Autistics Share: Professionals Miss the Mark in Recognizing Autism in Women

Author by Aspergers GirlsPosted in Aspergers, Aspies, autistic, diagnosis, identity, label, mental health, psychologists

 

I recently asked 60-plus readers from across the globe, who believe they are autistic/Aspie or have been diagnosed with autism/Aspergers, this question:

“What has a professional told you when you were seeking out an autism and/or Aspergers diagnosis?”

Here are their responses:

  1. The first psychologist diagnosed me with Bipolar-II after speaking with me for only ten minutes. He based his entire diagnosis on anxiety, depression, and the fact that one night, out of 365, I couldn’t sleep and had restless non-stop thoughts. He didn’t say I met most of the criteria for the condition, but recommended medication anyhow. It wasn’t until about twenty years later that I figured out, after my child’s diagnosis, that I was likely autistic.
  1. I was told: “You write exceptionally well…and have two diplomas, how can you have Autism?. It’s just depression.” It took me six months of begging to get my doctor to agree to refer me, but I had to find the doctor (to be referred to) myself…Once I found the doctor, (a psychologist who specializes in ASD in women), she validated me and diagnosed me within two appointments.
  1. I was told it’s a male disorder and its environmentally caused… I wanted to punch him… He knew my daughter was already diagnosed.
  1. My therapist, who isn’t an autism expert, insists I’ve been misdiagnosed because I have too much insight into my own behavior and the behavior of others. I guess she doesn’t realize we are pattern experts…
  1. I had a good experience with the guy who diagnosed me, but other docs have been iffy.
  1. It can be so frustrating to be told that you aren’t something that in your core, you know you are.
  1. “But you seem so……NORMAL, you can tell right away if a person has it or not and I can tell that you don’t.”
  1. I took him (doctor) some paperwork I’d annotated and said I think I may have Asperger’s Syndrome. He looked me straight in the eye and said “You do not have Asperger’s Syndrome”. He had known me on and off for 40 years. He also said “You do know that we will have to get the Mental Health team involved don’t you” !!! Of course I did. Luckily the team I did see we’re brilliant and they said they were getting a lot of women coming forward…Apparently there was a ‘wealth of evidence’ supporting my claim.
  1. ‘Why do you think you have Aspergers? It’s just the fibromyalgia and depression, but I can ask around about how to get an assessment, if you want?’
  1. I got my diagnosis 20 years ago when seeking help for other things. At the time I had never heard of autism or Aspergers and was apparently one of the first girls in Sweden to get the diagnosis, so my experience is quite different to most females my age that are on the spectrum.
  1. I was told there was nowhere that diagnosed it that I was unemployable, and of no value to society; why did I need a diagnosis wasn’t that info enough? And I wasn’t allowed any help, any counseling…When they did diagnose me they said I was to be supervised at all times incase I tried to make friends, and then I asked my doctor what happened now. He said, “nothing, you’re on your own.”
  1. “You can’t have Aspergers but maybe another developmental disorder.”
  1. …Diagnosed out of the blue by a friend who was a psychiatrist. Threw me a bit as I had no understanding of either myself or the syndrome. Just knew I operated right of whatever right was… Now I tell physicians etc. what I am and not once have been challenged.
  1. I went to a standard psychiatrist…he told me: “autism in adults does not exist” and said I was just “severely maladapted”. The expert in autism was very skeptical I was autistic and asked me over and over why I thought I was… I returned a second time with a written list, Aspie style, of my never-ending evidence. They finally accepted to test me…
  2. …the doctors never told me that I had Aspergers. Two years later after my second child was born…I was diagnosed with Aspergers again…For 10 years I had this diagnosis that I wasn’t aware of. The only reason I know about it now is because occasionally I would read my medical records. Back then I didn’t think anything of it. I just assumed that it was part of depression. Nothing more! So I never questioned it…I just can’t believe my doctors couldn’t let me in on it. It was like it was a secret or something. My mind is just blown.
  1. “You cannot be autistic as you can make eye contact and have a sense of humour and empathy.” That all changed when he saw me have a meltdown and met my father.
  1. I have not been ‘officially’ diagnosed, and after seeing how my son was treated by the drs…am glad I never was…
  1. I was told it was because I had a traumatic childhood, and Autism is rare.
  1. Before I got diagnosed I was told by the head of a department of psychology at local university that I was making it up so I could justify my son’s diagnosis. And he added that years ago we’d just had be considered geeks or nerds and didn’t need a label. Later, I found a Buddhist psychologist who said, “I’ve never met an enlightened autistic genius before.”
  1. My doctor laughed in my face and told me that people with Aspergers don’t get married, have children or hold a job.
  1. “You have gotten this far in life why bother?” was the question I was asked.
  1. She said, “You don’t want that diagnosis following you around, they could take your children.”
  1. “You adjust too well in everyday life situations. What do you need a formal diagnosis for? You don’t need professional help.”
  1. When I was 22 I went to a psychologist and told him I suspected I had Asperger’s and right away that day he said I couldn’t have Asperger’s because I made eye contact with him. He diagnosed me with social anxiety. At 28 I went to a female psychologist who specialized in women with autism and she diagnosed me after two sessions together.
  1. I told my counselor about a time I took my daughter to a small local farm… said she saw it as an adventure. Later he used the “You can’t have Aspergers coz your empathy is too good; remember telling me about your daughter on an adventure??”
  1. “You seem to cope OK, it’s not like it’s really affecting you anymore…” “You’ve gotten so much better since you were a kid, what’s the point picking at old wounds?”
  1. I self-diagnosed… I sought out many resources…they asked me how old I was and if I had a job, if I were in a relationship, and could drive. That felt demeaning…I then sought out the therapist I am currently with. She has been absolutely amazing. One of the first things that came out of my mouth with her was that I thought I had Asperger’s Syndrome. She was very skeptical at first…After about 5-6 months and about a dozen sessions she finally could start seeing the pervasive issues I was having…
  1. “You’re much too social!”
  1. “You handle yourself too well,” is what I have been told. Um…that has taken YEARS of practice FYI, of which I am constantly having to “fine tune” myself. The inner turmoil this creates in me is draining to a level I cannot even begin to describe. Every single thing out of my mouth is thought out, I have to force eye contact, (people who know me well notice this) and when I finally get my alone time at the end of the day I am absolutely done. I am a waste of space by then, I don’t even know how I am still married because I am a handful at the end of the day…I have never been so confident of anything in my whole life and I would literally bet my life on it, if I could find someone who would actually listen.
  1. “Well, you seem to have done well for yourself, so you’re fine.”
  1. Got told I couldn’t get a diagnosis but I did however fill two out of the three criteria and she believed it was more dyspraxia and add/adhd. . Went for the adhd …the last one kept looking at the clock and told me, “Sorry we can’t diagnose you because ..[wait for it……] “You can cope.”…Can’t be bothered to fight anymore.
  1. For my son I was told…. “He is so high functioning, you don’t want him carrying around the disabled label his entire life.” For me, it’s just too much to even type.
  1. Mine said I was textbook. No problem. Not sure if that’s a good thing or a bad thing…
  1. After handing a huge stack of articles that I notated and highlighted… [I was told],”I understand this is really important to you.” Then she changed the subject. A different therapist, after also giving him a pile of notes, said, “Everyone is a little autistic, but you’re nothing like my male clients. You can have a conversation.”
  1. I was told by the psychiatrist, I was evaluated just once by, that he doesn’t see me as being autistic because I can have a meaningful conversation, can make eye contact, and because I can describe my feelings and analyze my behavior. Then I saw a counselor a few times after…and she told me “We can look through the diagnostic manual together, but I don’t think you’re autistic. I have referred patients for autism testing before, and they were really obvious. One man I evaluated is obviously autistic. He is in his late 20’s, lives in his parent’s basement, can’t make eye contact or hold a conversation, and constantly moves around like this. (At this point, she imitated the guy.) “You are very aware of your own thought processes and behaviors, and so even if you MAY have some autism, you are doing just fine. The man I was talking about has never had a relationship, and here you have several children and are in a relationship. Let’s just work on changing your thought patterns, and not on seeking a diagnosis.” Sigh…
  1. Yep I got that from my ADHD professional…  “I see people much worse than you and you seem to be coping fine.” What utter bullshit.
  1. I sure do wish that these “experts” understood just how much energy and effort it takes for me to prepare myself for each outing and social interaction, and how hard it is for me to force eye contact. I wish they understood the constant struggle of maintaining some level of functionality, and how I function better with some tasks and worse with others and it changes with each day or each new change in my life. Even tiny changes throw me completely “out of whack”, and the adjustment period can take a while. But when I try to explain this to the professionals, I don’t seem to make any of this clear to them, or they dismiss me.
  1. When I went in to get a referral…I gave my doctor a list of reasons why I believed I was autistic. Mostly because I was really nervous and I have a very hard time communicating and processing my thoughts into words. I was told that he had never known any one with autism who could make as elaborate lists like I did and communicate as well. He proceeded to tell me that only younger children really get diagnosed and it would be hard for me to get a diagnosis. I kind of gave up after that. I know from my own research that I am and it is good enough for now, until I’m able to afford to get a formal diagnosis.
  1. They always want to explain away the “symptoms”. When I went for my neuropsych results the doc told me I met the criteria and she’d have diagnosed me when I was younger but couldn’t do so now because I was too functional, having been married and working full time…what happens to people with a dx who go on to achieve success? Are they “Cured”? Do they graduate from the diagnosis?? Makes my brain hurt.
