Autistic Diagnosis in my 40's - my experience of the assessment process
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- Опубліковано 27 вер 2024
- 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.louisehill... - 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.
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.
I hope you will find peace and happiness in life. Sending you a lot of hugs! Warmest wishes!
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.
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
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
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.
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.
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.
@Sophie Astrid Rooth 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.
@Sophie Astrid Rooth 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.
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.
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.
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?
@@dianeqinlv 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.
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.
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!
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!
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 UA-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. :)
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 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:
ua-cam.com/video/nW21-AYY_fs/v-deo.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.
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.
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.
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.
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.
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
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.
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.
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 ❤❤❤
Thank you for making this ❤️ This was real heckin’ brave of you and I admire you so much for it.
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.
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.
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. 💙
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
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'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.
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).
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 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.
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.
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 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 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 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.
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".
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?
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.
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 UA-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!
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.
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...
Thank you so much for sharing about your diagnosis. It helped me finally put a name to and understand pretty much all of the challenges I've had my entire life. At 50 I'm wishing I would've been diagnosed sooner, but I'm still grateful to understand what's going on and why.
I am so glad!
Julie, I'm 52 and just got diagnosed today. It's never too late to get help, is it? I've been fobbed off with antidepressants and personality disorders for decades until my husband began work with autistic adults five yrs ago and was like "Actually Hon, you're a lot like these guys and maybe look into it?" Glad to be getting help soon. Best wishes. 👍
@@donnablack6280 That's wonderful! I still feel like learning I'm autistic is the best thing to happen for me in the past 12 months, maybe even the last ten years. It's made everything easier. I think that's because I no longer blame myself, all the stuff that folks have issues with about it isn't because I have a faulty personality, it isn't because I'm lacking in some way, it's just because I'm wired differently. For some reason knowing that just makes it all easier and lighter. Best wishes!!
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 was 37 when I was officially Dx'd with ADHD-I, though I knew since I was 20. The ADHD force runs strong in my family on both sides. My good friend has ADHD and Asperger's Syndrome. We understand each other and can laugh together at our various missteps. Time awareness is my biggest deficit.
What gets me is how some practitioners, like the first nurse you saw, don't seem to think that multiple diagnoses within one person are not possible. At seems to be more common than not. Thanks you so much for sharing your story and your experience. It is so much easier once you get a diagnosis, to be able to say "this is why I do this, now to find a coping strategy that works for me." I have alarms, timers and reminders for everything, because time as not a straight linear evenly segmented thing. I rely on my spouse to pay all of the bills. I have been upfront with every supervisor I've had about my ADHD, and the good, bad and ugly parts of it. I am extremely fortunate to work for a corporation that accepts neurodiversity in their employees.
How are you now?
ASD late diagnosed is rarely if ever seen without CPTSD. I’m so sorry you had to endure such outdated and limited perspectives that led to dismissing your experience. Congrats on finding what you needed with adequate depth to feel confident in the result.
I’m sure you’re familiar with the concept of masking, especially in late diagnosed females. You might appreciate taking the CAT-Q test, which is free and well explained on the Embrace Autism website.
Thank you for speaking up to share your experience. It takes a lot of courage. It’s nice to see a mid forties woman representing a broader view of the Autism Spectrum.
I’m 44 and late diagnosed as well, and a writer and creative type. And I just got an ADHD diagnosis too.
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.
Hi! I just found you through this channel. Thanks for sharing your diagnostic experience in such a human and honest way. I am 42 years old, and got my diagnosis just 6 years ago. Also academically gifted, and creative, raised by very loving parents that unknowingly were very appropriate for my autistic needs, so I went through learning very good models, and undetected. Too often my friends would label me as extraterrestrial, quirky, etc, and got really hard times at school and high school. At university... we're nobody paid attention too much to quirkiness.. i felt some relief. I wish the best in the rest of your process! For sure Gender and age in your case play against the uninformed generalized preconceptions, but this is being slowly improving through the publications in social media of autistic women just like you.
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.
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’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.
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
How did it go?
