Why do women on the spectrum, fall short on some diagnostic tests?

Life can be alienating and challenging at times, especially if you’re driven primarily by both intellect and intelligence, head strong and far to independent in thinking at times.  If your someone who does not seem to fit the female, or any stereo type for that matter, and not so common at all as it would appear, a minority, life can have its more challenging complications in a sense. The more learning done through time seems to highlight, that personally, I don’t think in the common sense kind of way the majority do.

Many a time I have been asked question’s, answered and returned In kind, been given insights and returned them, have helped and been attempted to be helped, for more than half or all my life. In some proceptions and perceptions it hasn’t worked yet though, not in the ways it should, well that has and is my opinion as of late, after what I’ve been reading and learning.  This is yet another branch, and the reason behind the question, why do women fall short on the diagnostic tests for autism? (More acutely me).

A clinical psychiatrist once told me she would be very interested in reading my analysis and views on where I fit on the spectrum.  This is why I am going to be dedicating a separate section headered in my side bar on the Natural Empathiser, titled My Feministic journey into the spectrum, in a question based theme, in the order there done and published, A book Blog so to speak. To many questions needing answered in my head that keep bouncing off one another, needing an out let.

Questions along the lines of what are the statistical differences between diagnosing a male or female? Are the features harder to recognise? In what way do you consider something a repetitive behaviour or restricted interest? What does it mean to show signs or not? What signs would you like me to show you, me or the chameleon? When I show me I confuse, frustrate or simply annoy the person trying to get the answers, becoming disabled or appearing disorderly under certain lights.

Before going further I will give a brief outline of the journey being diagnosed autism entails, from my knowledge and understanding at this time over years of gathering and experience.  Hopefully getting my point across that the diagnosis can come with many terms and labels, as I have discovered.  Names associated with the spectrum include Autism, Autism spectrum disorder, (ASD) or condition (ASC), three types atypical/classic/Kanner autism, Asperger syndrome or pathological demand avoidance to name but a few.

There are constant changes, some more recent than others, being done to the main diagnostic manuals for the ‘autistic spectrum disorder’ (ASD), which is predicted and most likely to become, the most commonly given name when referencing someone diagnosed on the spectrum.  Obviously additional terms will be used for deeper understanding and analysis, but ASD is the one word it is categorised and generalised as, when describing the particular autism profile showcased by the individuals.

Another point to note is, someone diagnosed or symptomatic of the spectrum, may also have learning disabilities, mental health issues and other conditions separate to the diagnosis of ASD, which can and often does, complicate the diagnosis period. In my case the Bermuda triangle, ADHD, ASD and Bipolar type 2, the trio from the start of this journey that still seems quite accurately insightful, but needing further analysis from those qualified. I believe that for more consistent and linkable communication, for all parties involved, possibly lessening the confusion, can be obtained with more frequent periods of time spent with the individual in question.  In my current opinion, if possible, it would help or at the very least give more insight, into the individual whether autistic or not, or so one would think.

If the clinician or person assigned to aiding an individual lacks experience in autism, or other conditions/illnesses, they can make numerous assumptions that are incorrect, both informative and misleading, disabling and influential at times, and vice versa for the patient to the professional.  People or systems, whether consciously aware or ignorantly, that do not take the issues related to autism into account, are part of the problem that needs a solution through teachings and learnings.  The reason I say this, is because you could find your self stuck on the long road around, instead of cutting right through the middle, which can be a dissatisfying and detrimental cycle to become stuck upon.

For years I’ve had professional and unprofessional opinions telling me I am or am not this or the next thing, so who do you listen to when your own voice can be so confusingly frustrating at times, forever entwined with the voice of many? A wise woman pointed out that to much information can be a bad thing as well, but I argue against this to some degrees, it’s knowing what to do with the information in question that can lead to the most interesting discoveries.  Moving this piece, creating or uncovering a new piece to fit the gap,  manipulating and imposing the abilities to expose insights into seeing the bigger, more precise and clearer picture.  Words and how they are implemented paint a picture, body language paints another, and so forth.