  1. …I’m too “adjusted” according to the doctor although he didn’t quite understand how I managed to nearly implement two such distinct personalities. I gave up on an official diagnosis. I’ll just be one of the undiagnosed masses that relates too well.
  1. I haven’t found anyone so far unless I travel out-of-town an hour and a half. The Psychiatrists around here took forever to come out of the dark ages.
  1. “Yeah, but you’re obviously high functioning.”
  1. I walked out with yet ANOTHER “Generalized Anxiety Disorder” diagnosis. She pretty much told me that since I have a job that I’ve been able to maintain, could pay my bills on time (you have no idea how many defaults/bill collectors I’ve dealt with before I could finally pay bills on time) and I “seemed” so personable, that I couldn’t have Asperger’s. Pretty much was told that since nothing is impairing my life functioning, I couldn’t have it. Little do they know how much work I’ve put into myself to be able to function the way I do. Just to take a shower every day is a struggle sometimes. When I finally found a doc to assess an adult, first appointment I got a verbal “oh yeah, you have Asperger’s”, then many sessions of seemingly endless tests, puzzles, questionnaires, written assessment & diagnoses…
  1. I wrote down everything I could remember from my childhood and teen years to now and brought it up to his attention. So he goes to tell me that he wouldn’t dx me that day with Asperger’s but told me that I was bipolar type 2, OCD, severe anxieties and major depression. He said that seeking an Asperger dx for females is tough, there are no “rules” in the dx for females as we are polar opposite of the males but some things are similar doesn’t mean we are. Ugh, I was confused because there’s no part of me that is bipolar like at all but I can see how bipolar and depression can confuse the dx part for a Dr. when it comes to separating those and Asperger signs in girls/women. After talking to my therapist she looked at my chart and he did dx me Asperger’s but he still has me as bipolar. I’ve come a long way from years ago as a child being labeled as slow and learning disabilities in math to early 20’s clinical depression to 30’s major depression to 40’s bipolar 2 and Asperger’s. It was a fight and still is as some don’t agree…
  1. The whole process consisted of me being asked why I think I have Asperger’s. I was expecting a questioner or test of some kind. I had no idea what to say so his response to whatever I said was, “You do have some attributes.” He looked down at me the whole time and the report he was going to send never showed up.
  1. “Girls and adults can not have autism” — multiple Drs called…
  1. I was told, “Why do you need a diagnosis if you already know? What benefit would that have?” Previously, I was given OCD GAD by a Psychiatrist who actually fell asleep during our appointment. This is why I tidied up her office, I didn’t want to wake her and I was bored. lol.
  1. The psychologist I’m seeing, who I’ve been seeing for about a year, specialises in Autism (supposedly)…She has made some unprofessional comments such as flippantly saying “I’m probably on the spectrum too.”…She seems more concerned about my financial situation than me receiving a diagnosis.
  1. I told my GP that I would like to be referred for an official diagnosis.
    Looking at me with obvious doubt and disdain over the top of his glasses, he replied “What makes you think you have Aspergers”? I did get my referral though and after spending an hour talking to the psychiatrist I asked “Sooooo, am I right”?
    He replied “Yes, definitely. From everything you’ve told me, you most certainly do”.
  1. “You don’t look autistic. You seem friendly enough.” He also said I was too pretty to be autistic. And he asked why I wanted a diagnosis. “You seem to function so well. You are too smart to be autistic.” He was a total meany about it.
  1. “If you had Aspergers, it would have been diagnosed when you were a kid.” (Aspergers didn’t exist as a diagnosis until I was in my 20s.) “Girls don’t get Aspergers. Only boys do.” “Your trouble with social skills is due to your parents not teaching them to you. It’s not because of Aspergers.” “It’s no use getting a diagnosis. There isn’t any treatment.” “It’s fashionable to say you have Aspergers.” Oh, and, “But you appear to be very intelligent!”
  1. Oh I’d love to share the numerous times Drs and professors and other therapist told me over and over that my daughters don’t, or even when finally diagnosed, can’t have ASD because they make eye contact or they look happy…
  1. I haven’t been officially diagnosed. As others have posted, I was told that I would be fine if I just used some positive affirmations when I was having anxiety. This was from a doctor of psychology. After more than 15 years of therapy, that I paid out of my pocket, and still little progress.
  1. …The one that impacted me the most was the Dr trying to talk me out of diagnosing my son and inadvertently myself because we would be labeled mentally ill… She chose the words to instill fear of a diagnosis. If it was another, it would be the dismissive nature of the one male Dr who was holistic minded, discounting autism…and the rest as made up illnesses, we could fix by simply not eating junk food…
  1. I make eye contact (I don’t, I look at mouths), I’m psychotic, I’m not ‘that’ bad, etc.
  1. “People with Asperger’s don’t have friends” – psychiatrist. “Your difficulties with communication are quantitative not qualitative, so you don’t have autism; you have…personality disorder and schizoid personality disorder instead.” Six years after that I get an autism diagnosis.
  1. Me: (weeks post my son’s diagnosis) Can you refer me for an autism assessment?
    GP: There is little point, as there are currently no services in the area, and besides, a diagnosis of autism is largely speculative anyway because it is only based on behavior judged subjectively and nothing scientifically measurable.
  1. “Why would you want a diagnosis? I don’t understand what you think it will achieve.” And “you do know they* have no empathy?” And “we’ve looked into it and there’s no funding for adult diagnosis in this area, sorry”. *autistic people, I assume.
  1. With my youngest son several people asked…if he was autistic but, I always said no he’s not because he looks us in the eyes and he speaks very well. There were stupid billboards all over that talked about early signs of autism and those were the two that had stuck in my mind. It took us eight years before we finally went to neurology to find our answer. After talking with the neurologist, that’s when we started to realize the similarities of other siblings and my hubby. With my daughter and me, it took many more years because of the typical girl differences.
  1. We didn’t even start to wonder until she was about 14 when anxiety really started to kick in. Then, I was told multiple times by multiple people that she couldn’t be autistic because she’s too smart and has friends. UGH! It was a beautiful day when we finally became part of a study that specifically was for the difference in male and female siblings with autism. They knew what to look for because it was actually part of the study. Once you know, you can start to be chill with who you are and start to work on the things that aren’t letting you be comfortable.
  1. We got: “It’s just her personality and she’s introverted.” Also: “She’s around adults so she reacts like an adult.” Great, but it was more than that. She didn’t understand why the other kids acted the way they did. She played by herself, and didn’t have friends. She wouldn’t respond when called. I thought it was ADD at first. Frustrating when it could have been dealt with a long time ago.
  1. The first Psychiatrist that saw my daughter (age 4) at time ruled her out because: “She can’t have Aspergers, she has an imagination!” and it was just age-stage related! He had diagnosed my son when he was six, four years earlier. Lucky we [sought out] a second opinion and [she was] diagnosed with Aspergers…
  1. With my daughter, there was never any doubt…she was evaluated at age 4. But the parents of some of the other children in the program told me over and over that there was no way she could be autistic because she had some eye contact, did not use echolalia…and did not have tantrums (um yes she did, but they mostly happened at home). This was over 10 years ago, and despite her diagnosis, for a long time I heard those parents’ voices in my head and had a hard time believing it was indeed autism…
  1. For my daughter we got “she makes eye contact and desires friends so she can’t be on the spectrum”
  1. I was told by a clinical psychologist that ‘I wanted’ my son to have a ‘problem'( ie Aspergers); because I have it!!! Of course I didn’t ‘want’ him to have a ‘problem’ and I don’t see it as a ‘problem’, I just knew he had Aspergers and we needed a professional diagnosis for school purposes…
  1. For my daughter: “She’s not autistic, she doesn’t line things up” and “I think you’re trying to see something that isn’t there… how is your home life?” (Implication: I was attention seeking!)
  1. My own diagnosis at 48 was not a problem but getting a diagnosis for my 14 yr. old son has been 4 yrs of hell. Drs again this morning after a failed referral and now they say he has behavioral problems. Is there any wonder? I’ve heard it all , he makes eye contact , he watches comedy’s so has a sense of humour, he has choices but chooses to play up (meltdowns) , etc etc. Ive just been reported to Educational Welfare because anxiety is getting so bad he doesn’t want to go to school…
  1. The first one said she wouldn’t test me because I could explain my problems (???!?!!!) and I could make eye contact. Like I was too “articulate” because I made a list of all my characteristics/issues and read them out loud in a way another person could understand… Oh, and I graduated college, so there was nothing “wrong” with me.
  1. I was told it’s not possible because I’m too intelligent, can make eye contact (not really, I learned a trick) and I am too happy/friendly. I have a great “normal person” mask that gets me through but I can only wear it for a few days at a time.
  1. A psychiatrist told me: ‘You can’t be autistic because you felt sad when your Granny died…’
  1. My doctor told me that I’d never struck him as being “Aspergic” and that I had too much eye contact. He really wanted to make it a mental health issue and sent me to be assessed for Bi-Polar and Social Anxiety Disorder before he would refer me.
    My doctor’s picture of Asperger’s is the very, very stereotypical male presentation and although he would never say it I think he still believes that I cannot have Asperger’s because I don’t present like a math-obsessed robot.
  1. First response was there was no way I’d have made it to adulthood undiagnosed because I’d be non-functional. This was from a speaker speaking about autism…
    Second was a counselor who said I couldn’t be autistic because I had empathy, and had learned to work around some of my issues. “Autism isn’t something you grow out of.” I’ve pretty much given up getting a professional diagnosis. Thanks to the many resources online I’m settled in my own mind about the matter.