Thank you so much for sharing your experience. I can relate to so much of what you shared and am just coming to terms with the probability that I may be autistic and have ADHD at the age of 58. I also relate to CPTSD and have experienced anxiety and depression throughout my life. It helps to know that we aren’t alone. Thank you for your courage to speak about a topic so personal.💞🌸
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.
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.
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.
Emma I just found YOU. I'm so excited love. My son was diagnosed at age 3. He's almost 21 I can't wait to watch what you have experienced!!! 💞💞💞💞 Take 😘 care. My thoughts are with you dear. 🥰
Thanks for opening up about this so gracefully and truthfully.
Thank you. This is incredibly helpful. I’m 58 and went on the NHS waiting list a few months ago. The living hell that was school - well put.
Thank you for giving me the courage to consider going private if the NHS takes too long or gets it wrong.
Thank you I've just self diagnosed. I tried to get an official diagnosis but you know that deal. I want to say I see you struggling with the use of the words Autistic symptoms and such. Just trying to help you; I've discovered my best word is traits. Autistic traits it just sounds better than symptoms and such don't you think?. Thank you so much please please keep the videos coming. Oh and by the way; I turn 60 this year. Also in your other video I really identified with the air conditioner being shut off. This is one of the very first self care things I recently learned for myself. I now have radiant heat no blowing heat. Take care....❤
Hello Emma I have watched 5 min and I have related entirely to you, diagnosed major depressive disorder and anxiety, I have CPTSD but I feel like a chicken lost without her head on most the time. I think I have ASD also completely fit all the symptoms. Masking I am great at realizing this I am trying to live my life and deal with all the stresses. I am also 44 this year 2022. Not alone!
I know I am late commenting, but I must tell you how much courage and determination your video has gave me. I am 64, a mother of a son with autism spectrum disorder and ADHD, who also got hos diagnoses late because he is so bright and copes so-and-so etc. A year ago, when he got hos ADHD diagnosis, he said to me: you have both too because we are so similar. He lives in Scotland so I could not visit his doctor, but I booked an appointment to a GP to be assessed here in Finland where I live. I had to wait 3 months to see her, because I was not ”an acute case”. Then we met and talked, I was very anxious all the time because this was the first time I was seeing a doctor about my mental health. I had weathered my depression, anxiety, eating problems, traumas by myself because I was so afraid to be mistreated by the doctors (I had been misdiagnosed a couple of times in the physical side and that had lead e.g. to a paralysis of my leg, and I have probably Ehlers-Danlos syndrome with drug hypersensitivity but there are no doctors to diagnose that if one is not a child). Well, the doctor could not decide and she consulted a psychiatrist. On the basis of the report of the GP he dismisses me. ”It is no use to diagnose autism when one is as old as you” he writes to me (without seeing me and talking to me). ”You may have social anxiety and panic disorder” (the GP had noticed my anxiety, at least!). Oh dear. They look only the externals: ”I have coped.”. There is no way I they will believe me when I tell that my childhood was hell, my puberty was more than hell, my youth was a little better, but until 40 I was really a hermit and a loser, though I was married and had two children. After that I became I writer and found a career and became better to express myself. But nobody knew anything about autism. It was only the Rain Man and the children who could not speak and had meltdowns. Only now I can connect the dots: that was it. But the doctors in the public healthcare have not thought about this at all. I was first very depressed, but then I chose to be privately assessed. It is very expensive, so this is a big decision, and I know that my husband does not understand why I want a diagnosis, even though he supports me as he has always done.
I apologize for the spelling mistakes. My eyesight is not good and I need new glasses. They are also sooo expensive. It is not fair that you have to cope so much and pay so much to be functional.