Back to explaining the diagnostic manual and the one in question being referenced, being briefly described to give some insight for those interested. It is the tenth edition, which is the most current, for the International Classification of diseases, (ICD(10)).  Inside this book, which I am yet to find time to properly delve into, contains a number of autism profiles such as Asperger’s, under the Pervasive Developmental Disorder heading defined as,

recordable abnormalities in reciprocal and social interactions alongside patterns of communication.  Also restricted stereotyped repetitive patterns of interest and activities determining how they function in all relevant situations

There is a manual that is not most commonly used in the UK, it s the fifth edition of the Diagnostic and Statistical manual.  It is predicted to significantly influence the next edition of the  ICD which is used by many diagnosticians.  It has been recently updated so the diagnostic criteria are simplistically more clearer, and now includes sensory issues, which is where I score extremely high in comparison to the other criteria, followed closely with social and communication.

Here is where my interest spikes because if this is the case, it would be extremely useful to me, and I hope it does significantly influence the next edition of the ICD.  My reasons to support this statement are as follows. I am living proof of how detrimental these issues impact day-to-day living and because I do not have the diagnosis, I can not access the help and support to hopefully change that cycle, impacting my children and those attached.  It also includes support needs and other factors that impact on the diagnosis.  So what is the current criteria for being diagnosed with the official label of Autism spectrum disorder (ASD).

To get a full diagnosis instead of a partial if my knowledge is correct, you have to meet all 3 of the criteria for social communications and interactions, restricted and repetitive patterns of behaviours, activities or interests (including sensory behaviour) present from early childhood, that influences and impacts day-to-day living.  Also you have to be able to answer these questions which can be challenging if communication falls under your disability.

“Knowing where to draw the line is challenging for everyone and is at the end of the day, a choice influenced by vast and varied circumstances, situations or events, but a decision down to the individual.”

The Autism Diagnostic Observation Schedule, documents the behaviour of the adult, when they were children.  I am a 30 year old female adult who’s gender is female, with at least average intelligence, by my own opinion and others. Without a shadow of a doubt, I would now agree and say, that it is in fact, an extremely challenging group of individuals to diagnose. It seems, where women are concerned anyways, the ones diagnosed have dramatic signs in one domain, usually communication or social interactions, and mild to moderate signs in the other two domains.  Whereas more commonly documented research highlights that the majority of males show more moderate signs across all three domains.

The reasons for looking into Autism started off personal, and still is to some extent but runs much deeper now, I don’t know if I would be this persistent if it only involved myself.  Unfortunately or fortunately, depending on perceptions and conscious knowledge and understanding ,when I’m looking into it I have three people in mind, a pre-schooler boy (3-5), tweeny girl (10-13) and a mature female adult (25+).  From what I am learning there seems to be a pattern developing, a focal point seems to be that women more commonly flag up for one criteria, where males more consistently flag up for all 3, this is not always the case though.  Even in the majorities of the minorities, you have splinter groups where they are outnumbered and often missed.

I keep hitting a brick wall where the population seems somewhat divided on their views with regards to sex differences.  I keep hearing quotes and references along the lines of;

“giving the scope of the study, surely if there are sex differences or whatever else they are bound to show up??”

Not necessarily because to me it seems common sense their are differenced between sex’s in some regard or another, taking further to difference in the individual.

The gap between differences in sex and individualism seems confusingly wide to myself and others at times, therefore I intend to look further into this when the time arises.  What I do know is that our body make-ups are different, grouped into the male and female sex at birth.  What stems from that is another story entirely, and one I am still at the baby stages of learning and understanding.