Other Responses:

It’s odd to me they always cite evidence of our apparent ability to function “normally” in society. But to me it’s no different from someone with a physical handicap being resourceful out if necessity. Whether it’s using a wheelchair or other equipment, or limping clumsily from point A to point B because they can’t walk properly. Yeah, they got from point A to point B but it was a struggle and one where the pain was likely hidden from others. So for all intents and purposes, they functioned in the able-bodied world. Aspies can get from point A to point B, figuratively speaking, but they bump into a lot of social and communication walls and stumble in the process.

I am a male but the reason I comment is that, autistically, I present as a female. I don’t mean I have gender identity issues; I mean I Aspie like a girl. I escaped diagnosis for the same reasons that females escape them and I believe you could describe my autism as female presentation Asperger’s and it would be accurate…

This is totally crazy! I’m reading everyone’s comments and it’s making me cry. Making me cry at how unfairly we have been treated just in getting a diagnosis.
This is incredibly wrong and breaks my heart. It should not be this hard or difficult just to get a diagnosis.

Please share OUR words. Please send to professionals. We already know this. They don’t.

Thirty-Seven: 10 Myths About Females With Asperger’s Syndrome

Day 62: Females with Asperger’s Syndrome (Non-Official) Checklist

 Samantha Craft (aka Marcelle Ciampi), M.Ed. is the mother of three boys, one adult son who is on the autism spectrum. She is the lead job recruiter for ULTRA Testing, an autism educator, the author of the blog and book Everyday Aspergers, Selection Committee Chair at the ANCA World Autism Festival and is active in autism groups locally and globally. Samantha serves as a guest speaker, workshop presenter, curriculum developer, neurodiversity recruitment specialist, and more. She is working on her second book Autism in a Briefcase, written to provide insight to employers and agencies about the neurodiverse talent pool. A former schoolteacher and advocate for children with special needs, she appreciates the skills and talents of autistics. Diagnosed with Aspergers in 2012, she enjoys the arts, writing, movies, travel, and connecting with others. (More people know Sam by Sam because it’s her community pen name.)

meeeee

Published by Aspergers Girls

92 thoughts on “Autistics Share: Professionals Miss the Mark in Recognizing Autism in Women”

    1. I lost my driving licence for 3 months after remonstrating with the DVLA over another matter and telling them that I struggled with coping from the stress of a mistake that they had made because I was Aspergers. Their response was to cancel my licence until they had contacted my doctor and been assured that I was safe to drive. They told me it was a notifiable condition, despite my telling them that I had been driving for over thirty five years without incident, having a degree and having been a teacher and reared my own three children. Suddenly the DVLA were allowed to treat me like a potential danger to others!

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      1. Hi Jocelyn, just curious, are you a Filipina? I just recognized that name after spending many trips to the Philippines. Anyway, hope all is well with your life as an Aspie. Take care

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    2. I went to my GP with all of my gathered information and a letter I wrote to him explaining why I wanted a referral, he refused to look at my documents and told me to tell him. So I mumbled a few things off, and with an eye roll, a disapproving look and condescending tone (oh yes, some body language is quiet obvious) told me about how he was in a psychology lecture at Med school and when the lecturer talked about certain disorders his classmates all looked at each other – so, basically, inferred I was wrong. But “if I wanted to pursue it then pick a psychiatrist”, he brought up a list on his computer, I picked a random one, who is two hours drive away mind you, got my referral, and left absolutely embarrassed. I got in touch with Tania Marshall, she assessed me and diagnosed me herself. I’m glad I followed my intuition on this one and didn’t let the GP’s reaction put me off.

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  2. Thank you for sharing. Having just been told that I don’t have Asperger’s because it “should” have manifested as a child and the only real reason to be concerned is to teach people with Asperger’s how to function in society when obviously I do just fine, I needed to hear this. The irony: I was seeking help because I AM NOT functioning in society.Because of several misunderstandings between myself and the adults I work with (I have no problem with my students), I am in the middle of an emotional shutdown, and about to get fired over it. She told me it was because I have OCPD and have a need to control the situation and can’t take responsibility for my fault in the situation… I’m ready to scream!

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  4. Again, as i been reading this article i feel complete Peace its like something I agree with. I know and Believe I have it too, but i know the Doctors wont agree. I cant wait for the day when Women and Girls can be accepted for a Diagnoses and Treated for Asperger’s.

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  5. I have not been diagnosed and reading things like this makes me afraid to seek a diagnosis.

    I did tell a counselor once that I think I have Asperger’s. To be fair, he was not a psychologist; his education was a Master’s degree in counseling. His responded by laughing and saying, “You don’t have Asperger’s. I know a guy with Asperger’s, and you’re nothing like him.”

    I once told my doctor that I have trouble holding a job long term because I get stressed out and have meltdowns, and then I either get fired (employers call me “emotionally unstable”) or I quit because I can’t handle it anymore. He laughed and dismissively waved his hand and said, “I talk to lots of women with that problem. I advise them to get a part-time job, so they have more time to recover between episodes.” And that was the end of the conversation. Once I feel that someone doesn’t want to hear me it’s difficult for me to pursue it.

