Girls and autism seem to be a topic of some debate. Why are there so many more high functioning autistic boys than girls? Are boys more prone to autism that girls? Could certain aspects of autism even be sex linked, thus making them only present in boys? Or is something else entirely going on. Something that has caused a serious bias in recognizing and diagnosing autism - making it almost impossible to “see” in girls. Have we treated high functioning autistic girls like boys and tried diagnosing them as such? My thought is yes. I believe doing this has denied these girls years of services and support.
Girls are natural pleasers. They are inherently good at copying behaviors. Girls on the spectrum can be excellent at copying behaviors that they think please others. They become experts at this. Boys on the spectrum typically don’t do this. This copying of behaviors is just that - coyping. It doesn’t mean they understand. When girls on the spectrum mature and get into more complex social situations they aren’t able to copy behaviors anymore - they become confused and scared. That is why so many of these girls start to really struggle in their teen years. Early diagnosis is critical for girls to teach them the social skills they will need in their teen years. Copying simply won't cut it.
One of the big flags for autism is an unusual focus on something. For boys this is often particularly odd items like wheels, fans, or parts of objects. It is very intense and the child will typically not talk about anything else or do anything else. I find it frustrating that the same interests were expected of my daughter when I was originally trying to have her diagnosed. However, studies show that high functioning autistic girls have restricted interests in things like dolls, animals, imaginary friends or books. By restricted interests I mean restricted interests. You don’t take them away. You don’t mess with their game. These children talk almost exclusively about their interests regardless of whether or not other people appear interested. Restricted interests are abnormal in intensity. So even though with girls they may be normal topics, whereas the boys’ topics may not be, the intensity is not. However, keep in mind that girls are pleasers. So a girl is much more likely to stop talking about her interest when asked to do so than a boy. Grace’s interests are animals. As a little child she compulsively held, categorized, labeled, lined up and tracked about 45 little hard animal toys. She ALWAYS knew where they were. She knew every tiny mark on each one. They all had names. If someone touched one or moved one it was grounds for an ENORMOUS melt down tantrum. Today real animals have replaced her “hard animals”. She is a literal encyclopedia of factual information about animals. If you want to know something, please just ask Grace - it’s faster than Google.
Another flag for autism is delayed speech. This also may look different in girls than in boys. If you’ve read my whole blog you will know that Grace stopped talking for a period of 3-4 months when she was 12 months old. She started speaking at about 12 months. Then stopped. Then slowly started again. After that she struggled to regain language. Then again at 2 1/2 she regressed with language and basic communication skills. When we had her diagnosed the first time this was not enough of a regression for an autism diagnosis. However, the second time the doctor clearly stated that she had had a regression in language evident for a child with autism. The doctor who diagnosed her with autism is well trained in recognizing the differences between autistic girls and boys.
When Grace was diagnosed the diagnosis was made based on 22 different assessments. All which validated a diagnosis of autism. It was a very lengthy process. One of the assessments, and the one that most determines an autism diagnosis, is the ADOS-Module 3 (Autism Diagnostic Observation Schedule). She scored an 11 on this. The cutoff is a 7. This indicated significant symptoms of an ASD (autism spectrum disorder). The practitioner who assessed and diagnosed her began her day with the ADOS. She told us that when Grace arrived she was not going to be particularly friendly with her. She was doing this because she KNEW that kids (especially girls) warm up and start to want to please adults. Yes - even autistic ones. This skews the data in an assessment. She was very cut and dry in greeting Grace and went straight to administering the ADOS. These were some her findings that supported her diagnosis...
- flat/restricted tone of voice
- lack of spontaneous sharing of information
- over dependency on prompts in conversation/little elaboration
- rarely asking examiner for information about her thoughts or feelings (even when being prompted to do so)
- gave only limited accounts of events in own life even with leading questions
- restricted range of facial expressions
- limited use of gesture
- little shared enjoyment
- limited insight concerning her role in social situations
- little social give and take
- general one-sided or unusual social interaction resulting in a reduced quality of rapport
- little to no spontaneous or creative make-believe play (even with modeling and prompting)
Now. I know that Grace is capable of doing some of these things. The point is that WITHOUT SUPPORT, or without a RELATIONSHIP from someone she can COPY or MODEL she is not. This examiner knew that and assessed her properly. When we went to OHSU I watched the doctors and therapists there joke around with her, call her “adorable”, and make her smile and laugh while they were testing her! What a cute little girl she was. Blond hair and blue eyes. Ribbons in her hair. How tempting that must have been. I wonder if they did that with the little boys that were brought in?
You see friends, we don’t treat our girls fairly. So often we refuse to see them suffering because “they act so good”. Boys tend to act out. Girls tend to act in. We need to take a good hard look at how we assess the needs of girls so we don’t miss the chance to save one of them.
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