Hi really enjoyed your video thank you. Very informative and from the heart. I am an adult female looking for a diagnosis. I have contacted the psychologist from the link you provided. I have the label of Bipolar but have been misdiagnosed . I have had a similar experience to yourself. In that I have been in the mental health system since i was in my early 20's I am now in my early 50's. Itoo have been self managing for many years. I think I may have PDA/ADD/Dyslexia. Wishing you all the best and hope to hear from you soon. You are a wonderful Woman, thanks again x
This makes me realise how important it is for me to get help in the now. Your openness is refreshing and brave
I’m 43 and waiting for my assessment. For me I had to beg a doctor to look a little beyond the anxiety I present with, because that does not explain me or why I’ve been on and off antidepressants and anti anxiety meds since 17 years old. You do have to push don’t you. I want to hug all women. All of us.
AQ50 threshold is 26, with about 80% of autistics scoring 32 or above (from embrace autism). So your 39 scored high. I scored 35.
I just had to edit again and say how wonderful you are. Thank you for putting this up. Hugs xx
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.
Thank you so much for this video! That was very insightful and real, and very relatable. I really appreciate it. I'm about to be assessed as well and I fear a surface level stereotypical assessment, especially as a woman later in life. Unfortunately, a private assessment wouldn't be an option, so I hope everything goes well. I liked the point about how you develop strategies. I do the same, even in terms of trying to make my mind work, so my executive dysfunction and my generalized anxiety don't act up too much. I'll remember to mention that, too :).
Thank you for EXITING, doing this, as well as be so Brave, Courageous and Strong ✊🏽💞🙏
I don't know if you'll read this, but I just wanted to say how ,uch I enjoyed listening to your video. I have not heard anyone come across as so human (what I mean by that is not acting or drama queen, just a real person,Minot showing off, but just being real, open and honest - AND I THANK YOU - IT IS SOOOOO REFRESHING. I am 39 and I believe I am autistic.
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.
By the way I think you are very brave for doing this video. I was diagnosed at age 55, two years ago. Can't wait to look at your sci fy books.
I hope you enjoy them :)
Hi, I am glad to have stumbled across your video. I am a female in my early 50's and I am going to be interviewed for Autism Spectrum Disorder Diagnosis in December 2022 for about an hour (this is a year after making the appointment). That interview will determine if I meet the requirements to be tested extensively. I was inclined to take the AQ-50 online due to your encouragement in this video and my score is 43. I am very nervous for this initial interview coming up because I don't want to be humiliated for wanting an assessment. I feel as though people will think I am wasting time and resources because I am an older woman. I think very literally and it matters to me to have a correct diagnosis. I have been diagnosed all of my life with anxiety disorders (especially social anxiety), depression, eating disorders (atypical), ptsd, and dissociative disorders (atypical), but none of them really added up in my mind correctly. I was bullied and teased throughout my childhood and adolescence in school because of my quirks and behavior. I have obsessive interests and have very few friends or people in my life. I honestly don't know how people go through such extensive testing for so many hours without having a meltdown. I will be sure to check out your books. Thanks for sharing your story.
🤞Did everything work out?
@@KW_814 Thank you for asking. My appointment is next week on December 13, 2022. I am soooo nervous. I am writing everything down about my life that I can think will help with the interview because sometimes when I am in a really stressful situation (which this is one) I loose my ability to speak or I can speak, but I forget what I mean to say (my working memory is poor because of excessive anxiety). I will update if you would like me to after the appointment is over. I am terrified of being rejected and/or dismissed. I just want a chance to go through the diagnosis process. It will be expensive financially for me, but I need it for my own peace of mind. Thanks so much for your response to my comment. It means a lot to me.
🙏 did everything work out okay?