    I am certain I do have Asperger’s. Even though I do make eye contact (it’s uncomfortable, but I do it), and I have a sense of humour, and I have empathy (although I don’t always know how to express it), I also have huge, life-altering sensory issues, social difficulties, and health/gastrointestinal issues. All the female Aspie traits listed in the book Aspergirls fit, and my parents and husband agree. I would like a diagnosis so that I have something legitimate to tell people as an explanation for why I’m like this, but I just don’t know if I have the emotional energy to try to get one.

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    2. I’m very aware that most people see me as different or odd, so I spend most days inside my house. I want to scream out to them that I have Asperger’s,… but I doubt anyone would even hear me or care. I may as well say, “Hey, did you know I come from another planet?” They know my husband has Asperger’s, and although he is your typical high functioning male,..he comes across as more social than me. I have also considered seeking a formal diagnosis just so I can say, “Look, here’s the proof!” Still, I doubt anyone would even hear me, or care. I once tried to bring it up to my grown son, by telling him that there are many things I deal with on a daily basis that are difficult for me. That’s as far as I got before he said, “I don’t want to know”. Little does he know, his own wife appears to be Autistic; something else I know would not be well received by him. She appears to have more of the typical male Asperger traits. Now my husband and I are beginning to see signs of this in the five year old grandson, who’s already been diagnosed with ADHD. Like you, I don’t know if I have the emotional energy to try and get a formal diagnosis. After 62 years of so called living life;….I’m exhausted from trying to be seen, heard, much less understood. Thank you so much for your post!

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      2. Brenda M., it is almost impossible to get people to see things that they don’t want to see. I have a brother whose little girl has Asperger symptoms (strange though familiar to me flip-flops of emotion, angry resting face, sitting W style, imitating dancers on television, etc.) but he doesn’t really believe that I have Asperger’s so he is not prepared to see it in his own child. Our sister’s son was diagnosed four years ago. I discovered my own Asperger’s just about three months ago, when researching about females with Asperger’s in reference to my niece. I looked for her and found myself! I’m 51 years old (in six minutes) and I am just now finding out. I wish you the best.
        🙂

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  6. ACK. SO ANGRY at the injustice right now! As you know I had a similar experience…son was diagnosed but I was not respected for my own opinions on myself but as his mother they took all my words at face value…I was lucky that my therapist educated himself on this and knows I am def an Aspie.

    Went a few times to get my papers and had the worst experience of my life with another human being…the psychiatrist was one of the most degrading experiences of my life. She insulted me over and over, was confusing, harsh and rude. My husband thought so too. I had to convince her not to just diagnose and medicate me with ADD. At first she hated me. Truly. She asked if I could cook or operate the stove top and this was the conversation that was the most degrading:
    me “Well I take out the pans sometimes without oven mitts and grate my thumbs” (which I was explaining my struggles with DYSPRAXIA!)
    Her” That is NOT what I asked you. Answer the question properly. Can you operate the dials on the oven?”
    Me, “Um (looking at hubby)
    Philip “No she can’t. she gets them mixed up,”
    Her “So you can’t cook? So who does that in your house? Your husband right? After a long day at I am assuming hard labour he comes home to cook for you? That is unacceptable and inappropriate of you ( she turns to philip) You need to medicate to be capable. You are adversely affecting your children and husband. How do you feel about having such a selfish, self absorbed wife who makes you put in all the effort while she sits around waiting for things to get done and does essentially nothing?”
    I turned WHITE. I never turn white. I shrank back in my chair and shut off for the rest of the stupid awful appointment. Luckily my husband salvaged it and said he does not mind and I have other gifts. When he explained my gifts she was nicer and said, “Oh so you are the brains eh?”
    But later, she insulted me again and I said, “Remember that I am the brains which is why it does not bother me that I can not contribute with cooking.” She laughed and said, “Oh I must have insulted you. I wanted to get a reaction out of him and see how he felt about you not cooking. I am sorry if it was rude.” Apology accepted but it was unprofessional. If she wanted to know how he felt she could have asked me to leave or gone about it a thousand different ways. And I knew more than her!
    SO I took that but she fluctuated between niceness and rudeness the whole time. Very confusing and droned on and on about ADD and her different clients but she intimidated me so much I let her take over. I was worried she would write something bad, take therapy away from me or my kids away or my drivers license as she said I should not be driving. I told her I was fine in town. She was so mean and intimidating and then suddenly nice. My husband hated her too but he said she came around near the end and she offered to diagnose me with Autism if I brought her a list of ten things ( I did bring her a list but she wants a shorter one with clear cut) shouldn’t that be her job?

    She was very nice too at a few points but I would never mess with her and she was not a nice person in general. I would not give a lost dog to her.

    She admitted at the end that she knew nothing of Autism and that most professionals do not. She said, “I think you know more than me as it seems you have made it your obsession. I think you are a researcher so I would trust your opinion but I still don’t have any authority on the matter although I could add it to your diagnosis if you write me up the proof.”
    At the very beg before she even knew me she said “So why did you quit counselling with your son – was the therapist not spending enough attention on you? Did you need all the attention but it was given to your kid instead. Let me guess that is why you quit because you could not handle not being the centre of attention?” That was just from me giving a brief family history of diagnosis. I told her calmly that actually it was because the therapist did not look at my son once and kept looking to me and the appt was FOR him so I quit.
    After getting over being crushed I realized I would never want my papers from that woman anyway so I didn’t get them. Luckily, my therapist is on my team and the rest of my story is a good one! But its not thanks to the “professional” who thought she knew so much…

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  7. My name is Patricia. I am almost 47, Autistic as well as Epileptic with several co-occurring conditions.

    I started a project on January 1st aimed to make older Autistics more visible by giving a daily, unfiltered look into my life. I have recently expanded to included other Autistic adults.

    My project is called “Autistic Me 2016” and the newest part will be called “Autistic We” I’ve been approached about turning it into a book as well as doing a documentary about it. It’s a massive project which such potential. I’ve been letting it organically grow.

    Links to project:

    (website) http://www.persnicketypatricia.ca/autisticme

    (facebook page) https://www.facebook.com/autisticme2016

    Last year I was shipped a copy of NeuroTribes written by Steve Silberman before it was released and was a guest contributor and reviewed it for The Thinking Persons Guide to Autism.

    http://www.thinkingautismguide.com/2015/09/how-we-autistics-got-to-here-reviewing.html

    And recently I was interviewed along with 4 other Autistic women for a blogher article that deals with the subject you have brought up here.

    How Can We Do Better By Our Autistic Girls?
    http://www.blogher.com/how-can-we-do-better-our-autistic-girls

    I’ve been part of a CBC radio documentary, I’ve written op/ed pieces about disability awareness, and lots more.

    This is my personal facebook page:
    https://www.facebook.com/pgzwicker

    If any of this is useful, please contact. Thanks!

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  8. Please take this from an Aspie male who – with the information and vision of hindsight of hindsight – can say with certainty that I have never been involved with any Significant Woman I was ever involved with who wasn’t ASD (“birds of a feather, flock together.”)

    I can only add in here that 45 years ago, the Great Gnu, er, I mean Guru, Bill W, founder of AA, was absolutely certain that women could never be alcoholics (though he “13th Stepped” every woman who ever came to him with the problem and then said sexual addiction didn’t exist, and was proud of the fact that an AA convention could noticeably influence increased sales of cigarettes – which he claimed were not as bad as drinking – ask me why I have no involvement with his bullshit any more). Men are always happy to decide we are the only ones with “problems” and it’s you #$%%$#$@@!!! women who won’t give us a break (oh yeah, I know that argument well, having used it many times back in the Bad Old Times).

    Anyone who thinks our situation doesn’t involve all of us has his/her head firmly planted up their ass.

    There are any number of stories of women solving amazing problems (just for example, the woman who eventually married Alan Turing and is today recognized with him for solving Ultra, or the woman – whose name escapes me at the moment, I apologize) who was the primo codebreaker on JN-25, the Japanese code (which was like learning to decode an alien language), neither of whom could have accomplished what they did had they not been Aspie (go watch “The Imitation Game” to see the Turing story in all its Aspie truth). There are an endless number of examples if you know what you’re looking at. Put Madame Curie in the front of the line.

