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:
- 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.
- 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.
- I was told it’s a male disorder and its environmentally caused… I wanted to punch him… He knew my daughter was already diagnosed.
- 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…
- I had a good experience with the guy who diagnosed me, but other docs have been iffy.
- It can be so frustrating to be told that you aren’t something that in your core, you know you are.
- “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.”
- 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.
- ‘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?’
- 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.
- 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.”
- “You can’t have Aspergers but maybe another developmental disorder.”
- …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.
- 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…
- …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.
- “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.
- I have not been ‘officially’ diagnosed, and after seeing how my son was treated by the drs…am glad I never was…
- I was told it was because I had a traumatic childhood, and Autism is rare.
- 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.”
- My doctor laughed in my face and told me that people with Aspergers don’t get married, have children or hold a job.
- “You have gotten this far in life why bother?” was the question I was asked.
- She said, “You don’t want that diagnosis following you around, they could take your children.”
- “You adjust too well in everyday life situations. What do you need a formal diagnosis for? You don’t need professional help.”
- 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.
- 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??”
- “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?”
- 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…
- “You’re much too social!”
- “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.
- “Well, you seem to have done well for yourself, so you’re fine.”
- 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.
- 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.
- Mine said I was textbook. No problem. Not sure if that’s a good thing or a bad thing…
- 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.”
- 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…
- 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.
- 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.
- 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.
- 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.
- …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.
- 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.
- “Yeah, but you’re obviously high functioning.”
- 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…
- 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…
- 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.
- “Girls and adults can not have autism” — multiple Drs called…
- 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.
- 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.
- 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”.
- “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.
- “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!”
- 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…
- 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.
- …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…
- I make eye contact (I don’t, I look at mouths), I’m psychotic, I’m not ‘that’ bad, etc.
- “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.
- 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.
- “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.
- 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.
- 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.
- 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.
- 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…
- 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…
- For my daughter we got “she makes eye contact and desires friends so she can’t be on the spectrum”
- 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…
- 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!)
- 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…
- 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.
- 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.
- A psychiatrist told me: ‘You can’t be autistic because you felt sad when your Granny died…’
- 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.
- 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.
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.
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.)