@@KW_814 Oh, yes, thank you for asking. It went better than I could ever hope for. The psychiatrist was able to see my autism right away! She told me before I left the hour appointment that she is 100% certain that I am autistic. I have also PTSD and anxiety disorders (including social anxiety, of course). I have to go back on Friday, December 16, 2022 for a three hour testing session. I will be tested with four different tests that include the ADOS, WAIS, SRS, ABAS. Not sure what all of these are or test for though. I know she said one will be some puzzles. I like puzzles, so that one might not be so bad. The problem is that my anxiety often takes over my brain when I am in stressful situations so I fear I will be unable to think. I cannot express how relieved I am that this psychologist was kind and professional with me. She said that I made her job much easier and she was impressed with me because I brought loads of papers for her to read. I separated them into the categories of: The reason I am seeking an Autism Assessment; Family and Extended Family with Autism/ADHD/Traits; Medical/Hospitalization/Mental Health History; Work History; Education History; Sensory Issues; Young Childhood Social Issues and Eating Issues; Primary and Secondary School Issues including bullying by peers; Social Relationships with peers/friends/family/teachers examples; Social Interaction Issues and Communication (examples of how I do it); Executive Function Issues; Special Interests; and Stimming. I also brought in five online questionnaires that I took from the Embrace Autism website.I am nervous about Friday, but I do feel like the Dr. actually saw me, listened to me, and took me seriously and that makes me feel so relieved!
@@mountaingirl2222 excellent! The points you have mentioned describe my childhood. I will use these when I have my adhd assessment👍
Dear Emma, I really admire you for sharing all of these. It really helps. Thank you
Thank you so much for sharing your experience. So brave.
Thank you for this valuable knowledge it was so insightful! I will try NHS then go private if needed. I'm 36 and feel very different and have been single for 8 years!
Congrats for speaking out and being strong. I was never tested but I suspect I might have it too. I've been told by a few people about my 'awkward' personality, and that I need to change but never seem to. I also have a hard time speaking on camera or in public. People are still ignorant and blind to things related to mental health, and don't give proper attention to it, which is a shame. Hugs to you.
I'm a 51 yr old woman also in the UK and I can't explain to you how much this video ahs helped me. I've been questioning if I'm autistic myself over the last couple of years, in hindsight of analysing my issues and coping mechanisms for as long as I can remember.
One thing that has put me off seeking a diagnosis until _literally_ a few days ago when I made my first contact asking how to do so, was your story of your NHS experience. I also love our service, but I also have fears that as a woman of colour, I will have to fight those biases too, as I have throughout my life. However, I know that I'm not going to be able to move forward with the extremely hard last few years of my life, which I think I might have had an autistic meltdown, unless I can understand why I'm the way I am. I also am not in a position to pay for a private diagnosis, but at least I know what to expect.
Thank you so very much for taking the time and energy to explain this to us. ☺🤗🧡
I was diagnosed at 43 - 6 years ago. (I also have spent from my teen years to the present been diagnosed mentally ill with anxiety and OCD.) I was horrified when I my psychiatrist first suggested it as a possibility. I told my mother, assuming she would agree that my psychiatrist was wrong, but she said “Oh, I saw a documentary 10 years ago about Aspergers and I said Wow. That’s my daughter to a T.” I was initially horrified because before I was placed on disability, I was a teacher who spent everyday with a blended classroom, responsible for students who were autistic. I worked best with those students because (I now realize) that I related better with those students. I spent a whole year after my diagnosis refusing to admit that I was autistic. When I was also diagnosed with dyspraxia and sensory processing disorder, I started to see why I experienced life as a child/teen/young adult/middle age adult the way I did. My 11 year old nephew has started to see a psychiatrist and my brother and sister-in-law gave a family history - including me being autistic - and his doctor is in the process of testing and diagnosing him for what they are positive is autism. I can’t say that - other than gaining insight into my growing up life - that knowing I am autistic has changed much for me, but I feel grateful that knowledge that I am will possibly make my nephew’s diagnosis and what can be done to make his education and social processing easier for him. You are very brave with this video and this will definitely help other women like you and I. Good luck with all you do in the future. I am now off to find some of your books because I’m very interested in reading them. Thank you for giving autistic women in their 40’s someone to relate to, because it’s so rare that we can.
Thank you so much for sharing that. I am so glad your nephew has you as an advocate. And thank you for your kind words. I spent quite a lot of time looking for more women in their 40s talking about this on UA-cam, and while the younger women talking about being autistic are wonderful, it wasn't the same experience as I was having, so I thought 'oh... I guess I will have to be the one I was looking for then, so others will be able to find someone else going through something similar.'
