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As a “girl” with autism, the subject of girls and autism is dear to my heart.
In spite of the questions I get about girls and autism, until now, I hadn’t prepared an adequate response. I simply told people what it was like for me and gave a really general answer.
So, I decided to put pen to paper (fingers to keyboard!) and give you all a starting point to help you to navigate the issues around girls and autism.
I wanted to get you information quickly. I realize you don’t need answers today, next week, next month – you need it yesterday, last week and last month.
This post will be edited, added to, and maybe broken up into several posts in the future. For now, I think it will help you get started. Also, let me know if it helps, if you need more, etc., by commenting below.
I am not a psychiatrist, psychologist, medical doctor, therapist, etc., I am an autist. So I am writing from the position not of having formally studied autism, but having lived it.
Also, I am omitting discussion of actual brain functioning here as it goes beyond the purpose of this post. If there is demonstrated interest, I will cover it in a later post. In addition, at some point in the future, I will write on the state of research about girls and autism.
The Short and Sweet Truth about Girls and Autism
The short and sweet truth about girls and autism is sad.
- We don’t know much about what causes it.
- What it looks like largely remains a mystery.
- We don’t know how to manage it.
It hurts just to read that, doesn’t it? Much less live it.
And the scary truth is that it has come a long way.
But if we really break down not only what we do know, but also, what we don’t, it becomes clear that there is enough information to begin to manage the process of navigating the subject of girls and autism whether as a parent or as an autist yourself.
In fact, in areas like girls and autism where little is known, being aware of how to use the knowledge of what we don’t know proves critical.
The Convoluted History of Girls and Autism
Just over a year ago, the internet was alive with information that initially autism was thought to only occur in boys. The lack of research involving girls and autism seemed explainable. I wish I could go back in time, because as I write this piece, I am searching for those same articles. They appear to have disappeared. I find that to be concerning.
Gone are the justifications around the lack of research about girls and autism and in their place are articles stating the importance of better understanding it.
Initially, according to my reading a year ago, autism was thought to occur in boys only, a view held by Hans Asperger whose initial study was thought to include four boys, but may in fact have been larger. Though he later revised his opinion, it set the stage in favor of boys.
At about the same time, however, Leo Kanner conducted a study of 11 children. This study took place in 1944 and, significantly, of the eleven children three were girls. Which tells us that researchers recognized autism in girls, or the possibility of it, as early as 1944.
When I began drafting this post, I thought writing the history would be simple, now I realize I owe you a much more thorough look at the original documents because from several days of research on my computer here at home, I actually cannot give you a justification for why research, and therefore diagnostic tools, focused almost solely on boys and men.
What is Autism?
Very simply put, autism is a communication disorder.
Take a minute and think about all the symptoms and issues you associate with autism.
Now read the diagnostic criteria as defined by the Diagnostic and Statistical Manual of Mental Disorders (DSM). Hopefully, you saw what you expected to see, but I bet lots of you saw way less. Realize that a fair number of symptoms and behaviors that occur and are attributed to autism exist as a result of comorbid disorders , but get lumped in with autism.
Below, I have included information about characteristics of autism in girls and women as reported by girls and women with autism. As research catches up with reality, hopefully there will be changes to the DSM V or at least the diagnostic assessment to reflect the characteristics reported by women such as these.
Just my two cents!
How Do we Diagnose Autism?
Diagnosis for girls (and boys) is done by behavioral observation by diagnosticians and by self-reporting. Self-reporting means that the girl or woman in question and/or her parents answer questions asked by the diagnostician. The results are then compared to the criteria of the DSM V.
Psychologists generally issue the diagnosis, though the process often involves other medical and mental health care professionals.
There is no physical examination included – ex. no blood test or brain scan involved.
The Basics of Evaluating Girls for Autism
Though it is unclear why researchers largely ignored girls and autism, it is clear they developed diagnostic tools based on research for boys and men. Further, all widely admit that girls are going undiagnosed or are misdiagnosed with a frequency no one can grasp and that those misses may have far reaching ramifications.
At best, we underserve girls with autism. At worst, we fail to serve them at all. Or vice versa depending on the outcome of the error.
What do we know?
