS assessment now? If so, I hope the experience wasn't awful for you.
@@Trissa.33 i did not get it. i am on waiting list for nearly 2 years and thanks for commenting as you just reminded me i need to check at the doctors if they have sent me any update as I've moved 3 times in last year- i think the 500 test was in Woking UK as i seem to recall
Ive just noticed this video is from 2 years ago. I was diagnosed with ASD and ADHD aprox two years ago at age 38, i am now 40. I was previously diagnosed with anxiety and depression then BPD with Bipolar. I felt like i was discharged from the NHS mental health team still without answers, just drugged up and hardly able to function. I worked out i was Autistic myself through watching a video by Sarah Hendrickx and started the long road to getting a diagnosis. Thank you for sharing xx
Thank you for sharing this. I am 68 years old and very recently discovered that I have autism. Living in Oregon, USA, the cost of a formal diagnosis is prohibitive. But I did get much help and encouragement from all over, in self-diagnosing. I am also an author of sci-fi, fantasy books, currently writing my first screenplay. Learning this about myself has been life altering in a most wonderful way. You are giving me the confidence to share my spectrum stuff on my youtube channel as well. Thank you, thank you for sharing!
I got my diagnosis at 27. Glad I have autism. Neurodiversity is good I think.
The outside world can add the struggle.
Love the star wars ending. Thanks for being brave.
I am 40 years old and I have recently been diagnosed as autistic. I am still trying work through this diagnosis for myself after having believed that I was living with functional depression for most of my life. It is a deep and very personal journey. Thank you for your vulnerability.
Science fiction & fantasy fandom (which heavily overlaps computers and sciences) is rife with the neurodivergent. Welcome to the club, and thank you!
Yes, the SFF world is my tribe for multiple reasons now!
Emma you have found out several strategies to deal with the condition, that is something many people want to know and you must share with the women out there who are suffering because of lacking your personal creativity and sensitivity. You are a valuable individual and you could help many other too!
I'm late to the party, but thank you so much for this video. I was also diagnosed with generalized anxiety disorder in my early 20's. And I feel like the therapy from that caused me a lot of harm in the long run. I am 35 now and after lots of research and study have come to think I could be autistic, and have self-diagnosed myself. I wish I could get an official diagnosis, but it scares me to be misdiagnosed again due to past trauma. It also costs over $4000 for an assessment where I live, so to risk that amount of money to possibly be told, "Sorry, but you are not autistic" is terrifying. I did get an ADHD diagnosis about 7 month ago.
I love writing as well (special interest), and it is my dream to be a published author one day, so your story really resonated with me. Autistic people can by hyper empathetic, which helps them relate to people and I think as a writer would help write very compelling characters with layers and depth. Your experience really helped me a lot, so thank you so much for sharing your story. I want to read your books now!
Just so you know adhd is linked to autism
I am 42, and I recently went through some changes at work. I was super excited about these changes... and then the changes happened and I instantly felt overwhelmed, and I cried at least three days in a row. I recently started to smile a little more, but for about three weeks, I didn't feel like smiling, I didn't feel like I wanted to be happy. Of course, this was unlike me, and I was having a hard time wrapping my mind around what was going on with me. Normally, I can be trained to do something one day and the next, I am helping other people. Why is this so hard for me to grasp? What is wrong with me?
After doing some research, I started thinking about some things in my life that I have been going through, and things started to make a little more sense.
At least two years back, I would be off of work, totally chilling in front of my computer, and I feel completely exhausted. I began thinking of why am I so different when I am not working compared to when I am working? Then I came up with the conclusion that it's like I am wearing a mask. (This was before I even watched any vids about Autism, so it's kind of ironic that I considered it a mask.) I noticed that when I am at work, I become who I am expected to be, but when I'm not working, the last thing I want to be is happy and smiling. The only problem is, when I wear the 'mask' I feel like I am forcing myself to become happy and I end up becoming TOO happy to the point where I feel like I am annoying others. And then I apologize for annoying people.
About two months ago, before the change happened, I would have these moments where I'm my normal non-working self, and I have this single thought that I feel that my soul is crying. It's very difficult to deal with, so I go downstairs and socialize a little bit with my sister and the feeling goes away temporarily. Normally, I would rather be by myself, so deciding to be social is big for me.
I've never been big on counseling, but I feel that it is important for me to figure out how to overcome why I am feeling the way I am feeling and to help learn more about myself.
One last small story before I force myself to stop... I wanted to nonchalantly tell my sister that I think I may have autism. I don't want to straight out say it because I didn't know what she would think. So, I copied the links of a couple of videos that spoke to me and I sent them to her. I didn't hear anything back. So, when I went downstairs to visit, I subtly asked if she looked at the videos I sent. She said she did, but I wasn't expecting what she said next. She said... 'I think I could be autistic'.
It wasn't exactly the reaction I was hoping for, but we both know that neither of us are alone in the way we think and the things that we do.
So, when you share videos of your experience... it helps more people than you know. I thank you for your courage in sharing your story.
