Autism – What will I gain from being diagnosed later in life? It won’t change anything for me, so why should I bother?”

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People often ask me: “What will I gain from being diagnosed later in life? It won’t change anything for me, so why should I bother?”

Well, my answer as to whether or not anyone should “bother” to get diagnosed is this.

Firstly, on a purely personal level, it depends entirely on what your personal circumstances are and what the biggest issues are that you’re facing at any given point in time.

If you’re a person who’s main problem is that you’re always feeling misunderstood or blamed by your family member for being the way that you are, then perhaps receiving a formal diagnosis may help your family members to comprehend and accept that some of the onus for understanding both who and how you are, falls upon them to make more of an effort to accept you as you are, rather than allowing them to continue to always view you as being the one who needs to change.

Secondly, if you find that you may be in need of some form of formal support or assistance, then receiving a diagnosis may help you to better be able to access whatever support systems are in place within your area.

A diagnosis should also, at the very least, help others around you to become aware that you are genuinely more in need of care, understanding and support than they had previously thought.

Thirdly, if you want to increase your own levels self-understanding and awareness or further seek to validate your own understandings of yourself as being both true and accurate, then receiving a diagnosis may also provide these assurances for you.

But, if you are a strong-willed person who is confident enough to be able to self-identify with having Asperger’s, without feeling any twinges of doubt about it what so ever, then you’ll most likely feel that either the seeking out, or the receiving a diagnosis, is not for you as it holds little potential to offer you any great benefits.

And that’s okay.

But for me, I have found that those who benefit the most from older women such as myself coming forward and being diagnosed, are the generations of girls who are yet to come and the generation of girls and women who are still today, young enough to incorporate this deeper understanding of themselves as females who are Autistic,  into their daily lives and move on.

At my age, receiving a formal diagnosis offers me purely the ability to understand myself better and enables me to finally ask for the things I’ve known for so long that I’ve needed all of my life, things such as solitude, peace and quiet, but have never been made to feel as if it were okay for me to ask for these things, because I am a woman and women are supposed to love company and to always want to be social creatures.

I had no way of explaining to anyone, let alone myself, why I’ve always felt that I needed so much time alone.

Yet for girls of my daughter’s age, receiving a diagnosis is offering them so much more.

It is offering them the opportunity of being able to grow up with the gift of truly knowing not only who they are, but also understanding how they are, and that they’re okay.

That it’s okay to be different.

And this to me, as both a woman and a mother, is the gift of understanding that I truly believe is worth fighting for.

I am so glad that there were women in the past who had the strength, courage and forethought, to lead the way forward and to lay the foundations that so many of us today are now standing on, by arguing, on our behalf’s, that High Functioning Female Autism is a very real phenomenon.
Believe me when I tell you that I am all too aware that if no woman had ever dared challenge the male based status quo of the understandings of Asperger’s Syndrome of the past, that neither my daughter nor I, would now be diagnosed.

So how exactly does receiving a diagnosis later in life help anyone and what does it solve anyway even if you do get one?

Well, for one thing, it is likely to allow many women to make sense of their pasts.

To knit all of the previously unresolved elements of their lives, their personalities, their characteristics and their traits, into some semblance of a perspective that will finally make sense to them.

So if that one singular perspective that makes sense of your life is the one thing that you’ve been missing, then getting a diagnosis, even at a much later stage in life, can still provide you with a huge feeling of relief.

In terms of gaining greater access to benefits and assistance, if you are already financially secure or successfully working, then no, receiving a diagnosis later in life, may not help you in any way in terms of on the job support training and alike.

But what it will do, is benefit your children, and your children’s children.

And if you’re not a mother yourself, then please understand that your actions and your choices, may end up benefiting your sister’s or your brother’s children.

The knowledge and validity that we as women gain from receiving a formal diagnosis, could well prevent future generations of girls from having to put up with the kinds of constant bullying that are caused by male bias ignorance.

This will enable them to grow up holding all of the answers to all of the questions that we once, as children held locked inside of our own heads, like fragile eggs, and were too afraid to ask why it was that we were so different from everybody else.

If being diagnosed later in life can help to take away from another child, that awful sense of confusion and self-loathing that comes from knowing that they don’t belong, without ever fully knowing or understanding why, then I’m all for it.

So whilst a formal diagnosis may not seem to be such an important deal individually, in the grand scheme of things, I can see how each and every woman and girl, diagnosed today, can help create a stronger, better defined and more brightly lit path, for our Autistic girls of the future to walk upon.

Unlike us, they won’t have to spend over half of their lifetimes stumbling around in the deep and uncertain dark, and that’s a good thing.