There are current consistent patterns developing over time and analysis in the majority, in relation to repetitive behaviours and restricted interest.  Studies that point to the possibility that both women and men present differently and would benefit from, diagnosis tools that take gender differenced into account.  Is that just me or is that yet not again common-sense to the process of finding answers for the individual?

My opinion is starting to lean toward the notion there should be questionnaire’s structured around these criteria’s and differences considered and implemented.  I’m never going to struggle getting an erection, I do not have a penis??? The medication is not effecting my man hood, or the questions are not relevant because you are aiming it at the wrong sex, therefore the question and questionnaire is a point-less and irrelevant in some shape to me, the individual in question.  Therefore it is just one point that gives credit to the argument, that it is mostly male orientated and research based at this present moment, that can change.

Are we beginning to blur the lines too much between individualism and sex differences, this remains a question pin balling around my head.  Both sex’s and those stemmed from it are stigma and stereotyped in some way, everything can be and is expected to dance to the steps orchestrated and choreographed by societies expectations and wants, from whichever and whatever group you may fall into, given the current timeline.

The ADI-R appears to highlight the possibilities caregivers and parents tend to recall, fewer repetitive behaviours during their childhood for women than men, which then trudges up more questions.  Am I caught up in the loop of researchers relying on the ADI (R) to diagnose me?  If so is that why even the partial diagnosis is so hard to obtain here in the UK for a female, the other diagnosis given beforehand fail in comparison on an emotional wellbeing level.

I thank my persistent, dog with a bone nature or I would probably still be stuck on the slippery slope of depression.  There is no fail safe guaranteeing I will not fall back onto it if all patterns and behaviours were so transparent.  I’m not saying that the ADI (R) isn’t one of the best ways for identifying those behaviours, I’m not saying it is either.  What I am saying is they are all relevant in highlighting different linkable, comparable and relevant information.  What is done from this information is down to the individual and those involved.

Leads me yet again to the thoughts that maybe, 3 test specifically designed and structured for a male, a female and both sex’s combined, as the root basis.  What would branch from there is something unknown and above my knowledge, understandings and education.   By adding 2 gender orientated questionnaires alongside the combined into the mix already there, might increase the likelihood of reaching more individuals.

Many women (men as well for the minority), do not receive a full diagnosis and are often misdiagnosed with conditions such as ADHD and social communications disorder, rather than autism.  The reason for this is because the individuals relevant to this statement do not meet the criteria with regards to their repetitive notions.  I’m forever shifting my compass, from one end of the spectrum to the other just trying to live.

As I have said there are so many different terms associated with the word diagnosis such as autism profiles, diagnostic manuals and tools, alongside varied research and quite commonly said, misdiagnosis.  Life affects everybody in multi-dimensional complex ways on many vast and varied levels of difficulty, depending on the individual.  Subjects I’m focusing on currently are language and cognitive development, emotional intelligence, motor development, avoidance to demands and expectations, anxiety, control and social demands.

One thing I can say that I am sure of,  all these questions both disable and enable, influencing and impacting the individuals involved, both the patient and the professionals.  More so the patient though who is there, probably in crisis but also a choice based on necessity, creating difficulties predictable and not, in obtaining clinical support and access to more useful and beneficial resources.

I for one am extremely clumsy at times, disastrous and end up quite bruised especially on my legs, is this possible dyspraxia. My body language and behaviour is unexplainable to some at times is this border-lining personality disorder. Depending on the current clinician aiding in the search for answers, experiences, insights and views impact what is transpired. Sometimes I am so switched on its intimidating for the majority of personality types, as my passion in what I am discussing or saying, can be mistaken and commonly misinterpreted as aggression, something I’m working on so I don’t retreat back under the rock, I’ve just managed to resurface from under.

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naturalempathiser

I enjoy writing and believe everyone has a story. I have hit a brick wall when searching for my own answers so, I have been looking at alternatives and becoming a blogger seems a good choice. No, we can't get answers to all our questions alone but, together the possibilities are endless

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