Here just a few commonly agreed upon things:
- Autism does exist in girls. A friend of mine recently sat next to a special education teacher on a flight. The teacher assured her it does not. I, myself, have been told similar falsehoods. Don’t listen to those folks. It does exist. I exist. Lots of others like me exist.
- Girls tend to be diagnosed later than boys. How much later is more controversial, but the general consensus is that it is later. Girls lose a piece of information that may enable them to obtain beneficial resources and services.
What don’t we know?
So here is what we don’t know:
- We don’t know what autism looks like in girls. (See a discussion of the characteristics of girls and autism at below. Know that it is not scientific, but based on information from women and girls with autism.) Some argue it looks different in girls than in boys and others argue there is not evidence to back this claim.
- We don’t know how to diagnose it since we don’t know what it looks like. Note, medical and mental health professionals will tell you we do know how to diagnose it. They would tell you we use the DSM V (see below*). Those same bodies of professionals will tell you that girls with autism are not being diagnosed properly (See above.)
- We don’t know how to create and provide services and resources because, again, we don’t know what it looks like. Girls, for example, are believed to demonstrate fewer repetitive movements than boys. Many services, however, focus on reducing these very behaviors girls are not evidencing, at least not to the same extent as boys. Not very helpful. Here I presume that if we knew what it looked like, a diagnostic tool would be short in coming and the opportunity to develop better services and resources would advance.
You may be wondering how any girls get diagnosed at all.
And that concern is valid.
The reality is that while some girls do get diagnosed, others are not diagnosed, misdiagnosed and many never seek diagnosis. Why seek a diagnosis for something when you can’t even get a description of what it looks like?
*A note here: arguably, the DSM V is provides a clear diagnostic criteria for diagnosing autism and will be relied on by diagnostician in determining whether to diagnose autism until such time as it is changed. The issue is that these criteria have been developed using research on autism in boys and men.
Should you seek a diagnosis for yourself or your loved one?
If you are reading this article you may well be struggling with this question.
It is a tough one to answer. And there is no right answer, just an answer that is best for you.
In making the decision, consider the following:
- Are the criteria of the DSM V linked to above relevant? (Remember, you do not have to demonstrate all of the traits to be diagnosed.)
- Ponder the characteristics of autism as reported by women who have it (see below). Do they describe you? (Remember they will not be considered during an evaluation.)
- Are you having difficulty interacting with the world? How much?
- What level of difficulty you anticipate in the future?
- Are there benefits you believe you could realize in being diagnosed or ruling out the diagnosis? What are they?
Taking some time to answer these questions and consider this will lead you to the answer you seek or at least put you well on your way.
You can read about my own path to diagnosis in my post, “Coming Home: The Clarity of Knowing My Confusion Stemmed from Autism” and you can also read examples of how it changed my life in my posts, “After a Diagnosis of Autism, Life Became ‘Decidedly’ Easier,” and “How My Autism Diagnosis Helped Me Communicate More Effectively.”
Let’s assume you decide to pursue an evaluation for autism. What are the possible outcomes?
Diagnosed with Autism
What does a diagnosis of autism mean for a girl?
- It probably does mean that the girl has autism as the risk of a false positive at least appears to be fairly small.
- It means the girl demonstrated enough of the DSM V criteria (characteristics of autism in boys) as to be diagnosed though the level of autism she demonstrates may still be in question. When autism is diagnosed there are levels of autism which may be determined by the diagnostician. Levels range from Level 1 indicating a least severe form of autism to Level 3 indicating the most severe. When diagnosed in girls on a scale made for boys, accurately ascertaining their level of functioning is tricky. Does a girl who hits the scale enough to be diagnosed with autism have more severe autism? Are we actually able to determine its severity? Certainly, these are questions for further research.
- She will be eligible for certain resources and services for which she may not otherwise have been eligible.
- She will begin to have an understanding about what is different about her that may enable her to better identify strengths and weakness, needs and wants.
- She will have words to discuss with others what is different about her and why some of her strengths and weaknesses, needs and wants are different.
What can you do now that you have a diagnosis?