I’m not sure whether holding ideas like these makes me a dreamer, or simply yet another deluded fool.

Either way, the more women and girls who are diagnosed today, the harder it will be for the powers that be, to dismiss the needs of Autistic Women in the future.

I understand that this way of looking at things is not everybody’s cup of tea, but it certainly is mine. So comment and let me know whether or not you agree.

Are Women with Autism evading diagnosis?

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“In the absence of significant intellectual or behavioral problems, girls with ASD-like traits are more likely than boys to evade a diagnosis of ASD.” Spectrum.

Academics, researchers and professionals’ need to stop using terms such as “evading diagnosis” and “masking symptoms” when discussing female Autism.

In essence, what they’re really discussing when they apply terms such as these, are their own inabilities to correctly identify Autism in women.

There is absolutely no value to be found in perpetuating the myth that women with Autism run around wilfully trying to avoid detection simply because professionals have become lackluster within the confines of  their own diagnostic processes.

As a woman with Autism I can tell you that we are not running around trying to avoid detection.

Nor are we, in our daily lives, actively striving to “evade” diagnosis.

In fact, we’d actually quite like it if all professionals developed the ability to recognize female Autism in girls sooner, faster, more adeptly and at a much younger age than say, oh I don’t know, 40.

Perhaps then, the facts that girls and women with Autism experience as many sensory and processing difficulties throughout their lives as boys and men with Autism do, can be openly acknowledged and understood by all.

Perhaps then, there wouldn’t be so many undiagnosed women trying to desperately figure out why they’ve always felt so awkward around other people and berating themselves for being so different.

Perhaps then, we’d also have seen more changes within the diagnostic process had the discussions surrounding female Autism focused less on our techniques of supposed evasion, and more on the inabilities of professional’s to accurately detect and diagnose female Autism in the first place.

No amount of double talk should detract us from the fact that improvements for women with Autism will only occur once the flaws in the area of diagnostic accuracy have been addressed.

Especially considering that we can’t technically diagnose ourselves, regardless of how thoroughly we research Autism or how deeply we ponder the prospect.

The only option left to us, it would seem, is to strive to change the parameters under which knowledge pertaining to Female Autism is currently being collected and constructed.

So it’s up to us to point academic researchers in the right direction when it comes to female Autism because apparently if we don’t, they’ll simply all keep listening to each-others bad ideas and encouraging each-other to see traits that aren’t really there whilst continuing to ignore those traits which really are.

This is a somewhat ironic state of affairs considering that we’re the ones who are supposed to lack the ability to see the bigger picture.

We’re also supposed to lack the capacity for self-awareness, yet all a researcher really needs to do these days, is type in the search terms ‘female + Autism + Blog’ and they’ll soon have all the evidence they need to confirm that we are indeed an extremely self-aware bunch.

 

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.

Asperger Syndrome in Females: An Underdiagnosed Population

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Asperger syndrome (AS) is an Autism Spectrum Disorder (ASD) characterized by significant impairments in social interaction, and rigid, stereotypical, or repetitive behaviours that exist alongside normal language and cognitive skills (Fitzgerald & Corvin, 2001). Researchers often use the terms Asperger syndrome and high-functioning autism interchangeably (Attwood, 2006), and so for the purposes of this paper, Asperger syndrome will encompass both diagnoses, and assume an IQ in the normal range, i.e., > 70. The ratio of males to females with AS is currently about 10:1, and on average, boys are referred ten times more often for diagnostic assessment (Wagner, 2006). Overall, the lack of knowledge about girls and women with AS is mirrored by a relatively small amount of empirical research dedicated to this population (Thompson, Caruso, & Ellerbeck, 2003). Much of the available literature includes clinical observations, case studies, and anecdotal evidence.

Some feel that the uneven gender ratio is a natural reflection of biological sex differences. Jones, Skinner, Friez, Schwartz, and Stevenson (2008) propose a sex-linked genetic cause, and argue that the single X chromosome in males is inherently vulnerable, creating a lower threshold of susceptibility to AS. Alternatively, Baron-Cohen and Wheelwright (2004) hypothesize that gender differences in brain specialization may explain the male-dominated ratio, and contend that while females are naturally better at empathizing, males tend to think in a systemizing way. They conceptualize Asperger syndrome as an extreme systemizing form of the normal male brain that may develop due to high levels of testosterone exposure in utero. The question arises, however, as to what extent sex differences are biological, or influenced by sociocultural factors.