Thank you so much for sharing this. I'm nearly 40 and realised about a year ago that I am most likely autistic. I'm on a waiting list for an assessment (NHS), but I think that will take another few years. So much of what you describe matches my experience, especially the burnout being disguised as something else. It's reassuring to hear your story, but also very sad to know that you and others have had to endure this pain.
Hi! 👋 I'm about to turn 47. Have suffered from major depression for the past 6 years, though only finally treated for the past 2. My 15 year old daughter is in the process of getting assessed, and that's how 2 months ago I realized I am most likely autistic. I'm in Canada, and like the UK NHS, our healthcare system is very uninformed when it comes to autism in older women. At first my psychiatrist out right rejected the idea, because I understand sarcasm, don't have obvious stims, and understand expressions like "don't throw stones at glass houses". He literally did a 5 minute assessment, lol. I then explained all the reason why I think I am, and he agreed that I might be, but I likely wouldn't meet diagnostic criteria, and even if I am, it wouldn't change anything. By my next appointment, a month later, I had consumed at least 100 hours (if not more) of TH-cam content on autism, ranging from #actuallyautistic creators, to medical seminars for healthcare professionals presented by autism researchers. I realized many things about myself, including my difficulty with advocating for myself, and this time I was prepared with an extensive written list of grievances about my treatment. I told him it should have been a huge red flag that I had systematically tracked my moods with my cycles, and tracked how weather affected my mental health. I told him how I felt he was treating me like yet another middle aged woman going through a midlife crisis, and that just throwing medication at my depression without addressing the underlying causes is a terrible way to treat mental illness. I don't know whether it was my systematic assault on his ego, or further analysis of my specific traits, but he decided to add "suspected autism" to my medical chart so that it is there for any medical professional I end up needing to work with in the future. He told me that I was very high functioning, which I laughed at and said 'if I was so high functioning, I wouldn't be needing his care' I finally realized that the last 6 years were caused by autistic burnout, and now I understand which parts of my life caused it and how I can make adjustments to recover and prevent it in the future. I know some people feel upset when they learn they might be autistic, but for me it was a true gift! I finally wasn't broken. My life made sense! All the pieces fell into place and I no longer felt hopeless. I will likely still seek a formal diagnosis, because despite believing with every fibre of my body that I am autistic, I feel I need that piece of paper as armor in case anyone ever questions it again. It's lovely to meet you and I hope to see more videos from you :-)
I applaud your perseverance in the face of such ignorance (and, I suspect, a big dollop of latent misogyny). It is so very stressful. Wishing you and your daughter all the best. I am planning to do more videos very soon. :)
I'm male and after feeling different all my life and being diagnosed with many mental health problems over the year due to my social problems, depression, borderline personality disorder, bipolar, pychosis, social anxiety the list goes on.
When I finally got a diagnosis at the age of 39 (ASD/Asperger's) I found it hard to believe, but after learning about it, it makes so much sense as to why I've struggled all my life, it now feels like a weight has been lifted off my shoulders. I try to not be so hard on myself now.
I just wish it was discovered earlier.
Best of luck to you, stay safe.
Thank you for sharing your story. My chronic anxiety and depression may be misdiagnosed. Learning about others gives us courage to get more help and remember we are not alone. Hugs!
Rosemarie, How are you? How old are you? I am 73, American. Lifelong anxiety and depression, in between good times.
Yes thank you for sharing... validated my fears about getting a diagnosis
Thanks for this video. I've been searching for someone who I could relate to. I was just misdiagnosed as an adult with Social Communication Disorder last week. I am devistated and feel like I will never be understood or truly listened to. I had been trying to come to terms with a self diagnosis of ASD over the past year. I finally decided to spend the time and money on an actual diagnosis. I scored high on all the self-evaluations, and I relate to so many other high-masking adults. It wasn't easy, but I found a psychologist who said she tested adults for autism in my state and took my insurance. My appointment was similar to yours. 1.5 hour interview over zoom. I felt like she dismissed 1/2 of what I told her. She tried to tell me I probably don't even have ADHD (which I very much do and was diagnosed at 11 years old), and I was probably just suffering from socail comunication disorder and social anxiety. She admitted that I am a complicated case because I scored as mildly autistic in every way, but I didn't present her with enough evidence of repetitive behavior patterns, so she can't diagnose me as autistic. Did she not listen to anything I said about stimming?
The advise she gave me was to find a support group for social anxiety to learn how to better interact in socail situations. She said that I could try looking in autistic groups for help with that. What!? She wants a person with social anxiety to find a group of people to teach me to mask better than I already do? Though, I clearly masked well enough to fool her. I spent hundreds of dollars for her evaluation, just to feel even more alone, hopeless, misunderstood, and dismissed. I can get that for free from everyone around me. And now there is a "professional" to back other people up with the idea that I just have social anxiety. 😔 ahhhh! but it is so much more than just social things I struggle with. 😩
Anyways, thanks again for your video. It gives me a little hope to hold on to.
