The darker side of the diagnostic process for Women with Autism

Vicki Cooper

Older, undiagnosed, women, frequently find that their families / friends have fallen into the habit of viewing their differences in particularly negative and unflattering ways that detract from their ability to view themselves as potentially Autistic.

They often experience the indignity of hearing family members, both young and old, refer to them as “lazy”, “weird”, “odd’, “anti-social”, “hard to get along with”, “overly sensitive”, “moody” and “unreasonable” people.

The impacts of being viewed in this way, by the very people who are meant to love and accept you, cannot be discounted.

Especially since these impacts often serve only to further confuse those women who already sense that are ‘different’ from others, yet hold no explanation as to why or how this should be so.

Being continuously discredited in such a way by their family, not only undermines an undiagnosed Autistic woman’s self-confidence, but it also makes it harder for her to believe that there may be a legitimate reason for her experience of ‘difference’.

As a result, many undiagnosed women describe the sensation of ‘teetering of the edge” of self-awareness and acceptance, yet, still never quite being able to commit fully to the belief that they may be different for any reasons, other than the ever burgeoning list of negatives they’ve become accustomed to hearing.

For this reason, many undiagnosed women, quite literally feel that they require a formal diagnosis in order for their family and friends to  accept that their “odd” behaviors are the result of sensory and processing differences and not the result of a wilfully lazy, or ignorant mind.

And therein lies the rub.

When a woman who’s not only perceived herself as being different in some unknown, unnamed kind of way her entire life, but has also received multiple negative messages from those around her for those differences, becomes brave enough to ask to be assessed for Autism, she is often confronted with a yet another litany of negative messages.

Even the term “seeking a diagnosis” which is very similar to another term also applied to women, “attention seeking”, makes it sound as if women are going out of their ways to “seek” a diagnosis.

Yet often the truth of the matter is that women are not doing this.

They are seeking answers and they do so usually, only after months, or even years of contemplation and research.

Most women are therefore aware of the fact that they may be Autistic long before they contact a psychologist.

Yet despite their high levels of self-awareness and Autism related knowledge, they find that form the very moment they sit in front of a psychologist and state that they “feel different to everyone else,” they are confronted with a pre-ordained set of red flags that go up in a psychologists mind, upon hearing those very words.

To this end, most psychologists will settle into the task, not of assessing these women for Autism, but of looking for any signs that the women concerned may be mentally ill, delusional, attention seekers.

Now let’s just stop and consider that last sentence for a minute and ask ourselves why it should be that any woman, upon requesting an assessment for Autism, should first find herself in the predicament of having to address a psychologists immediate concerns that she may be mentally ill, before any Autism assessment can take place.

There seems to be something wrong with a diagnostic process in which the first step serves to scare, intimidate or cause doubt in the minds of women, due to the fact that it often reinforces all of the negative ideations they’ve grow accustomed to hearing about themselves from their families.

For this reason, some women will become consumed with either fear or self-doubt and choose to end the diagnostic process before it’s even begun.

Those who continue on, do so under the weight of the understanding that, regardless of whether or not they are found to have Autism, they will most likely to be labelled with something, simply by virtue of the fact that they are continuing on within a diagnostic process that is designed to find something amiss.

The practice of conducting Autism assessments in such a manner may also explain why there are currently so many different, co-occurring psychological conditions, associated with Autism.

If we note the precarious position that any woman is placed in when “seeking” an Autism assessment, and add this to the already well-established past propensity of psychologists to either miss of dismiss, the signs and symptoms of Autism in women, we can begin to see why many formally undiagnosed Autistic women view the diagnostic process as being far more fraught with potential hazards than with potential answers.

Hence, undiagnosed Autistic women, often find themselves situated between a rock and a hard place, as they often urgently require the validity of a diagnosis in order for their family and friends to take their concerns, feelings and experiences seriously.

Yet, in order to attain that diagnosis, they must willingly submit themselves to the critical gaze of a psychologist, whose first point of call is to assess, not whether they have Autism, but whether or not they are mentally ill.

Is this fair?

Definitely not.

Yet this is the way it is for adults, especially women, who wish to be assessed for Autism.

And unfortunately it gets worse.

Within the diagnostic process the psychologist holds all of the power.

Psychologists are human beings, and just like the rest of us; they go about their days complete with their own sets of values, beliefs, likes and dislikes, skills and flaws.