    Anyone who has ever accomplished anything that involved an infinite span of attention, an infinite ability to deal with data, and an infinite willingness to fight to the death about the truth of what they have discovered, is an Aspie. Once you know what to look for, we’re all over the place. Men AND women.

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    1. It is so clear to me that we are experts in ‘attempting’ to cope with life. I can mimic how others cope in a multitude of different scenarios. But how I cope when I am alone is a different matter. But as I am able to mimic what others do in so many situations so well, I have no idea at all how I feel about them, and this is what the professionals don’t see or understand. With my first appointment with my GP I felt extremely vulnerable. When I was describing why I thought I may have Aspergers I completely bared my soul, and I was still not believed. This was SOOOO painful and traumatic for me. It should not be this way.

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  9. It’s important to be careful. I know a lot of Aspie males who seem very able on the outside and they were told my their GP’s that they couldn’t have Autism. After a long fight they finally got a diagnosis. This seems to be the case for males and females as in the GP is the point where they’re chance of an assessment comes to a halt.

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      1. one of the three online tests for self assessments I have done states my neurodiverse traits lie in the areas of talents, not so much communication. Mmh what does that now mean? Thinking outside the box or ‘hopelessly in the clouds’? 🙂

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  10. Pingback: Everyday Aspergers Book Update and New Autism Posts | Everyday Asperger's

  11. Reblogged this on athenaminerva7 and commented:
    Yet another autistic woman and the 60 others mentioned in this post share how they are misrepresented by the medical profession still believing that aspergers only occurs in men, Wake up its 2016! We present very differently almost to the point that its a separate condition male and female aspergers.

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  12. When my son was identified as autistic I did a great deal of research on autism and saw a lot of it in myself. (As a child it was suggested to my mother by our doctor. My mother rejected that – back in the 60’s they blamed the mothers.) When I sought a diagnosis to confirm my belief I was told I couldn’t be autistic because I made eye contact and reciprical conversation. (Both take effort). Instead I was diagnosed with Depression, PTSD, generalized anxiety disorder, avoidant and dependent personality disorders. The feedback session for the MMPI/MCMI was a shaming, judgmental experience that I still haven’t recovered from. Second diagnosis from a psychologist that is an expert in autism confirmed I’m an Aspie.

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  13. I have very recently been diagnosed – but was very very unlikely to be able to seek an NHS free assessment simply because I cope – because I have adapted my life to my condition and am successful, happy and intelligent.
    The diagnosis I sought has been very freeing – it makes sense of my unusual life experience and I’m grateful to be at the place I am now.
    I have a blog – which isn’t directly asd related by I suppose is a reflection of the ways I have found to keep life simple, calm and manageable.

    https://hannahkenwayblog.wordpress.com

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  14. Ironically, Aspie women are really the best qualified ones to assess — we actually know what’s going on inside, and our self-assessments can be painstakingly detailed and accurate. Providers can be suspicious of agendas, but if they’re suspicious of us (which has been my experience), their cynicism just hurts us. And it shows they know all too little about women with ASD. Nobody actually wins. Sad.

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  16. Pingback: Selbstdiagnosen | neuroqueer

  17. Well, this is going to be a long one…but here goes.

    I’m nineteen now and was diagnosed when age…four, I think? I think the primary reason was I acted more like a boy in some areas. Far more aggressive, more frequent breakdowns, harder time making friends, and very much a “little professor”. Can’t tell you the amount of times I went up to someone older than me and started telling them why they were wrong about a subject. After all, I’d just watched a documentary of it on TV the night before. And this was while I was being diagnosed. Quite a few other things, such as lining up my toys, almost every friend I listed was at least twenty years older, and such things as that, but I had a whole lot of the girl attributes too. It was like I was somewhere halfway.

    I’ve been through a lot since then, and while most of my doctors have accepted the fact, I’ve met far too many who’ve been sceptical outside the profession. Teachers made it hardest. I specifically remember by teacher either in kindergarten or first calling me mentally retarded to my face. I’m fairly sure I was already smarter, though that’s not saying much with her. I ranted about that fact quite often. She’d take my books away because “If you’re really autistic, there’s no way you could be reading at such an advanced level. You’re faking it.
    or punishing me for working ahead in the workbook, because it was making the other children look bad and I obviously couldn’t do what hadn’t been learned yet.

    Bull. Complete and utter bull.

    When I had meltdowns it was because I was “a spoiled brat” or “a troublemaking attention hog”. Dealing with her and the other kids (who took on her outlook and constantly humiliated me) often ended with me huddled in a corner or under a desk in hysterics. A few times I started screaming and trying to run out the door to find a place to get away, and kicked and screamed when they tried to hold me back. They’d yell at me that I was scaring the other kids, and it only made me angrier because, lady, can’t you see this is scaring me just as much? Can’t you see that this is absolutly humiliating?

    Being a tomboy I always hung out with guys, or tried to. I found the girls boring. After having my hair cut because I got gum in it in second grade there was a new kind of teasing. I started hiding in the library in fifth grade before and after school, and I think the librarians were the only ones that actually tried to help me there, or understood that it was more than just a “problem”, and actually learned about it to help. I remember when I was really into this one series, and when a new book came out they’d call me down and make sure I was the first to get it. After that they started borrowing books from the public library and giving me some to sneak home because nothing there was at my level or kept me interested. (My parents didn’t like fantasy, and that has always been my favorite genre). Thinking back, a few of those likely weren’t age appropriate and had quite a bit of violence.

    It wasn’t until Middle School when I found other kids I actually started getting along with, which was heaven sent since I still had problems with the teachers. There weren’t many, but even two was a start. Then I moved in eighth grade, and had to start over. My self-esteem was at an all time low, I was drugged up on medication to fix more of my “problems”, and acted the class clown to try and get others to notice. It didn’t work out very well, and ended in more issues for me. All I could really think about was why I was different, and why couldn’t anyone accept me without insisting that I had to be like them? Why do they think I’m not trying hard enough? Can’t they see I’m exhausted? I know most of the teachers from then and back to the start (besides my fifth grade one, who was amazing) didn’t even think I’d graduate high school. If I hadn’t met the people I did in high school, they might have been right.

    I think the real step to all of this is that people are going to shove you down and belittle you and try to shut you up no matter what you do. It hurts like nothing else, but I feel like now I’ve gotten stronger, and looking back I realize just how much I had to grow by enduring all of that, and the small spots of happiness seem all the brighter from that time. I’m in College now and hoping to major in Geology to work in the field, and maybe to travel with it. I’ve opened myself to tons of new experiences and have done so much of what others have said I could never do. I have problems still, and I suspect I always will have them. Aspergers isn’t something that vanishes, it’s an ongoing fight and requires tons of adapting. I’ve spent numerous hours searching psychology articles and reading information to understand the world and people around me, as well as to understand myself, and to connect and comprehend by learning. I like to do this, and there are days I’ll spend completely by reading articles online, from topics about writing to personality to politics. I don’t think like others do, and I know they don’t think like I do. But by understanding as much as I can, I can figure out where to go, and how to embrace myself with a life I want in a world of people born with different software. Even if people stay ignorant to me, I won’t go the same way, and instead of looking at my weaknesses and focusing on what all I went through in the past, I’ve begun harnessing my strengths and pushing forwards with the future, and forget what others think. Forget that they look down on me and push aside what I am. Just because they think I have to be some way, doesn’t mean that’s true, and no matter what, all that matters is that we prove them wrong.

    We know who we are, and that’s what matters. Screw anyone who tries to force you to think otherwise or pushes you down, because they’re close minded jerks.

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  19. Hi, I’m just wondering if female Aspies have trouble reading people in the same way male Aspies have. My son has Aspergers (he is 13) and do not “read” people or situations at all. Someone can be crying and he just talks louder, or someone looks angry and he smiles back and says “you’re face looks funny now, it has lines on it” etc. I have a lot of Aspie traits but I read people and situations extremely well, it’s actually one of my problems when it comes to coping in life as I’m always hyper aware of my surroundings. I can’t function at work (or anywhere) due to sensory issues and my awkward personality so I’m looking for answers as to why I’m like this.. Any insights? Is it possible to read people and vibes but still have Aspergers?