I'm a male in my 50s with a similar profile to yours. Academically gifted and creative, I became an architect and a teacher. In my late 20s I started having panic attacks at work, and was misdiagnosed as you were with an anxiety disorder, and later with depression and a host of other things. Like you it was a freind who suggested I might be autistic (with love) and that set me on a course for formal diagnostic asessment. The assessment process was as you describe, long and comprehensive. It was done by an expert.
Wow....everything snapped into crystal clear focus. My career difficulties. My breakdowns (shutdowns) my anxiety. My social difficulties. Like you there was CPTSD which exacerbated my difficulties, but which was not their direct cause per se. Like you, I faced doubts about my autism because of stereotypes about the condition, and about how someone so smart and accomplished couldn't possibly be autistic.
It's been over a year since you posted this. I hope you've found acceptance, accomodation and peace regarding your autistic nature. I'm still working through mine - it's been 6 months since I knew definatively.
One final note: In 2010 I went through a massive shutdown followed by a bout with severe depression and anxiety that lasted 8 years. Nothing pulled me out of it, including psychiric treatment, exercise, meditation, psychotheraphy, etc. What finally snapped me out of that hellish period was ketamine infusion therapy in 2018. Four years on, and I'm still well after a single treatment. I no longer need antidepressants and I terminated psychotheraphy (not helpful for autistic people generally) . If you ever become depressed or shutdown and are not getting better after a few weeks, you might want to try the treatment. It's safe, and extremely effective, and it's got 25 years of solid evidence backing it up:
th-cam.com/video/nW21-AYY_fs/w-d-xo.html
All I know is that actually healed something in me. One treatment. Most people need ongoing treatments, but I suspect it might help autistic people more than neurotypical people.
Oh Emma, so many bells were rung for me listening to this. I'm 57 with ADD and Irlens syndrome (diagnosed as a mature BA fine art student 3 years ago) and now awaiting ASD assessment via the NHS. But the trauma of a lifetime of living in a neuro typical world takes it toll and I can totally identify.
I have irlens too, ASD & aphantasia and have major trama of being told I was instead gifted just bad at life. I was locked up as manic, when I had a break down due to fast talking an an inability to regulate my emotions in a expected way
Well I've just revisited this video and realised I had commented on it. I had my NHS assessment in August 2021 and was deemed not to have autism because they didn't consider my stims to be stims, they didn't notice any idiosyncratic speech and I didn't have anyone to speak on my behalf about childhood, though I have a good memory of childhood experiences. They said it was trauma too (how they don't understand that both things can be true puzzles me). So I'm currently in the process of requesting funding for a second opinion via a centre that specialises in female presentation. Thank you Emma. I'm so glad this video resurfaced onto my feed today. I experienced autistic burnout in May 2021 and it's the most debilitating life sucking experience. I think it was due to a lifetime of trying to fit into a world not built for us. My batteries fell out and I no longer had the ability to deal with that world in the way I had tried to for so long. I'm still struggling with the burnout.
♡
I've found your video a couple years lat. I'm 47 and am in the process of getting an assessment. My therapist feels I most like could have aspergers, and has been very helpful in finding someone for me to see to get assessed. I also struggle with major depression, ADHD-inattentive type, gen.anxiety, cptsd and terrible social anxiety. And though I'm on medications for the other issues, I told my mental health professionals that I still feel 'off', like I feel like I'm about to just crawl out of my skin and I feel like I'm about to go crazy. I had recently met a lady that has Autism, and she said she noticed some traits, so we sat down and had a long chat. And whilst talking, there was A LOT of, ya me too moments, I felt that someone finally gets it, gets ME. She was the one that brought up getting assessed. I've been watching some videos of late diagnosed women, and it's been enlightening because I don't feel so alone and lost. It wasn't until this year, when I ended up in hospital 3 times, once for a medical reason but the other two, they thought I was in a bad depression, and though I was a bit down, I didn't feel like it was a depressive episode, I was just worn out, tired, and bogged down, my mind and body had, had enough. After doing research and hearing others' experiences, i found out that it might have been burnout. Anyhow I'm just glad that I no longer have to 'suffer in silence' anymore because people are finally starting to listen to me. A couple decades late but at least, I have hope and can figure out ways to begin to enjoy life again and feeling more motivated.
I got my ADHD and ASD diagnosis in my late 60s after a major autistic breakdown. No one in my family wants to hear about it, and in fact i have been shunned by my children. I am working so hard in therapy- my current special interest, one might say, largely because late-diagnosed women like you have given me strength, and without whom I would be utterly lost.
As a young black woman, I was finally diagnosed as having ADHD and ASD (comorbid with depression and anxiety). ADHD I always knew. But Austism...I felt skeptical because I knew how the symptoms of ADHD and ASD cross hairs. I kept taking online quizzes, all of which told me I showed strongs indicators of Autism and Asperger syndrome; and I kept watching videos of other women talking about their experiences leading up to a later in life diagnosis, all of who I could 100% identify with. I cried. And not just because I was sad, but also because I finally felt relieved. Finally so much of my life and everything I've been struggling with is making sense. And I can now have a conversation with both of my parents where we can all retrospectively see my symptoms were never that subtle, we just didn't have enough information about the conditions. Pride, stigma, and ignorance kept me from getting a early diagnosis.
