Current statistics suggest that autism affects 1 in 110 children and 1 in 70 boys. Those are amazing findings really, spurring a lot of people to wonder about the huge "spike" in autism over the last 3 decades. Honestly, I don't believe there has been as much as a "spike" as the statistics would have us believe. It is my belief that the spike has actually been in the proper diagnosis of autism, and not a huge rise in actual cases.
Only 30 years ago, we knew much less about autism than we do now. I think that literally hundreds of thousands of people with the disorder were lumped into the "Mentally Retarded" or "Mentally Ill" categories just a few decades ago. In fact I know a 25-year-old man - the son of some very close friends - who couldn't be more of an "Aspie" if he had "Aspergers" tattooed on his forehead and bore the name Sheldon Cooper (Big Bang Theory), yet he was diagnosed as ADHD with a possible personality disorder throughout his school years. He struggled, but never received special help since he was clearly very intelligent. His poor parents heard no end to the whole "He just needs to apply himself better" song and dance from doctors and school officials.
The statistics also suggest that far more boys are in the autism spectrum than girls. Although this may be true to some degree, I also believe that currently girls are less likely to receive a correct diagnosis of an autism spectrum disorder. In fact, we waited years to get a correct diagnosis for Iraq.
Why are girls less likely to be diagnosed with an autism spectrum disorder than boys?
This goes back to that age-old problem of medical science placing the vast majority of resources into studying males and simply assuming that females would obediently follow along in their presentation of medical disorders. This is why there is a push right now in the medical community to publicize emerging facts that heart attack symptoms are *different* in women than they are in men. The symptoms are different? It's freakin' 2011 and we're just telling people this now? Heart disease is the number 1 killer of women, but it took us this long to figure out that the symptoms in men and women aren't the same at all?
Welllllllllll... The same thing is true for diagnosing many issues, including autism spectrum disorders. While some doctors are privy to this enlightenment, there are still many who are muddling about in the dark ages of demographic diagnostics. Here is a *very* simplified and brief list of differences:
Because females are wired to be far more emotionally and socially aware than males in general, the differences in the way autism spectrum disorders manifest in females can be rather remarkable.
From the time Iraq was a small baby, we told her pediatrician that we though something was amiss. The doctor who happens to be one of the best pediatricians in the North Dallas area would reassure us time and again that Iraq was well within "normal" parameters and was likely just 'sensitive."
When Iraq was 3, we took her to a specialist who slapped a diagnosis of Oppositional Defiance Disorder on her and showed us the door. When Iraq was 4 we moved from Texas to Virginia and took her to another specialist who felt she was ADHD. He insisted he did not see any of the "typical" signs of an autism spectrum disorder because Iraq made eye contact. (Don't you feel better knowing that an ASD in girls can be properly diagnosed based upon ONE symptom mostly present in BOYS?) Yeah... didn't think so!
When Iraq was 5 we took her to a different specialist in a different town. A female specialist. A female specialist who did her homework on the difference between boys and girls. To start, she gave us a diagnosis of PDD or Pervasive Developmental Disorder which is a rather non-committal term for a person showing some symptoms of being in the spectrum. At least we were finally on to something!
It took 5 more doctors of different specialties (the same awesome female specialist mentioned above sent us all around town) and another year before we landed on an diagnosis of Aspergers! Whew! What a ride!
Of course now Iraq is 7-years-old and we can really see the ASD behaviors now we know more about the diagnosis and what to look for.
The moral of this story is that if you are not satisfied with one doctor's opinion, get 10 more! Don't assume a doctor knows everything - especially as new information comes out every day. Don't assume that if you read a list of symptoms that any females were used in the study that determined what those symptoms were.
After all - it has taken us this long to make it publicly known that the symptoms of the leading killer of women - heart disease - are different in women than they are in men. Autism is not a leading killer, so it is safe to assume we still have a long way to go before autism spectrum disorders are properly diagnosed in girls as quickly as they are in boys.
