My experience with autism has been quite difficult, and more complicated than it seems. Even though we are living in the 21st century, and the most advanced time period scientifically, there are still medical taboos. When a girl is diagnosed with autism, everything is even more difficult. The moment the doctor diagnoses your daughter and they prepare you for timelines where certain symptoms manifest, all of the data they refer to references “male studies.” My daughter’s diagnosis was my first experience dealing with autism; the fact there was very little research in regards to women’s symptoms shocked me.
I quickly learned there is a lot of information regarding autism, and it’s always in reference to boys. For example, when a mom says my daughter is autistic, there is always someone to respond with something condescending like, “Well you can’t tell; she expresses herself well and doesn’t have problems socializing.” I experienced this myself countless times, and it is infuriating.
On the other hand, my Comadre’s son is autistic and his symptoms are visible. I learned that sadly 80% of girls are not diagnosed at an early age, the reason being they have very different symptoms and behaviors than boys. Many girls have to go through this hard process of growing up and transitioning from schools without any type of help since everything appears to be fine. Then sometimes, if they are fortunate, they are diagnosed as adolescents. The truth is most are not diagnosed because they don’t develop severe symptoms. They go unnoticed.
To make things even more difficult on parents, even when girls are diagnosed at an early age we face statements from professionals like, “she doesn’t need extra help because her symptoms are mild.” Then at their discretion, they end up giving you very minimal treatment and services that in no way cover what your daughter actually needs. The frustrating part is you are the one who is home and facing her meltdowns, since she does not have a clear way of communicating. The professionals aren’t there to see the desperate moments when you have to leave a store because she is angry and yelling and you don’t have access to the resources they would give a male patient with the same diagnosis. Parents like myself try to figure out what works, without knowing how to best help our daughters. All because the “experts” refuse to take their diagnosis as seriously as they would a boy, whom all of the research is geared to serve.
Then, let’s add something brand new to the mix — THE PANDEMIC!! I’m pretty sure that children’s behavior in general has been inconsistent in this unique situation. I know as a mommy of an autistic daughter, these times have not been easy. I believe that it’s time we educate ourselves more and become aware of not generalizing autism. Each child is different, and therefore each child has different needs. We all need to practice being more empathetic and from the moment we hear, my daughter has autism, let’s not say “she seems normal to me.” Instead society and professionals should be ready to listen, and conduct unbiased medical assessments for our daughters. Most parents can sense when something is different with our children, so we want to be heard and taken seriously. At the end of the day everyone should have access to fair and personalized services.
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