So whilst they may be certified to practice, that certification in and of itself, holds no guarantee what so ever, as to whether or not they are up to date with current studies regarding female Autism, or even whether or not they are ethical human beings.

The idea of trusting a complete stranger becomes even more of an issue for women wishing to be assessed for Autism as they too often find themselves in the un-enviable position of being forced to entrust their most vulnerable selves to a person of whom they hold no understanding or awareness, beyond the context of office walls.

This is no mean feat.

Especially considering that clients (female and male) do not find out whether or not that trust has been misplaced until after all of the assessments have been carried out.

It is only at the end of the diagnostic process, once all the fees have been charged and the bills paid, that a woman may discover whether or not her diagnostic trust has been well placed.

If it has been well placed, then a diagnosis of Autism may be given.

Should it transpire that a diagnosis of Autism be considered unwarranted, then there will be no further diagnostic decision made about any woman, without the express consent of the woman concerned.

If a woman’s trust has been misplaced, then the ramifications and consequences of being misdiagnosed with a condition that not only exasperates her difficulties, but further encourages others to dismiss her, may prove disastrous.

And still, even in some situations where a diagnosis of Autism is given, a woman may still find herself in the situation of having inappropriate and/or highly personal information about herself, divulged to third parties without their consent, due to an overall lack of ethical practice on the part of the psychologist.

The diagnostic process may not be for everyone, but for those who need or want to pursue it, it’s best to go into it with eyes wide open.

Completely aware that despite the many improvements that have occurred regarding  our understandings of Women with Autism, there are never, ever, any guarantees.

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20 thoughts on “The darker side of the diagnostic process for Women with Autism

  1. Thought-provoking piece.

    I was diagnosed a few months ago at age 29 (now 30). My family was always supportive. It’s the workplace, and the rest of the social world, that’s been the big hurdle for me.

    The diagnostic process wasn’t so bad. The only thing that stood out to me was the shrink insisted it had to have been obvious when I was growing up. It wasn’t. She then reasoned that was because Asperger Syndrome wasn’t widely understood in those days. But is that necessarily the reason? I didn’t struggle in school; I loved most academics. I was socially a little “off” at times, but not a trouble-maker or anything.

    And contrary to the stereotype, I never really had a problem with “big picture” or imaginative thinking. I found something I wrote in fifth grade; not only is it both highly detailed and coherent in the gestalt, it’s extremely imaginative. It’s an “autobiography” of an imaginary basketball player I had created and was developing at the time.

    Most of my deficits seem to revolve around executive function and what people always say is “socially appropriate” behavior, or reading “social cues.” These are the things I get criticized for the most. Being tactless, having a hard time juggling many things at once in my environment, transitioning decisively from one thing to another. Life was so much easier in a passive classroom. It’s grabbing the bull by the horns, dealing with and navigating through my environment, and learning to interact tactfully and “normally” with others, that’s been the struggle.

    1. I believe Im Autistic and struggle socially altogether. 32 can’t maintain a friendship. Ridiculed for my bizarre thinking that I think is gentle and kind and I overreact if I think anyone I love is hurt. I struggled academic in high school because it was too fast, I got the work just couldn’t keep up

  2. Oh my goodness, this is so important.

    This was almost exactly the position I was in…I needed the professional backup and validation because everything I’d ever been told about myself were that my needs were wrong and my perceptions were wrong. Any attempted explanation on my part only reinforced what other people had already decided about why I was the way I was.

    I was just entitled, spoiled, uncaring, rude, selfish, oversensitive, making a big deal out of nothing, being a baby, making excuses.

    But getting one meant breaking my vow of never, ever stepping into a mental health professional’s office ever again. Because my last actual diagnosis before I got an Asperger’s diagnosis was “perfectionist control freak whose standards for humanity are too high and who just doesn’t want to think that you’re not really different from everyone else.”

    I realized I was probably on the spectrum for about 6 years before I dared do anything about it, for all the reasons you mention and more. I just didn’t have a good record of getting doctors to take me seriously and look at the facts.

    Eventually, the feeling pulled apart and doublethink was just too much, though. Thankfully I eventually landed with a psychiatrist who was insightful and relatively well-versed in the presentation of Asperger’s/autism in adults, and I wound up being thankful that I had gone through with seeking a professional opinion.