Same with me! I am 49 and just going to get diagnosed now! It was a guy who has kidney disease like me and when we were talking online even though he is in my city he suddenly asked me if I was autistic. Turns out I was typing and talking just like an autistic person does. I have no idea how to be any other way but it got me thinking as I always knew I was different and my family had a hard time with me because they felt I would focus on a topic and not take social cues when they were bored of what I was saying and didn't want to hear it until they would get frustrated with me and down right rude. I always thought maybe I am just stupid or something. I could not figure out why I had such a hard time fitting in. Also had a hard time making friends. Not that I really felt a need for them but that when I would be paired in sports or in classes it was very hard for me. So then I took a couple online Autism Spectrum tests and both I scored at a very high chance of being on the spectrum suggesting that I should get tested. So I started watching videos on other adult women on the spectrum and I see so much of myself in so many of the women that I think for sure I am! Good thing I am depressed and have to take Paxil and have to make sure to have my depression under control due to being on Prednisone for my kidney transplant, because I should be able to get an evaluation which is only done with a Psychiatrist here just like what I already had for my depression diagnosis (Psychologists oddly are not covered in my province in Canada). Once I am diagnosed then I can feel it is finally confirmed but already I feel like I finally fit in and am not stupid after all.
I had a diagnosis of mixed anxiety and depression disorder, due to losing many friends over my social stupidity. I had an autistic test but came out negative but I still think I have high functioning autism. I feel so lonely and don’t understand why it’s always me who have to instigate contact first. I’m at a loss. I think you are very brave and heroic. Great video
Thank you for making this ❤️ This was real heckin’ brave of you and I admire you so much for it.
You're amazing. Thank you so much for sharing such a personal story, leading by example and NORMALISING neurodivergent people in society and the roles they/we play. Proving it's different to the stereotypes of pop culture ❤❤❤
I had the opposite. I got referred, long waiting time, mental health issues abound, decided to go private, cost nearly £1800. Got told after less than 20 mins, I am not autistic. Got the NHS appointment come through, very thorough interview and background info gathered, amazing team at Cheshire autism services, and got my diagnosis. Am female, 47 and got diagnosed in April this year. Am now reflecting on my life and am going to put in a formal complaint against the original private practice, just so no one else gets fleeced. Worst thing is, I sent a letter of questions and a complaint at the time and got brushed off. Sending you love and best wishes, thank you for this amazing video xx
I had a similar experience when I attempted to get assessed through the healthcare system here in Canada. I had an initial appointment with a psychiatrist who my family doctor referred me to for assessment of being on the autism spectrum, but when I mentioned a previous diagnosis of major depressive disorder he first attempted to treat me for that; which, I do have chronic depression, but it's been managed for over ten years now and I wasn't having any issues with it. As long as I take my medication and take care of myself, it's under control aside from some slight fluctuations in mood that dip a bit low at times (but nothing like when I was diagnosed and started treatment, and would only be concerning if they lasted for more than a few days, which they don't, or happened more frequently rather than once or twice a year). When I described my difficulty talking with people and holding conversations, he then wanted to put me on medication for anxiety; which, I've been on in the past, and haven't needed for nearly a decade and a half, and my therapist who I had bi weekly sessions with had remarked on how well I was doing and we'd just started the process of ending our sessions because I was doing so well. It was incredibly frustrating, but I told myself to just stick with it even though I felt like he wasn't taking in a single thing I said.
The next session, he asked me a number of questions. Most of my issues were minimalized and trivialized, my sensory issues were completely ignored (despite my severe and often debilitating sensory issues with sound), no one likes plans changing, etc. The fact that I'd dated anyone was a strike against me, the fact that I had friends at all (despite the supreme difficulty I have in keeping up friendships, starting friendships, and the years I spent having no friends at all) was another strike against me, the fact that I was capable of holding a fairly normal conversation was a strike against me (never mind I've spent my entire life studying and dissecting conversation so I don't stick out like a sore thumb... and still fail at times); it was utterly humiliating, and I've never felt less heard or listened to in my life. Every time I'd try to explain the difficulties I've had and how I'd worked to mitigate them, the fact that I could mitigate them even in the slightest ways meant they weren't that big of a challenge apparently. There was supposed to be a third session, but I just had enough.
To make matters hilariously worse, he ended sending a letter to my doctor saying that he suspected I had Asperger's, which isn't a diagnosis here anymore. He wasn't even up to date on that front, let alone the differences in the ways women tend to present, or diagnosing adults rather than children. It was just an incredibly painful experience. I can't afford to get a private assessment, so I'm stuck on a waiting list that will likely take more than a year to get an assessment with a different psychiatrist (who may or may not have the first clue about diagnosing autism, let alone diagnosing adult women) and crossing my fingers that it goes better.
Thank you for your bravery in making this video, and I appreciated hearing your diagnosis journey. Only a few days ago, I had the "lightning bolt" moment where I realised I may have Autism (after being diagnosed with GAD around a decade ago) and still trying to process it all, but it fits with so much of what I have experienced in my life. I am 41yo.