Only 30 years ago, we knew much less about autism than we do now. I think that literally hundreds of thousands of people with the disorder were lumped into the "Mentally Retarded" or "Mentally Ill" categories just a few decades ago. In fact I know a 25-year-old man - the son of some very close friends - who couldn't be more of an "Aspie" if he had "Aspergers" tattooed on his forehead and bore the name Sheldon Cooper (Big Bang Theory), yet he was diagnosed as ADHD with a possible personality disorder throughout his school years. He struggled, but never received special help since he was clearly very intelligent. His poor parents heard no end to the whole "He just needs to apply himself better" song and dance from doctors and school officials.
The statistics also suggest that far more boys are in the autism spectrum than girls. Although this may be true to some degree, I also believe that currently girls are less likely to receive a correct diagnosis of an autism spectrum disorder. In fact, we waited years to get a correct diagnosis for Iraq.
Why are girls less likely to be diagnosed with an autism spectrum disorder than boys?
This goes back to that age-old problem of medical science placing the vast majority of resources into studying males and simply assuming that females would obediently follow along in their presentation of medical disorders. This is why there is a push right now in the medical community to publicize emerging facts that heart attack symptoms are *different* in women than they are in men. The symptoms are different? It's freakin' 2011 and we're just telling people this now? Heart disease is the number 1 killer of women, but it took us this long to figure out that the symptoms in men and women aren't the same at all?
Welllllllllll... The same thing is true for diagnosing many issues, including autism spectrum disorders. While some doctors are privy to this enlightenment, there are still many who are muddling about in the dark ages of demographic diagnostics. Here is a *very* simplified and brief list of differences:
Because females are wired to be far more emotionally and socially aware than males in general, the differences in the way autism spectrum disorders manifest in females can be rather remarkable.
From the time Iraq was a small baby, we told her pediatrician that we though something was amiss. The doctor who happens to be one of the best pediatricians in the North Dallas area would reassure us time and again that Iraq was well within "normal" parameters and was likely just 'sensitive."
When Iraq was 3, we took her to a specialist who slapped a diagnosis of Oppositional Defiance Disorder on her and showed us the door. When Iraq was 4 we moved from Texas to Virginia and took her to another specialist who felt she was ADHD. He insisted he did not see any of the "typical" signs of an autism spectrum disorder because Iraq made eye contact. (Don't you feel better knowing that an ASD in girls can be properly diagnosed based upon ONE symptom mostly present in BOYS?) Yeah... didn't think so!
When Iraq was 5 we took her to a different specialist in a different town. A female specialist. A female specialist who did her homework on the difference between boys and girls. To start, she gave us a diagnosis of PDD or Pervasive Developmental Disorder which is a rather non-committal term for a person showing some symptoms of being in the spectrum. At least we were finally on to something!
It took 5 more doctors of different specialties (the same awesome female specialist mentioned above sent us all around town) and another year before we landed on an diagnosis of Aspergers! Whew! What a ride!
Of course now Iraq is 7-years-old and we can really see the ASD behaviors now we know more about the diagnosis and what to look for.
atypical use of toys - lining up instead of make-believe play
The moral of this story is that if you are not satisfied with one doctor's opinion, get 10 more! Don't assume a doctor knows everything - especially as new information comes out every day. Don't assume that if you read a list of symptoms that any females were used in the study that determined what those symptoms were.
Social issues
After all - it has taken us this long to make it publicly known that the symptoms of the leading killer of women - heart disease - are different in women than they are in men. Autism is not a leading killer, so it is safe to assume we still have a long way to go before autism spectrum disorders are properly diagnosed in girls as quickly as they are in boys.
Like my blog? Vote for this blog at TopMommyBlogs!
*
Awesome! I agree with you! I like what Tony Attwood says, that girls are less likely to be diagnosed than boys because of how girls are socialized, also girls are more likely to developing masking/coping skills than boys. We also had problems having our daughter diagnosed. First, it was called Generalized Anxiety Disorder, then Non-Verbal Learning Disorder (because she was "too social"), finally, just before she was 7 (she's 11 now) she received the diagnosis of Asperger's, and Sensory Processing Disorder. Good job, that you kept going until you found the correct diagnosis.
ReplyDeleteWonderful post. It's given me a lot to think about.
ReplyDeleteI LOVE this post!!!!!
