Why So Many Women are Living with Autism and Don’t Even Know It
What is Autism Spectrum Disorder?
ASD is a developmental disability in the brain that makes communicating and relating to others very challenging. (2) Signs of Autism Spectrum Disorder can be apparent as early as 2 years old but is more commonly diagnosed around age 4 or even much later. (3) Because ASD makes it difficult for an affected individual to communicate, it is very difficult for the rest of the world to understand how these people feel, and what it is actually like living with the disorder.
What is the Cause of Autism?
Scientists are still trying to determine what exactly causes the disorder. Because autism tends to run in families, experts believe that it may have something to do with genetics. Precisely which genes are responsible for passing down autism, however, remain unclear. There are currently a few other studies in progress that are looking into whether or not autism can be caused by other medical problems or the individual’s surroundings. (2) One thing is certain though, and that is that there is currently no evidence to support that vaccines can lead to Autism. (2)
When discussing the signs and symptoms of ASD it is important to keep in mind that there is no “typical person with autism”. Depending on where the individual falls on the spectrum, symptoms can range from moderate to severe. From the outside, individuals with ASD do not have any physical factors that separate them from someone without the disorder, which is why it can easily go undetected.
Some common symptoms are preferring to be alone and having difficulty making eye contact with others. Children with ASD may not want to be cuddled or held, do not respond when people address them but will respond to other sounds, have trouble adapting to routine changes and may react unusually to different smells, tastes and sounds. (2) In adults, particularly in those with what is referred to as “high-functioning ASD”, the symptoms can be even more difficult to determine. Difficulty relating to or communicating with others (sometimes described as a lack of empathy) is often noted. (4) Repetitive behaviors is another common symptom associated with the disorder. (5)
Living with Autism Spectrum Disorder
Living with ASD can be very isolating and frustrating. Because affected individuals have difficulty with social interactions, they often have a hard time making friends and “fitting in”. For this reason, people with autism, particularly teenagers, are at a much greater risk for becoming depressed and anxious. (2) What many people with ASD want the world to know is that they are not so different from everyone else.
We [people with ASD] deserve a happy, fulfilling life just like everyone else. Despite the fact that we might not show it on the outside, we have the same desires for love, relationships, marriage, a job, and feeling like contributing members of our communities.” – Anita Lesko, nurse anesthetist, diagnosed with ASD at 50 years old. (6)
Could You have Autism?
As previously mentioned, currently 1 in 68 Americans are affected by ASD. Many experts believe, however, that this number In is an underestimate of how many people are actually diagnosed with the disorder. This is because there is a spectrum in which the affected could fall, making it difficult to recognize whether or not an individual’s symptoms are a result of ASD or something else. Furthermore, an individual with autism (particularly undiagnosed autism) will often develop coping strategies that mask their symptoms and therefore are less likely to receive a diagnosis.(7) If you think you are exhibiting signs of being on the autism spectrum, your best bet is to talk to your doctor in order for you to get a proper diagnosis and support you deserve.
The Gender Gap
It is no secret that ASD appears to be more prevalent in males than in females. According to the CDC, boys are about 4.5 times more likely to be diagnosed with autism than girls. (1) This however, may not be an accurate representation of how many women and girls are living with ASD. Many experts believe that the vast majority of cases in women go undiagnosed.
There are multiple reasons for this, the primary reason being that the diagnostic criteria for diagnosing autism spectrum disorder is based off of the behavioral characteristics of men and boys.(7) Because of this, women with ASD tend to present differently than their male counterparts and therefore do not appear to be on the spectrum according to current testing methods. Women with ASD also exhibit much greater compensatory behaviors which masks their symptoms even further.
One study that followed men and women with autism who were matched on age, verbal, performance and full scale IQ found that the women reported levels of autistic traits that were even higher than that of the males in the study. The study noted that as children, boys and girls presented symptoms at a similar level, but as the participants got older, girls and women presented fewer socio-communication symptoms, suggesting that women may be more motivated to develop skills that mask their condition and appear “socially typical”. (8)
Diagnosing Women with Autism
In boys, autism is often diagnosed much earlier in life, sometimes as early as 18 months. Girls, however, usually undergo multiple misdiagnosis before finally finding out they have ASD. This is because while boys tend to become obsessive-compulsive about things such as train schedules or numbers, girls often obsess on learning the rules and regularities of social life and mimicking those behaviors, making them appear completely normal in social situations.