Thank you so much for sharing this! I can so relate. I have been in therapy since I was 15 and was misdiagnosed and prescribed a plethora of medications that never helped and only found out at 50 that I am autistic (38/50 on the AQ50) and CPTSD and it's actually a relief because I've been so often rejected for being "crazy" and I just assumed all my weird little idiosyncrasies were unique to me, but now I'm finding thanks to TH-cam videos like yours that there are lots of us out there and it's like finding your long lost tribe
This video is fantastic thank you for doing it, opening yourself up and help all of your autistic women I was diagnosed with ASD and adhd at 42 and went through the same thing with having a diagnosis of depression and anxiety before I got my diagnosis
ADHD makes you creative. I'm both and talkative, creative, open to new people and experiences. There were SO many people who didn't believe me when I diagnosed myself as autistic. That's why I needed the official paperwork. Which I got easily, because I'm a "stereotype".
I am 56 and I am waiting for my assessment appointment (privately and expensive). My daughter was diagnosed and even then, it never occurred to me that it was possible that I could be as well. I am currently in an eddy of feelings and emotions surrounding this topic and what the outcome could mean for me. I really enjoyed your video, thank you for sharing.
Same story here. After 1,5 years in the government healthcare system in Norway I have simply given up getting a diagnosis. But I have diagnosed myself and I live a happy life now. The whole experience made me really hate this country and system so much that I am moving to a different country in four weeks. My own family couldn’t even take my side when I told them how bad the doctors and therapists treated me, all they said was «you just gotta hold on, that’s just how the system is». If I had taken their advise I would not be alive today. I stood up for myself and realised my self worth.
The «test» included playing with toys, pretending to brush my teeth, and the therapist calling my parents and school teacher. I am 36 years old. It was humiliating to say the least. The «autism specialist team» had no experience with adult females and they had a blank stare when I referenced new research done on the subject. Cherry on top was their constant changing of plans, even cancelling the test once two hours before. The day of the test they gave me a printed schedule. They followed it for 15 minutes before going completely in another direction and the whole day was just chaotic.
After «failing» the autism test there is no more follow up from any doctors or therapists, since the system doesn’t have anything more for them to send me to.
«Free» healthcare is a death trap for those who struggle and I really hope people could open their eyes and se that socialism NEVER works.
Finland is just the same. And after 23years fight i got my diagnosis. And now that i got it im also gonna move away ☺️ I can relate lot to your text
Thank you! This video spoke to me more than any of the others I have watched. I'm 75 years old. I had a "successful" career in education -- but I never achieved my own dreams, because I have a big limitation in my social skills. Job interviews, in particular, are hell. I wonder what people think of me. I smile and seem happy, but I have very few close friends and right now, no one outside my family that I'm close to. I'm in the process of scheduling my diagnostic process. Thank you so much! I also always wonder if people read the comments on their past videos, so please let me know if you do!
You R beautiful and brave... I am an autistic woman diagnosed at 46, mother to an autistic young man if 19... Thank you for sharing... It all sounds Siiiiii familiar that I can only say... "YAY, YOU NAILED IT GIRL" 😉 ♾️💞👌😊👏👏👏👏👏👏👏👏
when i got diagnosed... i was totally /wrecked/ for about a week. but now that it's settled in, it's pretty much cured my lifelong major depression! just knowing myself, knowing who i am, knowing what i need, and knowing when to push and when to retreat. i always heard psychologists and therapists talk about "practicing self love." i never understood what it meant. in fact, i always thought it was psychobabble that made sense to no one. but when i started to learn who i am, something flipped inside of me and i understood self forgiveness. and then i understood self love. and now i'm the same person i always was, i just understand it better. and i feel so grateful to finally know what they all mean by "practice self love." 🤣
Hi. Yup. It sounds familiar. I was diagnosed last November at 60y old. Its been difficult to come to terms with. I have often heard people feeling a sense of relief after diagnosis. I had hoped diagnosis would be like getting a reset, but it hasn't been like that for me. I'm still working through this experience. Like you post burnout too. I am glad I know though. Just got to keep going....
Wow I can so relate to your experience Emma, you are an amazing lady, thank you so much. I needed to hear this. Being creative myself, and 45, I can't help wondering if perhaps females present more creatively, and that there could be many more of us who have also been misdiagnosed. Most importantly, I hope it's helped you find ways to live easier.
Thank you awesome lady
Thank you for sharing this. I discovered you on Twitter after you shared the lovely story about your dad and his duck! I am 38 and just got my autism diagnosis yesterday! My 11 year old son was diagnosed last year and after all the research I did into autism for his assessment so many lightbulbs were going off for myself as well. Again, thank you for taking the time to share-so very relatable.