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    1. many women with aspergers are empathic and highly-sensitive to others’ energy and feelings. Also, some boys outgrow the non-reading aspect, as was the case with my son who is now 17 and can usually read people. Thanks for the comment.

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    2. I also read people extremely well – I suspect however that it’s a learnt process – and one that is learnt in a very different way from most NTs. Perhaps out of the fear of getting it wrong and a deep need to fit in, many aspie women become extremely adept observers and semi professional psychologists, just to get along socially. maybe the hyper awareness of your surroundings ( I share this) is part of the way that you’ve adapted to get by in the social world.

      I have read somewhere that aspie females can be almost hyperempathic – and I would agree in my case I almost need to disengage with empathy in order to prevent it becoming overwhelming.

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  20. I want to hug the guy that said “I am a male but the reason I comment is that, autistically, I present as a female. I don’t mean I have gender identity issues; I mean I Aspie like a girl. I escaped diagnosis for the same reasons that females escape them and I believe you could describe my autism as female presentation Asperger’s and it would be accurate…” because that’s what I feel and I never before saw someone else say that.

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  21. it took me almost a year to see an autism specialist, after being off work for a year for anxiety and depression. I suggested the diagnosis to my GP, even took in an online test I had filled in. This convinced him to refer me. It took 8 months from referral to see a specialist who confirmed it, but his letter was incredibly smug and condescending to me. he question my relation with my boyfriend that he reffered as “a man that she calls her boyfriend although they do not live together” and my friends ” she has friends who are obviously more acquaintances”.
    And then he discharged because the NHS doesn’t have any resources to spare on us adult HFAs. WE aren’t cute and cuddly.

    I am annoyed at the fact that they merged the former ESD diagnosis in with normal Autism, because this puts a stigma on those of us who can and want to integrate. People thing “autism” and the image they associate it is “kid who won’t speak and makes weird noises” not “accomplished professional who doesn’t like people”.

    We really should have a separate diagnosis, maybe then the NHS will be forced to stop pretending it helps all of us while only directing funds to the LFA.
    Nothing against them, but to be given a bunch of links as “support” is a fucking joke.

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  22. I was diagnosed with autism at 62, Januari last year, after having been in therapy cuz of chronic depression (on and off) for well over 30+ years.
    The depressions themselves started in my early 20s already but, in my day, you had no reason to be depressed, so “get over it and go on, it’ll pass”.
    And you adepted to the world as well as you could, being véry careful nót to be perceived as a weirdo.

    Nóbody of the many psychologists that saw me over the years éver thought of autism, not even when I was in a 4 days a week group-therapy in the early 90s, and I couldn’t join in in excercises that meant you had to hold each others hands. Nobody of those therapists ever asked why I couldn’t, it was just ‘normal’ that I didn’t join in at those times.
    And of course I thought I was too much of a “nothing” to even be bothered with, so I could totally understand why no-one asked.

    And so I muddled on, with and without therapy.

    And if the ‘new’ therapist whom I asked many times if she wouldn’t let me ‘fall’ and who me, for 4 months, promised me that she wouldn’t, hadn’t told me one day, out of the blue, that I would get yet another new therapist, I would STILL have muddled on today.
    But the fact she let me down (due to reorgansations in the institute she worked at) gave me such an acute shock that I banged my fist against my head over and over again. (something I’d never done in the outside world before, but then I couldn’t stop it) … because I couldn’t understand HOW I could’ve been só stupid to really trust someone and let my guard down.
    And thát therapist thought of autism, and I had to do many ‘tests’, they called in my sis and talked with her, I had a long tolk with a psychiatrist ét voila: turned out I was 100% within the autism spectrum.

    And only now, well over 1.5 years later, I’m slowly beginning to understand the reasons of the depressions, the recurring suicidal thoughts I had over the last 3 years (very scay) and more things.
    What a waste of time, what a waste of my life, but hey, at least I’m daring to look forward now.

    I asked them WHY on earth this couldn’t have been detected some 30 years ago already, and they told me therapists never thought of the fact ‘elder’ women could be autistic.
    They so need to learn a lot yet.

    Rant over. 🙂

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  23. Great list! As a school psychologist I identify two or three middle school girls per year who are on the spectrum. And I still have to prove to my skeptical colleagues, and often the girls’ parents, that the girls have ASD. It’s exhausting! But I continue because I know how important it is for girls (I also identify several boys per year) to be understood. My book, Beyond Rain Man, is about raising my son who has Asperger’s. I wrote it to help families get what their kids need and to educate professionals who still don’t understand the breadth of the spectrum. Here’s my 2-minute KQED public radio Perspectives piece about just this: http://ww2.kqed.org/perspectives/2016/04/04/autism-spectrum/ You can find Beyond Rain Man at bookstores and online: wwwbeyondrainman.com

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  24. really enjoyable resource. Thank you for all your work. I am nearly 62 and I have self-assessed myself recently after a radio programme where I heard an IT professor speak about his gift/disability AS (he has a formal diagnosis) – he said it made him a creative thinker, seeking truth and justice, not settling for second best, socially awkward and “if there is an elephant in the room I’ll be the one naming it”!
    That hit home – with a great relief! I then worked through three different online tests, all with the result I ‘should go and see a professional’ – I don’t think so. I have worked throughout my fifties a s and adult and mental health social worker, and it has not diminished my life-long skepticism when it comes to the medical model – currently I am reading Silberman’s book Neurotribes and I think that is the kind of ‘normalisation’ I’d like to contribute to: I have learned a lot from survivors of psychiatric treatment who have set up the Hearing Voices Network (I don’t hear voices), I like the thoroughly person-centred approach they are advocating and the saying ‘we are all on a spectrum of human experience’. Nevertheless, the not-quite diagnosis meant a relief for me as I came to understand lifelong difficulties with social skills and making myself understood much better while if also gave me a sense of self-compassion I had lacked – because this is it, this is who I am. So, life begins at 62. 🙂 Hope to share more and will be back 🙂

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  25. the comment quoting the buddhist psychologist had me laugh out loud – I see a connection between Aspie quirkiness and the dry wit with which Buddhist guys express riddles of life… 🙂 brilliant

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  26. a catholic nun acting as buddhist meditation teacher, almost thirty years ago, said to me ‘you don’t seem very closed off’. Knowing what I know now, I’d like to answer ‘that’s because I have a gap in my personality’. 🙂

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  27. Pingback: Autism: Lesser Known “Facts” – Everyday Aspie
  28. Pingback: Autism Spectrum Diagnosis, Helpful Links, & New Video! – Everyday Aspie

  31. Reblogged this on The Misadventures of Mama Pineapple and commented:
    As a late-diagnosed autistic woman (ASD/ASC, synonymous with Aspergers), and one whose traits were described by my clinical psychologist as ‘atypical’, I actually feel very lucky to have been diagnosed at all. Lucky that I had both a GP and assessor who ‘got it’. I believe there are many autistic women and girls who present as I do.

    Reading many of these comments breaks my heart. And some of the comments from professionals beggar belief.

    I urge others to share this far and wide.

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  32. I am curious why it is so important to ADULTS to have a specific diagnosis, since (as far as I know) there are few to no support services available for people over 18. I am self-diagnosed. The only reason I can come up with is that many of the commenters above are from the UK, where a much better support system for autistics of all ages seems to exist. If I am mistaken about this, please enlighten me. Thanks…

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    2. Martha Goff, Asperger’s explains my history, personality, struggles, successes. It also explains what people can expect when they’re around me. The “paperwork” just lets me know that I’m not delusional or “self-absorbed”– and that I can officially cut myself some slack for having a brain whose wiring is different than most brains in this world. You’re right, though; there are few resources in the US for adults with Asperger’s. But the resource available to me here in North Carolina (for group meetings of like-brained people, social gatherings, classes) won’t even see you unless you have an official diagnosis. I’m not sure I’d even go to those gatherings; I have enough friends who accept my friendship such as I can give it so I get most of my needs met (and they do, too). I have the support of my husband. I WOULD like for him to be able to find some support, though. It ain’t easy living with me.