ReplyDeleteAs you already know, I HATE being told that I "don't seem autistic"
Autistic adults aren't identical to autistic children - WHO KNEW?!!?
Also, Iraq ROCKS! Just putting that out there :)
Very interesting. All of those "symptoms" sound like me as a child. Reading up on asperger's in adults. Been diagnosed as having depression, anxiety disorder and even bipolar but the bipolar doesn't fit. As well as numerous other things throughout the years. Very enlightening. Thanks for sharing.
ReplyDeleteFantastic post. Very eye-opening.
ReplyDeleteI have a son with "classic autism": The doctors and specialists all knew what they were looking at, and despite that professional acknowledgement and recognition, we still suffered with a lot of people who thought he was simply badly behaved, or our parenting sucked, or he'd catch up eventually...
It must be so frustrating when even the specialists miss the signs and you have to fight like that just to get the diagnosis correct in the first place.
Just found your blog. I have a 13 year old daughter with Asperger's Syndrome ( amongst many other things )...I find it difficult to find others who have girls...I am hooked up with alot of supports, which I love...but most of the population is boys....Like your blog...Hope you will check mine out too..:)
ReplyDeleteI'm 31 years old and didn't know what was "wrong" with me until just last year. I spent my whole childhood being told that I was just shy and that I would "grow out of it". Then when I got to college and I was still having problems I started to worry that I might have a mental illness and became so depressed about my situation that I almost killed myself. I can only imagine how much better my childhood would have been if the trait of Asperger's in girls had been more widely known back then.
ReplyDeleteI love this post! I'm 13 years old... Never been diagnosed with Asperger's but I fit into a lot of the symptoms. I'm very shy, hate introducing new things into my days, sensitive to noises, lack of eye contact, etc... I line all the icons on my phone up into a certain order (usually by color). I just don't know how to suggest that I may have it to my parents who think that I am oversensitive and a little bit dramatic/over-analytical.... Anyways I love your blog!
ReplyDeleteAnonymous - I'm in my mid 40's and my own mom doesn't believe I'm an Aspie - LOL! We are all special and unique, and none of us can be pigeon-holed with one absolute set of criteria.
DeleteTry talking to your parents (who may believe you're just being a hypochondriac, hormonal, alarmist - whatever). On the other hand, they may listen and do some research of their own. Either way, if YOU believe you fit the criteria, use it as a jumping off point - a starting point. Knowing what your weaknesses are gives you strength. You know what you have to work on, and you will get to know the situations that make you uncomfortable. Watch how other people deal with certain situations, and emulate those you think make the most sense. Get ear plugs to go see fireworks or rock concerts and dark sunglasses can help reduce the amount of stimuli hitting your brain in stores or theme parks. Also - push yourself out of your comfort zone as much as you can! It will help you grow as a person.
And don't worry - it gets easier!
I adore this blog! My two brothers have aspergers 16/11 and my mother said that I'm likely to have as too. I match the criteria and I filled a form out and I'm extremelly likely to have as! I'm 14 by the way.
ReplyDeleteMy daughter is 16 and headed straight for an Aspergers DX...finally. She has a very high IQ they said, but she is failing badly at school. I would love to home school her...just to get her caught up but her few friends are so important to her. She is very smart, very sweet, very shy, very focused. Everyone likes her, but she isn't close to any of her peers...even the friends she's had for 7 years, she doesn't spend time with them outside of school. They are all very protective of her innocence and she thrives on that...that may hold her back later in life though. Learning as we go and info like this helps! Thanks. ~ very blessed
ReplyDeleteI am a girl with Asperger's and very often people tell me that I know the "social rules" too well to have Asperger's. I've explained time and again that I have studied books on communication and social interaction (I read a lot as a child--more than I do now--and a lot of them were instructional and psychological themed books), and I relied very heavily on my friends to take the lead in a social situation so that I could fit in.
ReplyDeleteGood for you for being a dedicated parent to your lovely children. I'm glad I came across your blog. It made my night.
Thank you so much for sharing! It helps me a lot, I am the mother of a 15 year old girl with asperger, diagnosed just a few moths ago. There is so much for us parents to learn and understand, reading stories from other parents with girls with asperger is a great help and support for me.
ReplyDelete