In contrast to the researchers that find support for the current gender ratio, many believe it is inaccurate (e.g., Attwood, 2006; Rastam, 2008). Thompson et al. (2003) claim that a long-standing sex bias in AS research has resulted in diagnostic criteria too dependent on a male prototype, and point out that 80% of all ASD study samples have been male, on average. They suggest further that our present knowledge about ASD is actually knowledge about males with ASD. Nyden, Hjelmquist, and Gillberg (2000) highlight comparable issues in the diagnostic criteria for Attention Deficit Hyperactivity Disorder (ADHD), while Rastam (2008) parallels the development of criteria for clinical eating disorders, based largely on the signs and symptoms prevalent in females. Hully and Lamar (2006) suggest that overdependence on a male prototype means that traits in females must appear exaggerated for diagnosis. Ironically, researchers are finding it difficult to obtain samples on females that are large enough to allow for comparison by sex (Hartley & Sikora, 2009). This paper will explore how psychiatric disorders may mask AS in females, gender differences in phenotypic expression that can cause diagnostic confusion, and the attitudes and behaviour of others toward females with AS that can contribute to a missed diagnosis.

Several disorders have the potential to overshadow Asperger syndrome in females including depression, ADHD and Anorexia Nervosa (AN) (Hartley & Sikora, 2009; Rastam, 2008; Ryden & Bejolet, 2008). Researchers feel that the risk of misinterpreting signs and symptoms is strong, and could lead to misdiagnosis, or failure to recognize AS as the primary disorder (Cooper & Hanstock, 2009; Ryden & Bejolet, 2008). Hully and Lamar (2006) observed that as girls grow older, the presenting problem is less often associated with a developmental disorder, and stress that clinicians must take a detailed patient history to rule out AS in females. Accordingly, Ryden and Bejolet (2008) found that adult women with AS comprised a large portion of the psychiatric outpatients that they studied (39 females and 44 males), and speculate that many females do not receive an accurate diagnosis until they seek treatment for a comorbid disorder.

Although the gender ratio for childhood depression is 1:1 in the general population, by adolescence, females are three times more likely to receive a diagnosis of depression (Cooper & Hanstock, 2009). In fact, Ryden and Bejolet (2008) found a history of depression most often in patients that had not received a diagnosis of AS until adulthood. This could underscore a lack of awareness of how Asperger syndrome looks at different ages, and in females. Symptoms that often cause diagnostic confusion include a flat affect, minimal facial expressions, flat intonation in speech, irritability, and social isolation (Cooper & Hanstock, 2009). Hartley and Sikora (2009) found that girls with ASD, as young as 1.5 years of age, displayed an anxious or depressed affect more often, which lends support to this idea. In addition, Cooper and Hanstock (2009) discovered that Jane, initially referred for confirmation of a mood disorder, had a stable baseline mood over a long period. They concluded that failure to recognize significant social impairments, along with a flat affect and monotone voice, a number of school changes, and normal IQ and language skills, resulted in a misdiagnosis of depression.

Holtmann et al. (2007) found that females, across the entire sample that they studied, had significantly more attention difficulties than males, and similarly, Nyden et al. (2000) established that girls, aged 8 to 12 years, had greater impairment on the Freedom from Distractibility subscale than boys in the same age range. Greater attention difficulties in girls and women suggest that a misdiagnosis of ADHD may occur more often in this population. In accordance with this, Ryden and Bejolet (2008) assert that the lack of common sense and social disinhibition inherent in AS could be mistaken for impulsiveness, further increasing the likelihood of an incorrect ADHD diagnosis.

Ryden and Bejolet (2008) also discovered that adult female patients with Asperger syndrome scored higher on scales measuring borderline and passive aggressive traits, and mood instability, despite presenting with the same core AS features as males. Holtmann et al. (2007) uncovered a similar trend in their analysis of a matched subgroup of males and females.

Although core impairments were also equal in both genders, girls scored higher on scales measuring peer relationship impairments, social immaturity and dependency, as well as compulsive and bizarre behaviour, with older females scoring the highest. Similarly, Cooper and Hanstock (2009) found that Jane’s social impairments and deviance from her peers were more obvious as she grew older.

These findings suggest that if a clinician fails to notice a girl’s severe social difficulties in childhood, the result could be an incorrect diagnosis of BPD later on. Likewise, Ryden and Bejolet (2008) state that undetected AS might exist in a subgroup of older females diagnosed with BPD, which further emphasizes the importance of taking a detailed patient history when considering diagnosis. In addition, they stress that concepts of personality disorder and abnormal personality traits are difficult to separate in Asperger syndrome, and propose that a different model is needed to explain “odd personality” in this population.
Written by A. MacMillan

Women and Autism – How one woman’s letter to a psychologist finally helped her receive an ASD diagnosis after years of personal invalidation.