Thank you, it takes a lot of guts to step outside of your comfort zone especially to sit in front of a camera that feels like it’s staring into your soul.
I am on a very similar path at the moment. Autistic diagnosis done but I’m dead sure of inattentive ADHD and possibly CPTSD. It’s sending me broke, but it’s worth it.
At first it’s hard to believe but the more you learn the more you know and confirms so many aspects of your life.
I hope you read this… Thank you!!! I could be you.. down to the letting my grey hair grow out lol! But seriously, I identify so much with what you have said. I’ve been diagnosed by my psychologist a couple weeks ago but I’m waiting for an official diagnostic from a private clinic… in 7 months! Long wait here in Canada. I’m also a creative, i’m a professional hyperrealist artist. Again, thank you so much for sharing 🩶🩶🩶
Thankyou so much I did end up sectioned I hospital this year was suggested there about autisum currently awaiting an assessment appointment my gp said I could wait 2 years here for that and as stands mental health is a total mess having been diagnosed with a personality disorder in the past major depressive disorder and more I feel life is pointless and right at this minute I want to give in because of reasons. I have tried to kill myself due to not being heard and the road seem far to long to get there. I don't have friends can't make them . Plus so much more I'm 47 and struggled my whole life being treat awful because of reaction and my behaviours. Now just not listend to regarding it possibly being right I believe am fit in so many parts of my life childhood my many issues so thankyou you have given me some hope much care to you x😢thanks so very much xx❤
Thanks for sharing, as I am about to refer myself for a assessment but I am a bit scared, as I am 44 now, from a child I always felt different and still do, sometimes I feel like I am from a different planet to most, my mother said the teachers would say I was a bit slow but I knew my work, thought it was because my older sister was considered a genius and was a honour student, so they expected the same of me, am a very detailed person, I pace when I have a lot on my mind, I like things in order, I like to be fair always, so thank you and all the others that share your stories, as it helps
I have recently had an "assessment" with the NHS and they told me the exact same thing that the man told you. I can't afford a private assessment and I feel so lost, yet slightly hopefully with what you have said!
I'm 52, and going through the diagnosis process. Fortunately, i live in an area that has a good reputation for autism services. I took some persuading that i could have the condition, but about a year ago, I realised that I probably did.
Although I have a number of skills (from programming to landscape photography to writing fiction), I can't hold down a job without burning out very quickly. Experience shows that i last two weeks before seizing up.
Watching you reminds me so much of my own story. I am 42 now and going through the diagnostic process.
I'm a male about to go through this assessment. Thanks for opening up and sharing
🧠🌱So belittling. Common interest is 1 of my go to for finding new friends. 🇺🇸14yrs ago at 36yrs old. Dealing w/ T1D & ASD people making assumptions on my behalf, So Frustrating.
Positive Vibes &/or Prayers for ALL that are going through this Assessment Process(Female or Male) 🙏🏼
Thnx for Sharing w/ us🌱👏🏼 You’re an Amazing Woman! ❤
I'm 60 and just figured it out. What a relief!
The prices in the UK vs the USA are dramatically different with our insurance. Our son's private eval through a neuropsychologist was $4000 USD. It was either that or a long waitlist to go through insurance. We are now doing reflex integration therapy for our son's neurodevelopmental delays. It's a movement therapy (not behavioral therapy) and that's rarely covered by insurance, either. But our son has seen such amazing improvements that it has been worth the the extra cost!
OH MY GOD. i feel this. My neurologist recommended a local doctor to do my assessment. They would not take insurance. I was supposed to pay $4000 to get an answer. I needed an answer and was trying to figure a way to pay for it, ehen someone in the Autistic community recommended someone who deals specifically with late diagnosis in woman. They were amazing and i paid a fraction of the cost of the other one. I so appreciate you posting this video, we have many characteristics in common. Im sorry you had a bad experience the first time around. 🧡✅🙏🏼
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." 🤣
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 so much for this, 30 yr old woman and thinking of asking for an assessment.
It's a hard place to be and I do feel out of my depth and alone.