Interesting
Thank you so much for making this video. There were so many moments listening to you describe aspects of your experience when I was going, 'Yes! Exactly'! I don't know if that means I'm autistic, though I am 44 and often feel that the diagnoses that have been assigned to me fail to adequately or correctly reflect a nuanced, complex, and complete picture of what I've experienced since age two. I sincerely wish you all the best, and again, thank you. Your courage is inspiring. 💙
I am glad that you finally received the correct diagnosis for autism. You are right about autistic people not fitting into societies conventions. It's because like the metaphor of a computer software program our brains software program is wired to give instructions differently than a neurotypical brain. So we learn to reprogram ourselves or mask ourselves. However deep down we never change who we really are. Well done on learning how to write stories for the masses. Society is structured as a system based on how most people think. Even as a male I feel like i am on the wrong planet or i was born in the wrong century.
Hearing how often women are misdiagnosed or missed altogether is just terrifying to me.
Your comment about how *you* needed a diagnosis to be able to self advocate really hit home. My counsellor put it to me in my last session that I can ask for accomodations without needing a diagnosis to justify it. But I still feel like I need someone else to tell me it.
Thank you for sharing your story.
Thank you for sharing your story. I am only just starting to think about this for myself. I am 40 and a woman and I also have CPTSD. Over the past few years I've started to struggle at work, experiencing long periods of burnout. While I haven't had a full break down, last summer I had an intense reaction to a critical performance review (critical, but still a good review) that left me spiraling into thoughts about whether or not I am just different and need some sort of accommodations. I'm now trying to disentangle whether or not my symptoms/experiences are just more things related to CPTSD or if I'm on the spectrum also. It did seem like a ridiculous idea to entertain at first, but the more stories I hear from other later diagnosed women, the more I wonder about myself. Thank you again.
Thank you for your bravery in putting your story on here- I’m 38, and connect with a lot of what you talked about, and I might even use your video to help my parents understand why I think I’m on the spectrum.
I know the feeling. My mom might finally accept me but I know at least one of my brothers do not believe it even exists and will say it is because of the vaccine which I did not even take as I held off due to family. It bothers me when people do not believe as we need all the support we can get as we struggle to understand ourselves. First before telling my family I am focusing on my diagnosis and understanding myself more first. That way I am better at picking up on the social cues and better at how to express that I am to them. Hope my commenting helps you.
@@kabo0m thank you for your reply ❤️ It really is hard with all of the misinformation/stereotypes etc. I’ve only told my husband and one sister so far, and I’m waiting until my daughter has a screening for autism, dyslexia, etc (I’m guessing she’s on the spectrum, too). If she is diagnosed as autistic, it might be easier for me to “come out” as self-diagnosed and be believed.
Best of luck to you!! ❤️
I was diagnosed with ASD, ADHD, anxiety and depression last year at 41. Also during a burnout caused by my parents deaths.
Congrats on the Hugo award!
Also, I admire how you’re able to identify and articulate your experience.
I've been watching Apergers from the inside and Mom on the Spectrum and have found them brilliant. I REALLY appreciated you sharing your diagnosis journey. THANK YOU SO MUCH.
That was really enlightening and obviously hard for you, thank you for sharing.
Thank you. Diagnosis 3 days ago at age 42 and our symptoms are very similar indeed. 🙏❤️
Mrs Mallard brought me here and I'm glad to have found your self revealing presentation. As a 63 year old man I found your talk useful as a way to explain traits I've not adequately reconciled in the past. Thank you.
This is super helpful! Thank you so much for sharing!
I’m 39 & in the last year I’ve become aware that I am most likely autistic. I test high on all of the online test I have taken.
I don’t have insurance and in the US it’s Pretty much unattainable to get a autism diagnosis without insurance or or paying a ton of money. I don’t need a formal diagnosis for work or anything but it would just satisfy the curiosity & make me feel more validated to know that I am in fact autistic.
Thank you Emma - I felt so much empathy for your situation. I am in my eightieth year and self diagnosed when I was 78. I have largely given up on the NHS but have found that some of the medication prescribed for depression, anxiety and stress to have helped me cope.
Thank you for sharing this video. I am fortunate to live in an area (Leeds) with an excellent NHS specialist adult autistic diagnosis service. I was able to self refer, without going through a GP, which for me was a godsend, as I needed to build up a trust relationship before dealing with this issue, and my long term GP retired. I was diagnosed at the age of 54. I am a man, but present atypically due to high intelligence and having learned coping strategies. School was hell, my performance depended hugely on my relationship with the particular teacher. I had to work MUCH harder than my peers to achieve.
I turned up at the first assessment interview with a large amount of written evidence and analysis, which I am certain helped with the diagnosis. They also contacted my parents and my brother. I have since been through the process with another family member, who also presents atypically.
Diagnosis has helped me, and my family hugely with understanding and dealing better with day to day life.
I'm 46 and I've just had my pre assessment assessment via the nhs. The woman I had told me she thinks there is loads of evidence but she doesn't make the decision. I'll find out in 2 weeks if I can go on the 2 year waiting list to be properly assessed.
I have generalised anxiety disorder.
I have PTSD.
I have CPTSD.
I have major trauma, mainly sexual abuse and assault.
My therapist strongly advised me to pursue assessment
She said when all is said and done and she has gone through my whole life with me for about 5 years, she said the reason I struggle and people have assaulted me is because I am too trusting, I can't see when people are trying to take advantage of me.