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This amazing letter was written by a woman who suspected that she may be on the Autism Spectrum, prior to meeting her psychologist for the first time. Here’s what she had to say.

“Dear Dr L—

I hope in this letter I can give you a more thorough explanation of how I feel, the way these feelings affect me and why I think a diagnosis and continued support would be beneficial to me.

I have an over-active mind and experience high anxiety.

I constantly see things at multiple levels, including thinking processes and analyse my existence, the meaning of life, the meaning of everything continually.

Nothing is taken for granted, simplified, or easy.

Everything is complex.

Being serious and matter-of-fact has caused me many problems and I have been told on numerous occasions that I come across as rude and/or abrupt.

Every year my work progress development report says that I would benefit from some kind of people management course, which to date has never happened.

Making friends or developing relationships has always been and still is very difficult for me.

As a child, I was convinced that I was away the day everyone decided who they would be friends with.

This has always been an area that has caused me confusion.

I still have a constant feeling that I am misplaced, isolated, overwhelmed, and have been plopped down in the wrong universe.

If I had friends, my tendency was to blindly follow wherever they went and to escape my own identity by taking on theirs.

I dressed like them, spoke like and adapted myself to his/her likes and dislikes.

I have had a couple of “friends” in my life for a very long time but I mostly talk to them online as I do not like leaving the comfort of my safe environment.

Even with people I know well I do not like being in their houses as my anxiety levels hit the roof.

I get agitated and uncomfortable not knowing what to say, what to do, if I’ve over stayed my welcome or would it be rude if I left now, have I stayed long enough.

This leads to seriously high stress levels, nasty thoughts in my head, sweating, increased heart rate and a sudden urgency to flee.

When I know I don’t have to be anywhere, talk to anyone, answer any calls, or leave the house, I can take a deep breath and relax.

Even something as simple as a self-imposed obligation, such as leaving the house to walk the dog can cause extreme anxiety.

It’s more than just going out into society; it’s all the steps that are involved in leaving–all the rules, routines, and norms.

Choices can be overwhelming: what to wear, to shower or not, what to eat, what time to be back, how to organize time, how to act outside the house….all these thoughts can pop up.

I struggle when I’m out with sounds, textures, smells and tastes, which in turn creates a sense of generalized anxiety and/or the sense that I am always unsafe or in pending danger, particularly in crowded public places.

There have been times in crowded places like shops where the confusion and anxiety has gotten so high that I have had to just say “I need to go” and have walked out and straight to the car to gather my thoughts and calm down.

Counting, categorizing, organizing, rearranging, numbers brings me some ease and has been with me ever since I can remember.

Over the years I have sought out answers as to why I seemed to see the world differently than others, only to be told I’m an attention seeker, paranoid, hypochondriac, or too focused on diagnoses and labels.

My personhood was challenged on the sole basis that I “knew” I was different but couldn’t prove it to the world.

My personhood was further oppressed as I attempted to be and act like someone I’m not.

I have children diagnosed with ASD and am concerned that I am not doing the best for them due to my own inhibitions.

Still I question my place in the world, even more so now that my son has a diagnosis of ASD and I see so many similarities between what he’s going through and my own personal experiences.

How can I help them to adapt and learn when I don’t know myself how to deal with the situations that are causing them the most problems?

I would really benefit from help in learning to deal with my issues.

Now that I understand the Autism Spectrum and am convinced I am well within the spectrum, the hope is that I will get support and advice can benefit me and allow me to help my children.

My hope is that through diagnosis and the support that should follow; I will be able to work on the areas that I lack the necessary skills for dealing with society, in.

If I can get help for myself it will put me in a better position to guide and help my children.

Apologies for the lengthy explanation, I hope I have given you the information you were seeking. If not please don’t hesitate to contact me.

Yours sincerely

Amanda”

 

Amanda is sharing this letter in the hope that it may help other woman avoid some of the pain and confusion she’s experienced in her own life. Thank you so much for your willingness to help others Amanda ❤

 

Myths, Lies and Suspicious Minds – Debunking the popular misconceptions that surround the lives of adults with Asperger’s Syndrome

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Since first being recognized in 1944 by an Austrian paediatrician, Hans Asperger, the neurologically diverse disorder known as Asperger’s Syndrome, has  arguably become one of the most widely misdiagnosed, socially misunderstood and contentious disorders on the Autism Spectrum.

For this reason, those living with Asperger’s Syndrome often find themselves having to battle against a sea of erroneous professional and social misconceptions (myths) which leave them wide open to a consistent stream of criticism and suspicion as to who they truly are, their levels of ability, and the validity of their ‘unusual’ ways of being the world.

The aim of this article is to redress some of the myths that have sprung up regarding Asperger’s Syndrome  over time.