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  34. I, like so many others, was researching autism while trying to seek a diagnosis for my daughter. I was fortunate enough to stumble across Tania Marshalls work and in particular her anecdotal check list for female Aspergers. It’s quite a long and comprehensive list and as I read it I found myself ticking nearly everything. By the end I was sobbing as my whole life suddenly made sense and the sheer relief of that was overwhelming. I went to my GP to ask about a diagnosis and got the usual sceptical response that is normal and was told to just find myself a psychologist and I’d have to pay for it myself. Fortunately in Australia you don’t need a GP referal to see a psychologist so as Tania Marshall is only 3 hours from me I booked myself in to see her. She diagnosed me straight away (and my mother as well!) my strategy when telling people (which is quite selective) is after their initial reaction of “NOOO you can’t possibly be autistic!” Is to proceed to give them a full and comprehensive lecture about female autism, how it differs from male autism and why it is routinely missed. (The lecture itself should be a dead give away!!) I have since had my adult daughter diagnosed and am in the process of having my 8yr old daughter diagnosed. The comment on here by a gentleman who said ‘he aspies like a girl’ has been a light bulb for me about my 18 yr old son. He never showed any social issues growing up but now seems to have quite a lot of traits and we are very similar. The best part about having been diagnosed is the help it has given to so many of my friends. It turns out that the women in my world are pretty much all on the spectrum. My theory is as someone else said ‘birds of a feather’. I have naturally gravitated to other women who think the same way I do. To be able to tell them that I have a diagnosis and this is why has helped so many of them have that same relief, yes there are others out there like me. I love knowing I’m an aspie because my world is now complete, it makes sense and I now am able to be very kind and accomodating to myself and it has made life good. It is so disheartening that all over the world women are still being disregarded about their own knowledge of themselves but I encourage all the women out there on the spectrum that even though it may be slow it will change and our voices will be heard just keep plugging away.

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  36. I was diagnosed with depression way back in 2000. By 2001 it was clear that it wasn’t depression. In 2013 I found out that it was a possibility and asked my psychiatrist who said yes you are definitely on the spectrum but I have to discharge you now, just this year 2016 they agree that I do not have depression. Emotional dysregulation related to aspergers. In the time its taken I have lost my job and I’m now finding it difficult to get going again, I wish I had known sooner.

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  37. Pingback: Blocked! Another big reason #autistic folks so often get stuck – Under Your Radar

  38. Me: “I think I have autism”
    Psychiatrist: “I don’t see that.”
    Me: *hands list that is around 13 pages long of reasons I think I am autistic, from now and childhood.*
    Psychiatrist: “oh. you have autistic characteristics but I have to look at this more.”

    Next Appointment:
    Psychiatrist: “I never would have saw or suspected this.”

    -> I am now scheduled for a nueropsych evaluation and he said “I think it is very unlikely that you won’t come back with an ASD Diagnosis”

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    2. Your experience is exactly why I wrote Beyond Rain Man: What One Psychologist Learned Raising a Son on the Autism Spectrum. Will you please recommend it to the psychologist and other professionals? One shouldn’t need a neuropsych evaluation in order to Dx ASD. I have seen many neuropsych reports for kids I work with, which have missed the Dx completely. If the professional is knowledgeable about ASD, a good history-taking and interview can suffice. Hopefully the person you see will be helpful to you. Good luck!

      https://www.amazon.com/Beyond-Rain-Man-Psychologist-Spectrum/dp/0997040009/ref=sr_1_1?ie=UTF8&qid=1459124694&sr=8-1&keywords=beyond+rain+man

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  39. Pingback: Deficient vs Different | TheChandChronicles

  41. I was diagnosed at 22. I have an autistic older brother. In grade school, I had a friend who was a girl on the spectrum. When the two of us went to church together, my mom talked to me about autism. She said girls grew out of “it” when they became teenagers. Then, 12-13 years later, I was diagnosed. First, my GP added to my record that I had “Other Pervasive Developmental Disorders”. She suggested I get tested (that was; I have neither insurance nor money). Then my mom suggested I try, because I could get financial aid for disability. We found someone who was very reluctant, but did diagnose me. I was no longer a teenager, and I had not outgrown “it”. Because we don’t. We learn how to mimic and cope. And, yeah. That’s my story.

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  42. I recently went to an appointment with the adult autism clinic in Edmonton, Alberta Canada. I thought my entire life I had a learning disability but I had too many signs from my childhood that my mother told me I didn’t start talking until I was around 3 years old and I would often jave terrible melt downs and she had to train me to give people eye contact. After going to the appointment I spent 30 minutes with the language pathologist and 30 minutes with the psychiatrist. Even though I was 22 the doctor told me I was not autistic because I gave him eye contact immediately and I had good social skills. They sent me to another psychologist to test my academics and they tested me for a learning disability. I spent 20 minutes with the psychologist and 2 1/2 with the academic assessor. After she concluded 3 learning disabilities, she told my mother that all of my social issues (of not being able to understand sarcasm and jikes) was simply just anxiety, and I should get tested gor an anxiety disorder. If all of my problems were just anxiety, I could have done a google search for that. I didn’t need to wait 9 months for a specialized clinic. I know I am on the spectrum, there is too many signs, and why is that doctors think they can diagnose you within 1 hour appointment about your entire life?. I felt at the appointments the doctors didn’t take me seriously and I am thinking of getting a second opinion because I don’t believe it’s just anxiety. At the end of the day, people are the experts on their own body. Doctors have gotten diagnosis wrong so many times so just take a diagnosis as a professional opinion and not fact. There is still so much we don’t know about autism that mental health professionals think there experts about.

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    2. I went to a phd psychologist that specializes in “Aspergers, adhd and learning disabilities” yesterday. I got her name in response from an e-mail I sent to the state (OH) autism society. When I made the appt I told her receptionist that I wanted to be evaluated for ASD. So, when I came for the 1st appt, she was immediately skeptical – feeling I had already self-diagnosed, I guess. Every time I said something, she’d shake her head. “Oh, you’re definitely ADHD.” At the end of the hour, she stated that she is pretty certain I do not have ASD. She proceeds to say to me, “I can tell if someone has ASD within 5-minutes.” Immediately, she lost all credibility in my eyes. I have listened to, watched and read Tony Attwood (who, when mentioned by me, she stated she really respected his work) and his theory of masking, in females. I am 45-years-old. In 5-minutes, this lady determined 40+ years of masking couldn’t fool her. I’ve taken every test that exists online and I am always within the ASD results range. I am now learning everything there is to know about autism and DNA. There was a new study (Denmark, I believe) published in February with very promising results as far as genetic identification of ASD. The funny thing – you have to be diagnosed by a doctor to order the DNA tests that are available. I’m beginning to believe that this is a situation similar to psychopathy, within the US. If a therapist notices a patient may be a psychopath, they are not allowed to diagnose it if A. the person is under 18 or B. there is no sign of harm in the past or that is imminent in the therapist’s eyes. Could this be the way the US is keeping ASD numbers from overwhelming them – as far as disability and benefits for these people go? I don’t want any of that. I just want to feel better about why I am who I am.