- Determine whether you need or want to use resources or services which can include but are not limited to the following:
- Behavioral Therapy
- Medication or treatment for any comorbid disorders
- Complementary therapies: ex. music, equine or art therapy
- Support Groups
- Online resources
- Work to identify how you will pay for those resources or services.
- Does your insurance cover the therapies you want to use?
- Does the government have any programs that will cover the treatment plans you have?
- Can you afford to cover the resources or services you have chosen?
- Are there ways to raise money for the resources or services that you need?
- Locate providers for those resources or services you want to use.
- Verify after a few uses that these are right resources, services or providers.
- Watch progress to determine whether to seek additional diagnoses if not made at the time of the autism diagnosis.
- Make adjustments as necessary.
I will cover this more in future posts, but here is a starting point.
What does a negative diagnosis (a finding that a girl does not have autism) mean?
Here I am going to again state my disclaimer. I am not in any way trained to diagnose anyone with autism or to say that they do not have autism. My next statements may be a bit controversial. Yet, I am going to make them because I think they it need to be said.
A negative diagnosis means a girl does not have autism – unless it doesn’t.
Diagnosticians will base their decision on the criteria of the DSM V which we know evolved based on research on boys and men. They are right in so doing. Even I won’t argue that, though I would argue for the need to develop a tool that results in dependable diagnostic results for girls. Diagnosticians here are in a rough spot. A girl who does not perfectly fit the DSM V, but who, in their experience fits the profile of a girl with autism may or may not get a diagnosis.
How does a false negative diagnosis occur?
Depending on the age of the girl/woman being evaluated, any of the following (and probably a number of other factors) could make diagnosis difficult:
- The use of a diagnostic tool developed based on research on boys and men.
- Actual existence of more than one disorder that makes unraveling symptoms and diagnoses difficult.
- Similarities between the symptoms of the often confused disorders makes diagnosis hard.
- Difficulty communicating symptoms and difficulties.
- Use of effective coping strategies that well cover the symptoms of autism. These can make it difficult for the diagnostician to see the problems asserted.
- Disbelief by the diagnostician that the reported symptoms/behaviors are actually occurring. This may occur as a result of the manner in which they are being communicated or some other reason.
- Lack of understanding of the presentation of autism in girls and women by the diagnostician.
- Under-communication of symptoms by the evaluated individual/parents which can occur for a number of reasons including but not limited to:
- Inadequate understanding of which symptoms or behaviors to report.
- Inadequacy of a diagnostic assessment tool designed based on research on boys and men.
- Time between occurrence of behavior/symptoms and time of evaluation – as girls or their parents/caregivers sometimes forget certain behaviors or symptoms that occurred earlier in life that may be relevant and that they either have learned to compensate for or no longer exhibit.
So what do we do with a negative diagnosis?
Ask yourself some questions:
- What is your intuition telling you?
- Do you want to accept the conclusion that autism is not present?
- Were there any warning factors that may make you think this outcome was wrong?
- Were the clients of the office you were in predominantly male?
- Did the diagnostician tell you autism was the same in boys and girls?
- Did the diagnostician make his/her decision based on factors that lean toward characteristics of autism in boys?For example, did he/she note the girl did not show enough repetitive behavior – something currently thought to be reduced in girls as opposed to boys?
In short, were there flags that made you want to doubt the diagnosis and seek another opinion?
What are the potential impacts of a false negative diagnosis?
- A false negative diagnosis can cause you to doubt your intuition even though you were right. This can undermine your confidence in standing up for yourself or your child as you progress through the system.
- You may experience frustration because the girl or woman knows something different but they do not know what.
- You may be denied the ability to determine an appropriate course of action such as treatment plans or communication strategies.
- A diagnosis is required for eligibility for certain financial benefits. A lack of one will result in ineligibility for those financial benefits that could make right resources affordable.
- A lack of diagnosis will result in disqualification for accommodations at work or in school such as changes in work environment or increased time for test taking, etc.
- Others may judge you and engage in “I told you so” behavior pointing out that the problem is behavioral rather than biological. This can result in reactions that heighten anxiety or depression or other comorbid disorders in the person who was denied the diagnosis. It can also lead to anxiety and other problems for their caregivers where relevant.