Myth 1: Asperger’s Syndrome is both an over and under Diagnosed condition that only affects males .

Since its addition to the DSM in the late 80’s researchers have contended that Asperger’s Syndrome is a condition that has been both significantly over and under diagnosed.

Given such paradoxical assertions, one could argue that contentions surrounding either the over or under diagnosis of Asperger’s Syndrome, appears to be very much dependent on which ever ways the  political winds of the time are blowing.

For example, there are some who contend that a 1992 U.S. Department of Education directive to enhance services for children diagnosed with “pervasive development disorder, not otherwise specified (PDD-NOS),” led to a flood of diagnosing  “socially awkward children” with Asperger’s Syndrome as a knee jerk reaction to achieving higher levels of funding and support for those children.

Since then the question has often been asked:

“ At what point should a child’s  eccentric, aloof or ‘oddball,’ behaviours be considered a developmental condition instead of a potentially passing phase?”

Questions like these have led to a high degree of social scepticism over the validity of an Asperger’s diagnosis, with many choosing to believe instead that Asperger’s is merely a diagnosis of convenience, used by parents to try and excuse their children’s bad behaviours.

Beliefs such as these have fed into a tendency to either under diagnose  or delay the diagnosis of children with Asperger’s Syndrome.

They have also further  added to the high degrees of intolerance and  lack of understanding that  parents of children with Asperger’s Syndrome, particularly girls, routinely describe experiencing in the  difficult and  stressful process of trying to seek help, support and acceptance for children on the Autism Spectrum.

There is no doubting that rates of under diagnosis have had a particularly strong impact on the lives of women and girls, whom it was once believed could not experience Asperger’s Syndrome..

More recently researchers have begun to contend that boys are no more dramatically susceptible to the syndrome than girls; rather it’s the fact that girls present or manifest the disorder in ways that are different to boys that have led to their high levels of under or misdiagnosis.

Though many females have remained undiagnosed for a variety of reasons, including the fact that girls are better at blending in, or that some AS traits are seen as being more socially acceptable in girls, there are females with Asperger’s Syndrome within our communities and more and more females are being diagnosed with Asperger’s Syndrome every day..

This improvement in the rates of girls now being diagnosed can be directly attributed to the many adults, particularly women, who are now speaking out about the debilitating impacts that growing up as a child with undiagnosed Asperger’s Syndrome has had on their lives.

If we listen to the experiences of those adults who are now speaking out, we should all be able to become more aware that the level of damage caused by refusing to legitimately recognize the symptoms of Asperger’s Syndrome in a child, regardless of their gender, can be catastrophic.

The stories of those who have lived through the pain of being undiagnosed should serve as a reminder to us of the importance and the need to engage in an accurate and unbiased  diagnostic process, untethered to either political or financial interests.


2 Myth: Asperger’s Syndrome only affects children: Therefore adults can and should grow out of it with time.

Many people have a tendency to think that Asperger’s Syndrome only affects children and that adults can and should be capable of growing out of it.

Such thinking has evolved in parallel with the idea that all children with ADHD can be medicated and will  eventually grow out of the condition.

Similarly, people also presume that adults with Asperger’s Syndrome, should somehow have been cured of it via early intervention therapies and other treatments by the time they reach adulthood.

Such ideas are both erroneous and extremely harmful to adults with Asperger’s Syndrome who struggle daily to attain some small degree of acceptance and understanding for their symptoms.

As it stands, there is no cure for Asperger’s Syndrome because it is neither a disease nor a disorder that people can turn on or off at will or that can be treated and made disappear by the use of medication.

One of the main reasons why the myth that Asperger’s Syndrome isn’t as common among adults as it is among children has persisted, may well be the fact that adults often have had a lifetime of  trial and error experiences to draw upon, which subsequently helps them to mask their symptoms for brief periods of time.

This skill unfortunately also enables people to believe that a person’s Asperger’s Syndrome is capable of going away. Which of course it isn’t.

Rather than allowing people to presume such nonsense I like to think of it this way:

Adults do not grow out of having Asperger’s Syndrome,  but rather, after living a life time of observing others and figuring out for themselves which environments and people are best suited to them, many adults with Asperger’s Syndrome grow into a deeper acceptance of themselves and therefore seek out life styles, where possible, that better suit their needs.

In this way I believe that adults grow into their Asperger’s Syndrome, not out of it.

So now that we’ve established that adults can and do legitimately have Asperger’s Syndrome it’s time to move on to some of the most common misconceptions about adult’s with AS.

 

3 Myth: Adults with Asperger’s Syndrome are attention seeking, cold, aloof, loners, who don’t care about the needs of others.