Autism can be much more difficult for girls and women to deal with because while often boys have no interest in socializing, it is very typical for girls and women to want to fit in and “act normal” but their condition prevents them from doing so. For this reason, girls are much more likely to develop depression, anxiety, and even eating disorders such as anorexia nervosa.(9) Studies have also shown that girls with ASD have pastimes and preferences that are more similar to other girls so again, their symptoms are less obvious.(9)
There are different theories as to why females with autism express symptoms differently than males. One theory is known as the “extreme male brain” theory, which is based on the idea that ASD is caused by greater than usual fetal exposure to male hormones such as testosterone. (9) This suggests that autistic minds may be stronger in areas that traditionally male brains are stronger (understanding and categorizing ideas) and weaker in areas that are typically stronger in female brains (considering social interactions and people’s perspectives). (9) With this theory in mind, some experts believe that because females already have the “advantage” of having a female brain, it takes a larger number of genetic and environmental “hits” to alter the brain enough for a female to be diagnosed with autism. This second piece is known as the “female protective” hypothesis, and is yet another reason why females with ASD often have even greater struggles in day-to-day life than males with the disorder. (9)
All of these differences make it increasingly difficult to diagnose a female with Autism, and scientists are still working at developing more effective methods of testing to achieve an earlier diagnosis so girls and women can get the support they need.
How to help your sisters, your friends, yourself
Because it is much more difficult to spot a woman with ASD, you may have a woman in your life who is affected by the disorder and not even know it. Females with ASD differ from males in the following ways:
- Increased social imitation skills,
- A desire to interact directly with others,
- A tendency to be shy or passive,
- Better imagination,
- Better linguistic abilities developmentally, and
- Interests that focus on animals or people (10)
But how can you help? The best thing you can do is talk to your female friends, children or other loved ones about how they’re feeling, ask them how they feel in social situations and pay attention to their moods, interests and the way in which they communicate. Females with autism often have an extreme desire to talk with and interact with others, but are uncomfortable or uncertain how to approach people and start the conversation, so it is important that you reach out to them and ask these questions. There are many different diagnostic checklists that you can find (such as this one) that, while they are not necessarily scientific, may be able to point you or your loved one in the right direction and start the process.
- Autism Spectrum Disorder (ASD). (2016, July 11). Retrieved September 25, 2017, from https://www.cdc.gov/ncbddd/autism/data.html
- Autism – Topic Overview. (n.d.). Retrieved September 25, 2017, from http://www.webmd.com/brain/autism/autism-topic-overview#1
- Autism Spectrum Disorder (ASD). (2016, March 28). Retrieved September 25, 2017, from https://www.cdc.gov/ncbddd/autism/facts.html
- Baron-Cohen, S., & Wheelwright, S. (n.d.). The Empathy Quotient: An Investigation of Adults with Asperger Syndrome or High Functioning Autism, and Normal Sex Differences. Retrieved September 25, 2017, from https://link.springer.com/article/10.1023%2FB%3AJADD.0000022607.19833.00?LI=true
- Bodfish, J. W., Symons, F. J., Parker, D. E., & Lewis, M. H. (n.d.). Varieties of Repetitive Behavior in Autism: Comparisons to Mental Retardation. Retrieved September 25, 2017, from https://link.springer.com/article/10.1023%2FA%3A1005596502855?LI=true
- Autism Spectrum Disorder (ASD). (2017, June 06). Retrieved September 25, 2017, from https://www.cdc.gov/ncbddd/autism/features/living-with-autism-spectrum-disorder-anita.html
- Frith, P. U. (n.d.). How can you tell if an adult is autistic? Retrieved September 26, 2017, from http://www.bbc.co.uk/guides/zqvf4j6#zqgc7hv
- M., Lombardo, M. V., G. P., Ruigrok, A. N., Wheelwright, S. J., Sadek, S. A., . . . Baron-Cohen, S. (2011). A Behavioral Comparison of Male and Female Adults with High Functioning Autism Spectrum Conditions. PLOS One Tenth Anniversary. doi:https://doi.org/10.1371/journal.pone.0020835
- Szalavitz, M. (n.d.). Autism–It’s Different in Girls. Retrieved September 26, 2017, from https://www.scientificamerican.com/article/autism-it-s-different-in-girls/
- Lai, M., Lombardo, M. V., Auyeung, B., Chakrabarti, B., & Baron-Cohen, S. (2015, January). Sex/Gender Differences and Autism: Setting the Scene for Future Research. Retrieved September 26, 2017, from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4284309/
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