- You may experience a loss of self-esteem/self-confidence, etc., as you cope with difficulties for which you were told there is no explanation.
Note: These impacts could be felt for years or even a lifetime.
If you feel the diagnosis (really lack of a diagnosis) was in error what can you do?
- Know that you have options!
- Keep working on your general health. The healthier you are, the better you will be able see potential symptoms of autism and other health conditions.
- Employ behavioral strategies consistent with a positive diagnosis, and see if they work. Lots of strategies don’t require a prescription or doctor’s referral. There are everyday things you can try: a weighted blanket, a swing, sticking to routines.
- Seek a second or third opinion if you need it to feel you have the right result. I’m not suggesting you shop for a diagnosis. I’m suggesting you continue to investigate until you feel confident with the result.
- Wait for a period of time and let the result sink in. Then decide whether after the passage of time you feel better or more confident about it. Allow that your clinician may be right. You may not be dealing with autism.
- Allow research and science to catch up to girls and autism and seek an evaluation again at a later time.
- Seek services for which you are eligible or can afford while you determine which course of action is best for you.
- Continue to do research on girls and autism.
- Network in the autism community to learn more.
- Find other avenues for services and providers who know more about girls and autism.
- Determine whether there are other conditions that may be at play. See if treatment for those conditions helps.
- Work on identifying triggers for the behaviors that led you to seek an evaluation. Once identified, work to reduce their impact – ex. if you develop anxiety in crowded places, avoid crowded places by timing shopping differently or shopping online.
- Routinely check to see if the above strategies are working or needed.
- See if science (or public dialog) has progressed such that a better method is available.
- Accept the diagnosis and move forward.
The unfortunate truth is that girls with autism are sometimes misdiagnosed. Under the right conditions, misdiagnosis may be more detrimental than receiving a false negative diagnosis.
How does misdiagnosis occur?
Misdiagnosis occurs in the same manner as a false negative diagnosis. See the Not Diagnosed section above.
There are many disorders around autism that can look very similar and require an experienced and sensitive diagnostician to unravel. Actually, when there are several disorders at play or under consideration, it may take a team of providers to sort out and unfortunately, some trial and error may be involved. And realistically, frequently just in an evaluation for autism a team is already involved.
Disorders often diagnosed in place of an autism diagnosis include but may not be limited to ADD/ADHD, bipolar disorder, depression, anxiety, eating disorders.
What are the ramifications of misdiagnosis?
The ramifications of misdiagnosis are largely the same as those listed above in the Not Diagnosed section. They also include such serious potential impacts such as the following:
- Prescription of medication for a disorder that the girl or woman does not have.
- Treatment or therapy in a facility or by providers for a disorder that a girl or woman does not have.
- Development of the very disorders for which they are misdiagnosed because of exposure to treatment for conditions they do not have.
If you feel you have been misdiagnosed, what can you do?
- See the list above in the Not Diagnosed section.
- Consider whether you want to begin treatment for the diagnosis you were actually given or whether you want to wait until a second opinion has been obtained. Discuss with your provider the risks of doing so.
- Take time to consider whether the diagnosis is correct. These diagnosis you initially feel are a miss may be a comorbid disorder which you have in addition to autism if an autism diagnosis has actually been missed.
Undiagnosed Girls with Autism
Here I am referring to those girls and women who never seek a diagnosis. After reading everything above, it becomes easy to see how that can happen.
Girls or their parents or women may read the DSM V and think that this disorder does not “fit” them. They may show few repetitive behaviors. Some of these girls develop sophisticated compensation skills. They work much harder to fit in and often don’t realize it. In other words, they may not seek diagnosis because they look normal on the outside and they have learned, however unfortunate, to discount or tolerate the difficulty they are experiencing on the inside.
The ramifications of remaining undiagnosed for these women and girls may be any of those listed above, but may also include things like living a life with confusion about why they are different.
On the flip side, some of these women may live fairly normal lives and never question whether they have autism. A key factor may be how high functioning they are or how far outside of their comfort zone they must or want to go.
Always remember that if at any point you have decided not to pursue a diagnosis, you can change your mind and pursue one at a later date.