This is perhaps the most harmful myth of all. It has been said (and sometimes by fairly prominent people within the media) that Asperger’s Syndrome is just an excuse for some people to behave like sociopathic jerks.

This is not true. As with the formerly more well-known form of classic Autism, those with Asperger’s Syndrome do not choose to have this challenging condition.

They are not trying to be deliberately rude by avoiding eye contact, social interactions or loud, unfamiliar environments such as parties or large family gatherings simply as a way of gaining attention.

Part of the problem for those with Asperger syndrome is that personal relationships, including familial relationships, often require them to try and take part in hyper social activities that contain all of the many unwritten rules and social cues, those with Asperger’s Syndrome find so confusing.

As a result they will often avoid taking part in such activities.

Yet get a person with Asperger’s Syndrome in a one on one situation, without all of the distractions of a loud or unfamiliar environment, and you will often find that they are very warm, witty and generally caring people.

It really is as simple as that.

Yet despite this simple truth, those with Asperger’s Syndrome, whose outward appearances mark them out as being more focused on their own needs rather than on the social niceties of life, still often find themselves being ostracized and misunderstood by others.

Another very simple truth is that the vast majority of those with Asperger’s Syndrome desperately want to be liked and accepted by others. They just don’t know how to achieve this because unlike neruo-typicals, those with Asperger’s Syndrome were not born with the same intrinsic toolbox of social understandings and awareness’, that those born without Asperger’s Syndrome take for granted.

So although people with Asperger’s have routinely been viewed as being quiet, introspective people who are cold and aloof, the truth is that more often than not, they are simply people who are either too shy or too scared of being misunderstood, to say a word.

Another area of life that may make those with Asperger’s Syndrome appear aloof, or unable to put the needs of others first, involves the impacts that sensory issues may have on them.

For this reason, the need to maintain an environment that lessens the impacts of their sensory issues often creates within those with Asperger’s, an over-riding drive for safety that can become far more important to them than taking part in the social niceties of life.

But this does not mean that all Aspies are introverts, indeed some are also extroverts.

A good rule of thumb to remember is that if it looks like an Aspie is ignoring you, chances are they’re not, they’re merely observing your interactions and being cautious

And speaking of being cautious, here’s another myth that desperately needs busting.

4. Myth: Asperger’s is a dangerous mental illness that makes People more prone to Violence 

Due to modern media discourse and  the recent spate of sad and unfortunate instances of loner male teens committing acts of unthinkable violence, several erroneous links between such teens and those with Asperger’s Syndrome has once again raised speculations that Asperger’s may be a form of mental illnesses.

Such speculations however  represent both an immense lack of understanding in regards to mental illness in general and of Asperger’s syndrome itself.

Asperger’s syndrome is not a mental illness.

It is a neurological/developmental disorder.

Unlike classic or severe Autism, those with Asperger’s syndrome are often not diagnosed until school age when they’re lack of interaction with peers and the inability to automatically understand social cues begins to mark them out as being in some way different from their peers.

Although those with Asperger’s syndrome may also experience high levels of anxiety and a predisposition towards depression, it as yet unclear whether or not these conditions occur in tandem with Asperger’s Syndrome as a result of either sensory overload of the constant desire of society to force those with Asperger’s Syndrome to assimilate into social and environmental situations which they may find either uncomfortable or excruciating.

For instance, if you have an extreme sensitivity to sounds, being forced to sit amidst a classroom full of noisy peers would be enough to trigger  both extreme anxiety and discomfort.

If you don’t believe the debilitating effects this can have on an individual with Asperger’s Syndrome, then try going to a heavy metal rock concert with an ear infection and see whether or not you enjoy standing in front of the speakers.

Chances are, you will not.

However, unlike those with Asperger’s Syndrome, nobody is likely to accuse you of having a mental illness simply because you found being in a loud environment with painful ears unbearable.

The sheer logic alone of trying to associate the reactions of those with Asperger’s syndrome experiencing sensory overloads with the actions of those experiencing psychotic mental illnesses is once again extremely flawed.

So flawed in fact that it is now widely accepted by psychiatrists and psychologists alike that there are few, if any, alleged links between Asperger’s Syndrome and extreme acts of wilful violence to be found.

Hence those with Asperger’s Syndrome are no more prone to violence than the general population.

The only crime it appears those diagnosed with Asperger’s syndrome are guilty of is that of being somewhat eccentric by exhibiting behaviours that do not fall within the realms of what society considers ‘normal’.

Once again these are issues of socialization, not violence.

In conclusion, Asperger’s Syndrome, is considered a “developmental disorder” that a person is born with.