I am struggling to process this. My whole life now has an autism filter cast over it but looking at my trauma is horrible and triggering.
I feel like I'm struggling against a strong current. Thank you for this video.
Thank you for your bravery in making this video. So many things resonated with me. I've struggled my entire life and just now (50+) am finding myself being inexplicably drawn to gentle resources such as this. I don't feel quite as alone.
Thank you so much for sharing. I'm 31 and just now realizing why I've struggled for so long. Now working towards getting diagnosed but it's daunting.
Hi. 45 almost 46 yrs old woman here just recently diagnosed about a week ago. I cried then sorta shut off, kinda feel anger? Frustration i think not sure, nor why but anyway yt is now showing me videos like yours cant say why cuz i dont know why though im grateful i guess cuz i feel somewhat comforted by the videos cuz in this world i feel alone when it comes to people. I know some care but just don't know how to show it which i understand cuz im that way myself often. Anyway im running on again i apologize.im grateful to have seen you. IN your video here.ill see more.💕
I am in the middle of losing my grip at 55 and it is shocking to me how much I move through this world clearly autistic, and never saw it. I am anxious about the test and getting to it, but I am very grateful to have found this world of people who are like me. I am grateful that you decided to be open and put yourself out there. It gives me hope to know there is the recovery side of this because I cannot continue like this.
I felt "hello Im alive", it made me laugh and then almost cry, same boat - totally. I could hug you, if you were ok with hugs. You are shining a light on a dark overgrown path for women like us and I appreciate you SO much. Thank you ❤🙏
Got a 39 out of 50 on the AQ. I've been diagnosed with social-anxiety / generalized anxiety / major depression disorder in my 20s. I'm 41 now. I already know I've developed coping strats / masking skills as I've gotten older. I don't know if I can / should pay people to give me a label because I don't know if would really change anything or help me in the end. The whole situation makes me feel sad and a bit hopeless. Healthcare in USA is really bad. Least I'm not the only one. Wishing all of you love and endurance.
Thank you so much for this Emma. I am 57, almost 58 now and, after completing the AQ50 with the Mental Health Practitioner, I've been referred for an assessment - apparently this can take years. Really appreciate your straight forward and honest approach. Thank you.
Thank you for this! I was diagnosed in my 50s after a complete life failure. I can't even imagine how different my life would have been if I'd known what I was dealing with 😵💫
The subject never came up until my son was diagnosed with it.
Wow. Your phrase, Complete Life Failure, describes me from age four to age sixty two !!! Happier now I know all those years I was unrecognized.
I’m glad you finally got your diagnosis. I’m a 45 year old man and have suspected I may have ASD since January 2020. I have an awful lot of the behaviours and believe I fit the criteria of the DSM5 that my local diagnosis centre uses, but, I just don’t think I’ll be taken seriously. Firstly I’ve held a job for almost 30 years, but 85% of my working time I am by myself, just how I like things. Difficulty maintaining employment is one of the signs that NICE tell the GP’s to look for. Secondly, I have forced myself through a lot of discomfort and effort over the years to be able to make eye contact with people. I’ve heard other people say they’ve been assessed and told they can’t possibly have autism because they can make eye contact. It’s so frustrating. Like you did, I’m making a list of all the “behaviours” I have that are associated with autism for if I do speak to my GP, thanks for that tip.
As a follow up to my previous message I finally plucked up the courage to speak to my GP. She was great, listened to my reasons why I think I have ASD and said she definitely agrees I should have an assessment. However, my local autism clinic have rejected my referral due “insufficient evidence to warrant an assessment” because on the referral form that they ask my GP to fill out, 3 of the questions are:
1 - Can the person initiate and sustain a two way conversation?
2 - Can the person make eye contact?
3 - Has the person had difficulty maintaining employment?
My job (that I’ve been doing for 30 years) forces me to have to deal with people on a daily basis. Of course my social skills have improved over the past 30 years!! 😤😤😤😤😤
I shall speak with my GP and request a referral to a different clinic under the NHS’ Right to Choose policy.
Thank you for sharing your experience with us. I don’t think I could have ever presented so succinctly my emotions of my diagnosis (three weeks ago, aged 48). I have been transfixed for the full half hour.
I do honestly believe that there is a very mixed bag when it comes to an NHS diagnosis, possibly depending on where you live but I can’t speak for the rest of the UK. I just filled in the AQ-50 plus around twenty pages of supporting paperwork of my life experiences, within six months got my appointment date and after eight months was formally diagnosed.
What I’ve found is that, instead of looking at it as a life sentence, it feels the opposite. You’ve served your time. It’s more like freedom. It has separated me from the neurotypical family members but these were the very people who were the toxic influences in my life. Now I enjoy my own company so much more.
Emma, you’re extremely lucky to have such good friends to have alerted you and supported you through this. Many neurodivergent people aren’t so fortunate.
I wish you all the very best.