Throughout this post, I really have tried to point to some areas I think may be ripe for misinformation and/or lack of information, but here is a short summary for you:
- Do not let anyone tell you they know what actually NO ONE knows.
- Be wary of sites that do not allow that autism is different in girls. There are many out there that have a post or two about how autism is different in girls and yet the vast majority of their posts do not differentiate between autism in boys and girls.
- Consider by analogy those sites that clearly quote the adage that, “If you know one person with autism, you know one person with autism.” Many of those same sites then go on to lump all people with autism together. Cringe worthy stuff.
- Choosing a provider who claims to be an “expert” on girls and autism is risky because there are few experts!!! Ask potential providers lots and lots of questions. There certainly are people who have studied all, or at least lots of what is out there, but they can’t know more than what is out there, which is not a lot. At best, then an “expert” knows what there is to know. Anyone who claims to know more should probably be avoided.
- Interestingly there are controversial studies and theories claiming that girls have some genetic protection from autism. This presumption seems to me quite amazing since we have yet to really define what autism in girls actually is and we know that we are not diagnosing and misdiagnosing.
- Much of the research that has been conducted involved very small sample sizes which may not be large enough to obtain accurate results. Those samples are growing, but it is hard to have a large sample when you are not diagnosing the condition because it has not yet been defined.
- Don’t ever let pushy providers cause you to doubt yourself. If you are uncomfortable with a provider seek out a new one. Just like you would not return to a restaurant with poor service, do not go to a mental health provider with poor service.
- Remember, a diagnosis is only as good as the diagnostician, the information provided them and the behavior of the child at the time of observation (girls and boys can control their behavior for a period of time which can make diagnosis difficult.)
Characteristics of Girls and Autism
An interesting note here is that I have actually had professionals tell me that because I only have autism, and have not formally studied it as they have I can’t possibly understand it. Needless to say, these are not providers with whom I have further discussions or appointments, but there you have it.
Some would discount the very information to which I am going to point you.
I describe how it feels to me to have autism in my post, “The Seemingly Contradictory Journey of Girls with Autism.”
There are a few fairly comprehensive lists at which you may want to look. Keep in mind as you read these that not only are these people autistics, but they have personalities as well (hard to believe I have to say that out loud, isn’t it?). My point being that some of the things they report may fit into that bucket rather than the potential criteria for an autism diagnosis.
The following are links to these lists. Please know that I do not endorse theses sites in anyway, but wanted to give you a description of autism (which now includes Aspergers) in the words of the women who live it. I hope these help you!
- Females with Aspergers Syndrome Checklist by Samantha Craft
- Aspergers Traits in Girls by Willow Hope
I am fascinated by one of the more commonly reported characteristics of girls with autism which is that they are social imitators. Previously it had been reported that autists were lacking in imitation skills, but I would point out that for girls to imitate at a level which renders them “invisible” as is often reported, they must not only be good at it, but that it requires intelligence, and not just a little bit. A lot.
And it requires motivation and not just a little bit. A lot.
And it requires that girls take initiative and not just a little bit. A lot.
I mention these characteristics as I frequently hear people criticize girls with autism for not possessing or demonstrating these things. In reality, they demonstrate them every day.
Again, just my two cents.
What Can We Do for Girls with Autism Right Now Today?
- Well, we can take the information provided above and begin to make decisions and to move forward with confidence. We can use what we do know and be armed with knowledge about what we don’t know.
- I am including this point as a result of a reader suggestion which I loved, seek out and participate in research for girls and autism. Make sure you ask questions about the researchers, research methods, research questions, etc., before you participate, but if girls and women do not assist researchers, we will not learn more.
- We can give girls with autism good emotional support, whether from family, friends or providers.
- Focusing on getting right help is crucial not just in terms of mental health, but in terms of general health as well. Struggling through issues like puberty, for example, may involve the advice of an OBGYN, not just a family doctor. I will be adding a post on this at a later date.)
- We can remember that autism does not define women and girls. I hear parents who, when asked to describe their kids say, “She is autistic.” Look for your/her personality separate from your/her autism and enjoy it!
- Celebrate all of your accomplishments, no matter how small they may seem at the time. Every single win moves you forward on your journey!
Because it is time we acknowledge Her Autism!!!