While no one knows exactly what causes Asperger’s Syndrome, what is becoming clear is the fact that the levels of misconception and suspicion that often surrounds adults with Asperger’s Syndrome, make it a tough and lonely disorder to live and deal with on a daily basis for many.

One key way in which we can begin to redress many of the myths and misconceptions that surround the experiences of adults with Asperger’s Syndrome would be to encourage those with the condition to discuss their struggles openly and honestly without all of the leering suspicions that have become so much a part of their daily lives.

The hidden wave of women with undiagnosed Asperger’s Syndrome.

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If you’re a woman who feels that you don’t ‘fit in’ with those around you….

Or that you have always been, somehow, just that little bit different to everybody else…

Or that you never seem to see things the way others do….

Never seem to find the right words…

Or know instinctively the right social cues to follow at any given time….

Or you’re a shy, introvert who loves her family and seeks little experience from the outside world…

Or even if you simply feel, as if you are an actress, caught somehow on the outside of your own life….

Always looking in, but rarely truly, outwardly taking part……

Then chances are you’re not likely to admit it out loud to anyone, for fear of being thought of as strange, depressive or delusional.

As women, we’re encouraged not to express our discontentment at the world.

That to do so would mark us out as maladaptive in some spectacularly, psychologically, disturbing way.

We’ve been told for so long that we’re not allowed to admit to feeling socially awkward, shy or simply genuinely disinterested in the pantomime of other people’s lives as they go on all around us, that in order to cope some of us have chosen instead to pretend.

To mimic that which we’re told we should say, be and do.

Which is fine for a while…… but only a while….

Eventually, those of us who genuinely feel as if we don’t ‘fit in’ or that we are ‘different’ in some unknown way to everybody else, will head off in search of answers.

For an increasing number of women, those answers are being found within the growing body of knowledge surrounding the way in which Asperger’s Syndrome presents in women and girls.

More and more women are, if not self-identifying with Asperger’s, then at the very least beginning to question whether or not their quirks and unconventional character traits, (which in the past would never have been spoken of and hidden away), are consistent with the presentation of Asperger’s Syndrome in women.

Yet even throughout this process of questioning the self, which for many can become an outright mission to find the answers that have eluded them, women who  suspect that they may be Aspies, are still experiencing a severe lack of understanding and acceptance from those who are the professionals in the field.

Women in their waves, are now crashing up against the harshness of psychologists, whose glory days are so far away from the realities of the here and now, that they are unable to turn their gaze away from the hazy thinking of the past, long enough to truly listen and engage with what it is that the women of today have to say.

Let alone even begin to understand why they are saying it.

As a consequence of this, many women are either being turned away and denied a diagnosis or worse still, being misdiagnosed with some errant version of a personality disorder, by those who should know better, yet still remain unable to refrain from placing the blame of every woman’s “affliction” on some variant of depression.

The damage this form invalidation is causing to a subset of women, who have already lived at least half of their lives, feeling so out-of-place that they’ve had to hide who they really are and what they really feel, is immeasurable.

Yet despite this onslaught of diagnostic invalidation, women with undiagnosed Asperger’s are not going away.

Instead they are taking to forums, forming alliances and sharing their all too familiar stories, with each other.

And the more they share, they more they are becoming aware that they are not alone.

That this is happening to women everywhere, from every variant of socio-economic background, culture and region.

There is a wave of officially undiagnosed women with Asperger’s Syndrome out there, treading water, not too far from shore, just waiting their turn and sooner or later, they will land.

Women and Girls on the Autism Spectrum

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“In recent years, questions have been raised about the ratio of males to females diagnosed as having an autism spectrum disorder (ASD). Overall the most recent studies suggest that the prevalence of autism spectrum disorder is about one in 100, but what of the male/female ratio?

There is no hard evidence of numbers. Various studies, together with anecdotal evidence, have come up with male/female ratios ranging from 2:1 to 16:1.

Whatever the true ratio, clinical referrals to a specialist diagnostic centre such as The National Autistic Society’s Lorna Wing Centre have seen a steady increase in the number of girls and women referred.

Because of the male gender bias, girls are less likely to be identified with ASD, even when their symptoms are equally severe.

Many girls are never referred for diagnosis and are missed from the statistics. At The Lorna Wing Centre, emphasis is placed on the different manifestations of behaviour in autism spectrum conditions as seen in girls and women compared with boys and men.

In our paper (2011) we have identified the different way in which girls and women present under the following headings; social understanding, social communication, social imagination which is highly associated with routines, rituals and special interests. Some examples cited in the paper are:

• Girls are more able to follow social actions by delayed imitation because they observe other children and copy them, perhaps masking the symptoms of Asperger syndrome (Attwood, 2007).