Hi Emma, thanks for sharing your story. I was diagnosed 2 years ago at the age of 46 and am still processing everything. I' have got Generalised Anxiety Disorder, Complex PTSD and ADHD all formally diagnosed and am also highly creative and academic. I spent a long while creating maps of my mind, peeking into every habit, thought and feeling to discover my true self and discard the bits that had seeped into my subconscious or been hammered into me by society. I'm feeling much more grounded and self aware now which is great. I'm still exhausted but not so much so that I can't see the light at the end of the tunnel. Best of luck with your ongoing journey.
Thank you so much Emma for sharing your story with us and educating me on your experience. I think that sharing stories like this help us all a little more to understand.
Thanks for opening up about this so gracefully and truthfully.
Can't believe that I only see this video now! Immediately ordered one of your books as I've become infatuated with science fiction. I was diagnosed about 2 months ago. I am 37. I have two masters degrees (fine arts and computational arts) from Goldsmiths in London that I somehow manage to complete within two years. I have won several art competitions and exhibited all over the world. Despite my successes I ended up in complete shutdown for two years, unable to work. Getting diagnosed has been cathartic. It is both liberating and overwhelming as each day brings clarity and more questions. I however got diagnosed in the Netherlands. The experience was wonderful every step of the way. Except for the terrible questionnaires. I hope the diagnosis has brought you much relief since!
I remember an art teacher in grade school telling my mom how talented I was and that she should put me into art school but my mom saying she refuses to reward me with drawing because I was so bad in school (I had trouble in school both with focusing and socially).
Thank you for sharing your experience. It is really helpful.
Your candid explanation is very helpful up me indeed. Thank you for doing this emotional work for everybody's benefit. I'm one of the people who has just benefited, and I'm grateful.
Thank you. This was very helpful. You did an amazing job and I learned so much. Seriously- thank you!!!
Thank you so much for sharing your experience. So brave.
Thank you for this video. I love your raw vulnerability and openness. 🥰
You remind me of me. I'm 25 and have recently realised that I'm autistic and I've got an assessment in 2 weeks. Thank you for uploading this - it means more to me than you probably realise.
Thank you, beautiful, young woman for sharing this. Love from grandma 63, just self diagnosed and happy to being able to understand myself - at last.
Ditto from a 70 yo great grandma who found out I was autistic at 69.
Thank you for making this video. It is very helpful; even outside of the UK. Thank you for being so honest. It must not have been easy, but I am very grateful.
I'm so pleased to have across your video. Your video resonates deeply. I'm 46 I was diagnosed with generalised anxiety then later bipolar disorder. The latter doesn't make any sense to me...I always get up...I'm always busy...
Dear Emma, I really admire you for sharing all of these. It really helps. Thank you
Dear Emma, I would just like to express my gratitude for sharing this very personal video. I am so thankful to have learned about you and your amazing work at Rikon SciFi convention in Rijeka when you stopped by my booth. I never stopped following your writing and TH-cam. It changed my life. Because now at 35 I know I'm autistic.
All my burnouts make sense. My whole life is starting to make sense. And I don't think I would have known without knowing about you and seeing this video 2 years ago...as I've never really considered that possibility before. It took a while for things to sink in. But now I know I'm not alien amongst human species. 😅
Thank you from the bottom of my heart 💜👾💜
Oh my goodness! So lovely to hear from you (and I still use the notebook and the dragon necklace is still a prized possession! I am so glad that the video helped and wish you all the best for managing the burnouts (so hard - I still struggle with that myself!) x
@@EmmaNewmanAuthor Hope they serve you well! It's nice to know they have a life of their own somewhere in this world. I've just settled in a quiet little house in Germany, preparing to enjoy Tea and sanctuary 🍵 Thank you so much for good wishes. Wishing you all the best as well from the bottom of my heart!
Hi, that was awesome. I'm 46 and wad also diagnosed with severe anxiety & depression which I now believe to be autism or Asperger's, I am in the process of getting a diagnosis. My own family tell me to ignore it because of the stigma. Everyday is difficult. I have had substance abuse issues in the past, now dealt with but I still have severe issues without any support. I'm still with the same GP who misdiagnosed me. I'm in the UK also, Scotland, the NHS let me down hugely also. The more I look into it the more positive I am. It was a mental health professional who told me to get assessed. This has helped massively, it's not often I look at someone and think wow, this lady gets it and within minutes. very good, thank you for sharing your story. I do not have a spare £800, really worried I will be palmed off again. Can I ask where you got assessed?
I’m so terrified that something like your first assessment experience will happen to me. Mine is in two weeks and I KNOW I’m autistic but I’m getting my assessment free and I can’t afford to have a second opinion if the first doc doesn’t think I’m autistic. Ugh
Hi! I just wanted too say thank you so much for making this video. It is so informative and it must have been so hard to record, being such a personal topic - you remind me and many others too that we are not alone.
This makes me realise how important it is for me to get help in the now. Your openness is refreshing and brave
Thank you for making this video, you explained so many relatable feelings & experiences beautifully 👍💓😊
Hi Emma, I just found you today after watching your dad's incredible duck video lol, couldn't wait to show it to my wife, it was absolutely wonderful. Best wishes from Steve in Wales.