  3. Secondly, I’d say that the consideration being whether we have some other mental illness instead of autism is doubly unfair, as autistic women suffer such high rates of depression, anxiety, PTSD, and OCD…in part *due to* the stresses of being autistic in a hostile world. Those things aren’t mutually exclusive with autism, they’re co-occurring at high rates…but how many women hear “you’re not autistic, you just have social anxiety?” When one of those things is a hallmark of the other, not an exclusionary factor.

    1. I’ve been diagnosed PTSD, depression, anxiety, OCD. I have thought for about 12months I’m autistic looking back on my life and the life of my ASD, ASPERGES son.

  4. My step mother, arbiter of the family “reality,” tarred me with her own willful propaganda as being a lazy grifter, deserving of all my ill fortune and more. How I struggled daily to avoid homelessness! My brother and I, seperately discovered our autistic status only recently. Aspbergers and toxic mixed families are a special hell I wouldn’t want to wish on anybody.

    1. I’ve been oddly tired my whole life since as young as I can remember. Always called lazy and getting tests and told to eat bananas and vitamins for energy and always it’. Diagnosed depression and anxiety, I believe it’s more

  5. I’m so glad to see this post . I’m too tired, and it’s too noisy outside for me to order my thoughts to respond more fully. Just wanted to say thankyou, and I’ll watch for any responses with interest

  6. This is wonderful! I had to make hundreds of phone calls and dozens of emails. Every phone call was its own obstacle. After 8 months i finally have some answers… still waiting to read it in black and white (haven’t gotten the bill for 4 months now??) I went for the verbal results but there is no way for me to move forward until they spell it out!

  7. When I was in the process of having my second son evaluated (I have three children on the spectrum) I mentioned to one of the evaluators that I thought I might be on the spectrum and he basically said that it would be impossible to determine because I was “too self-aware.” I thought, “Heck, what do you suppose happens when you’ve been researching autism for the past 12 years due to having a child with a diagnosis (my oldest son) and you keep saying ‘Ah-hah! Here I am again!’ ? Of COURSE I’m self-aware!!” I was hoping for them to give me a recommendation for someone who evaluates adults, but no luck. I ended up going to a psychologist who specializes in autism and a few other issues with children and adolescents, who was working with my daughters. I asked if she knew someone who evaluated adults and she said that she didn’t, but that she was willing to evaluate me. That worked out well. It was lovely to talk with someone who 1) recognized that it can look different in women, and 2) didn’t minimize my challenges simply because I have a husband and children.

  8. Attention seeking and mental illness are not the same thing. In fact, women with non-psychotic mental illnesses are sadly treated exactly like women with aspergers – if they seek a diagnosis and help they are accused of attention seeking and of having a personality disorder, not a mental illness. It’s even worse for women who suffer from a mental illness AND aspergers as they are even more likely to be told they are just attention seeking and personality disordered when seeking formal diagnosis and help for their illness and aspergers.

    1. Yes I gave up. I’m now PTSD, OCD, DEPRESSION, ANXIETY, PERSONALITY DISORDER. Yet none of their medication helps accept the one I use to get to sleep

    2. I can relate to that itaketoflight. I actually had a diagnosis of AS from an expert whilst my counsellor constantly told me I had a personality order not autism and told me I wasn’t autistic for 7 years that she treated me, I cannot believe it. This invalidated me completely and frustrated the hell out of me, I now think I have schizophrenia as well probably as a result of not getting the right type of help and feeling worse as a result. I asked for an assessment for schizophrenia and got 1 hour with a non psychiatrist. She said she was happy I had had all the help I needed and didn’t have schizophrenia. I spend most of my time believing I am someone else and relating very poorly to people. I have few friends and I think my own family don’t like me. I have a lot of violent thoughts and no-one will help me. The NHS is free in the UK so that is why they have budget controls. But I am left high and dry. I will have to finance my own therapy on a very low wage just because they don’t do AS counselling for adults in most of the country. They only care about autistic children.