• Girls are often more aware of and feel a need to interact socially. They are involved in social play, but are often led by their peers rather than initiating social contact. Girls are more socially inclined and many have one special friend.

• In our society, girls are expected to be social in their communication. Girls on the spectrum do not ‘do social chit chat’ or make ‘meaningless’ comments in order to facilitate social communication. The idea of a social hierarchy and how one communicates with people of different status can be problematic and get girls into trouble with teachers.

• Evidence suggests that girls have better imagination and more pretend play (Knickmeyer et al, 2008). Many have a very rich and elaborate fantasy world with imaginary friends. Girls escape into fiction, and some live in another world with, for example, fairies and witches.

• The interests of girls in the spectrum are very often similar to those of other girls – animals, horses, classical literature – and therefore are not seen as unusual. It is not the special interests that differentiate them from their peers but it is the quality and intensity of these interests. Many obsessively watch soap operas and have an intense interest in celebrities.

The presence of repetitive behaviour and special interests is part of the diagnostic criteria for an autism spectrum disorder. This is a crucial area in which the male stereotype of autism has clouded the issue in diagnosing girls and women.

As highlighted above, the current international diagnostic criteria do not give examples of the types of difficulties experienced by girls and women. In order to recognise the different behavioural manifestations, it is important to take a much wider perspective regarding the social, communication and imagination dimensions in addition to the special interests and rigidity of behaviour.

The girls and women learn to act in social settings. Unenlightened diagnosticians perceive someone who appears able and who has reciprocal conversation and who uses appropriate affect and gestures as not fulfilling the criteria set out in the international classification systems.

Therefore a diagnosis is missed.

It is only by asking the right questions, taking a developmental history, and observing the person in different settings, that it becomes clear that the individual has adopted a social role which is based on intellect rather than social intuition. To quote:

“The fact that girls with undiagnosed autism are painstakingly copying some behaviour is not picked up and therefore any social and communication problems they may be having are also overlooked. This sort of mimicking and repressing their autistic behaviour is exhausting, perhaps resulting in the high statistics of women with mental health problems.” (Dale Yaull-Smith, 2008).

It is important to prepare girls for a life of quality as adult women.

Schools need better trained staff to recognise and address the needs of students on the autism spectrum and especially the more ‘subtle’ presentation in girls.

Schools need to be more ‘girl-friendly’ with girl orientated personal, social skills classes.

There needs to be a focus on the ‘hidden curriculum’ which directly teaches the skills that typically-developing girls learn indirectly and intuitively, such as the unwritten rules of girls’ social interactions. Girl orientated personal, social and health education should be part of the curriculum.

Schools educating girls on the autism spectrum should focus on teaching independence and strategies to reduce vulnerability.

They also need to address self-image, self-esteem and confidence building. Gender identity is a big issue for girls, as is emotional wellbeing and fostering mental health. Society has expectations of both men and women, but many women on the autism spectrum believe that these expectations are greater for women.

In the book ‘Asperger’s Syndrome for Dummies’ (Gomez de la Cuesta & Mason 2010), the authors touch on this issue and describe different ‘types’ of women on the autism spectrum. At work, women experience ‘a glass ceiling that is double glazed’ according to the authors. Women experience the same difficulties as other women, plus the difficulties experienced by women on the autism spectrum. These women often go into professions that are traditionally male-orientated. Harder (2010) has produced a booklet called ‘Illustrated glimpses of Aspergers for Friends and Colleagues’. This gives a valuable insight into the difficulties women on the autism spectrum experience at work and provides explanations to colleagues of the different ways in which such women perceive the world.

The difficulties in the diagnosis of girls and women arise if clinicians continue to use the narrow definitions set out in the International Classification Systems.

It cannot be stressed enough that diagnosis and full assessment of needs cannot be carried out by following a checklist. Proper assessment takes time and detailed evaluation is necessary to enable a clinician to systematically collect information which not only provides a diagnostic label, but more importantly, a detailed profile of the person.

We wish to draw attention to the fact that many women with an autism spectrum condition are not being diagnosed and are therefore not receiving the help and support needed throughout their lives. Having a diagnosis is the starting point in providing appropriate support for girls and women in the spectrum. A timely diagnosis can avoid many of the difficulties women and girls with an autism spectrum disorder experience throughout their lives.”

Dr Judith Gould and Dr Jacqui Ashton Smith
Good Autism Practice, May 2011
This post originated from http://www.autism.org.uk/about-autism/autism-and-asperger-syndrome-an-introduction/gender-and-autism/women-and-girls-on-the-autism-spectrum.aspx