      -Disappointed

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  43. Pingback: Stop excluding women and girls from conversations about autism – Latest Autism News

  44. Same boat. Same stories …
    For myself AND my two young teen daughters … AND my <10 yr old son …
    NO to little help, and the "help" we did get was actually more trouble & stress than it was ever worth.
    Don't even get me started on the whole system! = from the schools, the health agencies, the health insurance, the counseling & medication clinics.
    I did everything I was told to do, by people I trusted, and was later blamed to be the "root of all the problems", because I kept fighting to get my children help.
    Sooooo many things written in my children's (and my own) medical records, that are no where even close to the actual truth, and all to cover "the systems' butts" and point blame onto me/us.
    I am being forced to watch as my oldest daughter (def. Aspie) is about to turn 18, after slowly falling through a huge gray hole of a pit called "our education system", as she will quit out of high school, since there's no way she can possibly do/complete grade level work to get credits enough to ever finish the graduation path, and the schools refuse to put her on certificate of completion path = as I have told them they needed to do, repeatedly, all along, for all these years!!! Mostly, it's because she is a girl. I've had many come to me & tell me that children with nearly identical METs, that were all BOYS, got into the non-graduation path classes, easily, and my girl is not the only girl they have turned away,, …
    All three went into the school system by the age of TWO, like I was told to do. I probably should have opted to homeschool. They would have at least been happier & not traumatized by the near 2 decades of constant stress, abuse, bullying and neglect that the regular education system inflicted upon them/our family. Honestly, now that I look back, I just see my kids being used as hash marks on some school funding form, for the schools we went to, to get money for our kids being there. The only time my kids ever really mattered to them, was on Count Day*. (*That determines the state's funding for the schools.) … All before the younger daughter was 6yr old & had already been stabbed in the back, several times, with blue ball point pens hard enough to leave permanent tattoo marks, her entire pony tail was cut off, she was put in the corner instead of being included almost daily, she was disciplined for standing up for herself when she was being bullied & picked on endlessly & without mercy, and she was locked in a tiny room without windows or furniture because she cried from confusion from not being able to read aloud "properly", etc, etc. The youngest (son) was traumatized by the schools' version of "potty training" (that we were blamed for, even though we had successfully potty trained him during the summer months, 5 times over), he was allowed to run into this city's 2nd busiest 5 lane road because they refused to prevent him from running off, they left him on the playground for over 6 HOURS straight because he would not do as he was told to come inside on his own & they would not help assist him or guide him, he was punished for being overstimulated in a loud & busy cafeteria, he was punished for sitting in line to go to the bathroom that he was traumatized to go into (by them) to begin with, etc, etc … Yet, the children that stomped on his chest during nap time, struck him repeatedly with metal & plastic kiddie chairs, and threw numerous BIG wooden building blocks (10" long pieces of 2"by4"s) at him = those kids were "just fine", were not scolded, not punished & the school didn't even talk to their parent about it, let alone kick them out of the classes. The last straw was my son's main bully leaping on the back of another child, that he was abusing, and tried to stab that poor boy's eye out with a pencil, as the victim was trying to ask for help from a teacher, right in front of me, and the teachers hardly even reacted! When I refused to take him back for that last week of school (PER-SCHOOL), they threatened to call CPS & charge me with truancy. Yet, that bully was STILL IN CLASS EVERY DAY! … etc. etc. etc. The list goes on & on. …
    We HAD TO put them all in online school … to protect them from the abuse & neglect they received in regular schools.
    I've had to stop all behavioral meds (that I would have rathered they never took at all, but we would have been accused of medical neglect if I didn't do what the doctors said to do) … to protect them from the abuse and neglect they/we received from their medical & psych clinics … as they have started to blame us (the parents, especially me) "for trying too hard to get the children any help" = directly blaming us for somehow "causing all this mess", as we've tried to get help & protect our children FROM THEM. …
    YEARS of medical & psych documentation, that is not even close to truthful or entirely false is STILL sitting in our childrens' records (and my own), and all they do with it is to use it AGAINST US, when it was them all along that didn't help or did wrong. I can't find anyone to help me get the records cleaned up, straightened up or amended in any way.
    All the stress, over these last 17 years, from all of this mess, has caused me to have 3 heart attacks (first one by my mid 30's), and the list of ailments go on & on, just for ME … Soc Security turned us all down. The County Health Gateway turned us all down, even after me fighting to get their help for over 1.5 decades = all to no avail. And without their help, no one else would help us. Health Insurance said "the schools need to supply those services". The schools said "that's not our job to supply those services." … We were FORCED to go from one clinic to another, to ATTEMPT to get any help, at all, only to be turned away, over & over = then, later, that long list was USED AGAINST US = saying we "were shopping for doctors & meds", when that is soooo totally NOT what we were doing. But we can't fix the records. We can't set any of it right. …
    We were FORCED TO STOP ASKING FOR HELP.
    We aren't low enough functioning to get help and we are barely high enough functioning to barely get by.
    "They look fine. Why do they act the way they do? It's just behavioral. They just need to listen better & do as they are told. They need to change their attitude. Why can't they just be more like the other girls/kids? There's obviously nothing wrong with your kids. Why do you try so hard to get them help, they obviously don't need it. She can do the classwork/homework/reading, I know she can. Other girls her age can do it, so she can too. Stop washing her hair. She's old enough to do it on her own & she'll start doing it on her own, soon enough. Why does she look messy all the time? Doesn't she wash her own hair or bathe?" (*The younger daughter, more affected by her ASD & Sensory Issues, can not stand to get water on her head or in her face. She swears she feels like she is drowning if it ever touches her face/head. She washes her hands almost endlessly, because she NEEDS them clean! But, she can NOT bring herself to wash her own face. Also, she completely lacks the manual-visual comprehension & coordination to manually manipulate her own hair, with soap & water, all together. We've tried everything, mirrors, teaching, videos, story strips, lists, numbered bottles, trips to the hair salon to watch others getting it done, etc. She just simply can NOT physically & mentally do it, on her own, even IF she can get past her water-in-her-face FEAR, in the first place.*) …
    We still need help, but don't dare to ask for it anymore, because doing so, has literally destroyed what could have been of our lives. … Now that my life has been cut short-er (stress induced heart attacks & damage = CHF), all I can see is, after their father & I are gone, is my oldest daughter will likely live off of bagging groceries, for the rest of her life, if she's lucky. My middle daughter will likely die in the gutter somewhere because she won't even be able to qualify for a group home & she can't work to support herself = heck, she can barely speak, she can't even wash her own hair or face on her own, etc, etc. My son MIGHT fare a bit better, although I am just hoping for a nighttime shelf stocking job at a local grocery store, to help minimize the trauma of having to talk to/deal with the public on a regular basis.
    I … We now live in constant fear of someone knocking on my door to take my children away, or that fourth heart attack being my last.
    It wasn't supposed to be like this.
    None of this was supposed to happen … but it has.
    I WILL keep trying, as much as I can, ON MY/OUR OWN, because asking for help has ONLY brought us more pain & problems.
    I will NOT give up.
    All I can do is HOPE that the kids don't give up either, after I am gone.

    I don't even dare think of a diagnoses, or even going back to any psych clinic, FOR ANYTHING … it's too much RISK … It's just too DANGEROUS.
    Heck, just going to the doctor for yearly well-child visits, and vaccines, is way too darned stressful & major causes of FEAR & STRIFE … for the kids, and especially for me.
    I can barely even get to the grocery store, except late at night when their father is home from work & the kids are asleep, because I can NOT take the kids with me, anymore. I can not run after the youngest, if he bolts again. He's too big to fit in the cart, and I can not lift him anymore, anyways. Their father works a few jobs to help support all of us. He helps whenever he can. We are so lucky are are all still together! … Thank goodness for online shopping!!! =)!!

    Sorry for novel-of-a-post = it's really FOUR people shoved into one post. X}

    For all of you that have gotten diagnosed and gotten help, I am soooo happy for you!!!!
    For all of you that haven't & are still fighting to, I feel for you … soooo much!!!
    Everyone, hang in there!
    Huge eHugs to You All!!! <3!

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  45. My 36 y/o daughter and I are so frustrated! It a shame nobody recognizes that an adult female highly intelligent can have be an aspie ! Yes she has 2 degrees yes she has 2 children no she can’t handle certain situations she is exhausted all the time from trying to be “normal” I knew as a child she was very intelligent and a lil hyper as a baby she didn’t sleep disintegrated want food touching Couldn’t wear certain types of clothing but at that time in life this DX wasn’t heard of . She was adhd. Bipolar depression or so they said at school . In high school she got in trouble for correcting the teachers made straight A s. But now as an adult it’s difficult for her to hold a job or a relationship she has diagnosed herself they reading and research. She told me “ mama I know something about me is different so she was on a mission to find out WHY.
    When she said “ I think I have autism “ of course I was like huh? Because she doesn’t fit the “autism type” but as she shared her research with me I said baby I think you are right. But she can’t find professional help . Nobody sees adult woman and rarely females at all. I’d you know if anyone in the
    Mississippi area that are willing to help my daughter please let me know. TIA 💜

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