  9. Have tried to get my diagnosis for years. About five years ago I wen to an “expert” who was fascinated with my tales of nontraditional relationship story, did not give me any assessment test, asked me to tell a story and then told me that I can’t be autistic because i think in Narrative. Yeah,m I’m not an engineer and I’m not Temple Grandin. But she had this notion that I was probably bipolar (I have zero symptoms of BiPolar Disorder as my research indicates, or Borderline, also, noi symptoms of Borderline Personality Disorder.
    Just because everyone I’ve talked to in the Autism Advocacy Community has accepted me as being as autistic as they are, this MFCC Candidate decided I don’t fit the mold. Um. I do fit the mold. As did my mother. As did my father. As does my brother who was diagnosed without asking to be.
    I’ve discussed this at length with my Primary Care Physician and she felt “unqualified” to give me a formal diagnosis. However I just had to ask for a letter excusing me from Jury Duty because I have chronic Cyctitis and can’t possibly sit on a jury without having to go to the bathroom every ten minutes; my doctor wrote me my letter and cited Autism as my disability.
    So now I have a piece of paper signed by a physician that says I am Autistic, which was accepted by the System.
    Am I diagnosed now? I’m in process of applying for Social Security due to being nearly 60 and nearly unable to do what little work I have and can’t get the appropriate kind of therapy and this piece of paper might make or break it for me.

  10. I hope this reaches far and wide! I had this trouble in the beginning (first doctor had no clue what autism looked like in females, let alone in adults). Thankfully I have a very supportive husband who believes in me and didn’t allow me to give up! The feelings of mistrust can set you back so far. The second doctor I saw, immediately (after proper testing of course) diagnosed me with Asperger’s and general anxiety disorder. Thanks for posting this!

  11. I just went through a pre-assessment process through the NHS where I was told by the psychologist and psychiatrist that I don’t need to be assessed because I can’t have Asperger’s or Autism because though I do have some traits, I didn’t have any developmental delays as a baby and because I was able to successfully work as a nurse for 10 years. Therefore, my problems must be due to a low self-esteem.

    I am now seeking a diagnosis privately.

  12. Was diagnosed with Autism at age 15. My diagnosis was overturned by an older doctor (this is 1995) when my mother was told “only boys can have Asperger’s.” Avoid mental health facilities. These places will almost always misdiagnose you if you are female with Autism. Go to a specialty clinic and request clinical testing. Do not ask your PC doctor. They are NOT QUALIFIED to diagnose Autism. No matter what they tell you (and they will almost always blow you off if you are female.. Especially on state insurance), if you feel you have symptoms congruent with Autism it is highly advisable you seek education on the matter and then clinical diagnosis. Read reviews of places you are considering. They are NOT all made equal. Consult people who work locally with Autism and find out where they were tested. I spent from age 16 to age 26 on the street (until I got section 8) because I did not have the life skills required to help myself, even though my IQ tests high. I received testing again again at age 33 and it was confirmed I have Autism. My GAF score (roughly how well I am able to take care of myself) is currently a 43. I now have Daily Life Skills four days a week, a case manager who helps me with other things (including finding a doctor who is better than 3 stars.. damn near impossible in the State of Maine) and a therapist who is helping me with PTSD, ADHD and Autism. All confirmed with standardized testing. You may be able to “mimick” through the questions, however there are processing tests which are much harder to do that with. Testers need to test with a hightened awareness of women’s ability to hide symptoms. Do not be discouraged. Even if you are functioning on a level that disqualifies you for a diagnosis on the DSM-V Axis, the available online information, support groups and other local supports can offer info that can at least arm you with valuable personal insight. One huge issue that gets over looked with us is called Mind Blindness or Theory of Mind. Lots of wonderful videos on this. This is a common cause for many social challenges for us. Another helpful hint is anxiety and fear associated with Autism. Bring down anxiety and fear and functioning increases. Raise anxiety and fear and functioning decreases. I believe Behavioral Health Professionals actually work backwards and against productivity. They try to work on the behavior first and than other things. This simly increases anxiety for us and exasperates the issue. So getting help with anxiety associated with spectrum issues will help a great deal. Ever catch your self getting snappy or agitated for seemingly no reason? Or at least no reason that makes sense to those around you? Keep ear plugs and sunglasses close buy. It is more than half the time sensory over load. Bring down or “filter” how many colors, movements, sounds, tactile feelings are coming in and watch your agitation come down with it. Pretty simple. No drugs needed. Some people hyper focus to bring down sensory overload and get angry when interrupted because this allows what you are trying to manage to become over whelming again. Most will have an art, type of music or web search or study or book that allows them to focus on one thing and block everything else out. We do this to cope. Most of us don’t know WHY we are doing it or WHY we get agitated when interrupted. Self awareness is in fact, an issue that is part of ASDs. The inability to recognize what’s different is a huge problem for us. Studying can lead to helpful insight, self awareness, confidence and empowerment. Good luck. I wish I could help every one of you. I know what you are going through and it makes my heart ache.

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