You are fascinating. I appreciate the detailed explanation of your life. The misdiagnosis is incredible. I’m 66 and was a female engineer (male dominated field) so I understand that people treat us differently with the same “symptoms” (behaviors) as boys/men. You are amazing to have figured out so much and I know it will help others. Thank you. I look forward to further installments
Maia is somewhat lucky. You are a year younger than that loved one of mine. Back when you were growing up, it didn’t really cross anyone’s mind that females could be autistic or on the AS. AT least when I started reading in this area, some 20 years ago, one of the symptoms they looked for for autism was late language development. Except that that is the case much more for males, than females. No doubt, some doctors, along the way, ran their checklist with Maia, saw that she was gifted with language, and discarded Autism as a diagnosis as a result.
As he explained it, females on the ASD are often missed because, externally, they just appear more male mentally. That’s why I asked him for some books on women on the ASD.
The book of his that got me going was “ The Essential Difference: Men, Women and the Extreme Male Brain”. Penguin/Basic Books. 2003. ISBN 978-0-7139-9671-5. It expounds on his empathising–systemising (E–S) theory, where Autism and ASD are a symptom of an extreme systemizing brain.
Greatly enjoyed. If you haven’t (I suspect that you have from your use of the word “systemizing”), you (all) should read the works of Dr (Sir) Simon Baron-Cohen, head of the Autism lab at, I believe, Cambridge. In one of his books, he mentioned that ASD presents differently in females, and, is much harder to diagnose as a result. I asked him for some books on the subject, and he kindly obliged. A light went off in my head after reading them. A loved one now made sense. Which is good because I can take remedial steps, in case of, for example, over-stimulation.
Her story was somewhat different from yours. She was in braces at a young age, because she was pigeon toed and flat footed. Didn’t work, so eventually her mother threw them away, and put her in toe shoes - at maybe. 3-4. That did work. Got rated as Retarded because she wouldn’t talk in school. She was plenty verbal at home, but had nothing to say to teachers who refused to pronounce her name correctly. Ended up in Special Ed, for a year, and hated the boys pulling her hair all the time. So vowed to get out of school ASAP. Graduated HS at 15, took a year at floral school, before she was allowed to start college.
Comparing you to her, one of the things that jumped out at me is how different the savant abilities are with different people on the ASD. She isn’t the voracious reader that you are, but is a world class colorizer. Sped through school with a photographic memory. Was a top dancer and model in college, but could never comfortably let a guy put her up in the air, which is required for prima ballerinas.
Mentioning scripts, it got me thinking. A decade or two ago, I mentioned to her that women bond by complimenting each other. It didn’t really matter what you complimented them on. So now, it seems like she can’t walk by strange women without complimenting them on what is to me, the stupidest stuff. It works.
Finally, she can detect autism and ASD at 20 feet anymore. No doubt, you probably can too by now. She just has the advantage of living with it for 40 more years than you have.
What an incredible journey! It amazes me that nobody recognised your scripts as symptoms of ASD . I'm no professional but I do interact with autistic people and the verbal individuals all use "scripts", even the males. These tend to be very formal and often don't "fit" with the general conversation - they can quickly become monologues (which can often be very educational). The infamous disruptive behaviour of autistic people tends to occur when they are overstimulated, exhausted or extremely frustrated.
I still remember my father looking at my two year old daughter and saying “what two year old uses the word ________(can’t remember the actual word)______? And me saying “this one.” It never occurred to me that she was just imitating the adults in her life. A few years later our family was on vacation and my husband kept having to go get her and bring her back to him when he would find her completely mesmerizing a group of twenty somethings at the pool who thought she was the coolest and funniest kid they had ever met.
That rings a bell. I have had some lovely conversations with young autistic kids. They love sharing their expertise and they certainly know a lot They are also very, very polite.
Thankyou for your writing Maia. I'm in my 40s, and a little while ago, after a fair bit of reading and many podcasts, my younger sister announced to me that she thought she has ADHD. And - that I'm autistic. This sounds like excessive naval gazing - except... She took a friends' ADHD stimulant medication and felt calm and 'normal'. And as for me - so much of your essay resonates. I see your obsession with brain tumors, and match it with 'bog bodies'. Not a particularly common interest for any child, let alone a 6 year old girl. I have always understood animal body language and how not to spook them much better than people. I learned to speak early and very clearly - unusually so. But I spoke 'at' people, not with them. When I was 4, I used to answer the phone at home, taking orders from customers of my parent's farm. I couldn't write down the orders - but I was trusted to remember. I learned to read very early and voraciously. I ate apricot jam sandwiches for my school lunches for nearly 2 years straight in primary school. I was a good student, but I found other kids a mystery. I gravitated to boys and played like a boy in primary school. That didn't work in High school.
Long story short, I'm now a palliative care clinical nurse consultant. Caring for the dying, having the sensitive conversations. On the surface, it sounds like a very strange place to find someone who maybe doesn't excel at interactions with other people, lol. But - in palliative care we deliberately learn how to communicate, and a concept called 'cognitive empathy'. Learning to understand another person's point of view - without engaging your emotions so much, so you can help someone without being paralysed by the fear and grief of those affected. I find the subject fascinating and not just useful at work. And I'm good at what I do. People can tell me the inner fears that they might shy away from telling someone who reacts more. And I don't assume I know how anyone is feeling. Respectful curiosity, but not small talk where it's not wanted. I can be with someone, help them in the shower and not talk at all, if they need quiet. And I've met so many people who at least have autistic traits, of all ages. Pain and suffering looks different in the neurodiverse. This isn't well understood yet. Your writing helps understanding of the autism 'experience'. Thankyou.
Thank you Maia. Reading you has the effect on me of parental emotional regulation. You are spot on about our daughter. She didn't qualify as having ASD although she is gifted and socially awkward. You helped me a lot to have hope and accept, at least for now, what is happening without giving up hope after two years estrangement.
Maia, have you ever considered writing (or more accurately “re-writing”) your essays without the references to transgender stuff? I’m wondering because I’d love a starting point to dialogue with my daughter on the topic of autism but as you’ve noted, sending her anything about the transgender topic is less than productive. I think she would relate to your story. Just a thought.
You are fascinating. I appreciate the detailed explanation of your life. The misdiagnosis is incredible. I’m 66 and was a female engineer (male dominated field) so I understand that people treat us differently with the same “symptoms” (behaviors) as boys/men. You are amazing to have figured out so much and I know it will help others. Thank you. I look forward to further installments
Maia is somewhat lucky. You are a year younger than that loved one of mine. Back when you were growing up, it didn’t really cross anyone’s mind that females could be autistic or on the AS. AT least when I started reading in this area, some 20 years ago, one of the symptoms they looked for for autism was late language development. Except that that is the case much more for males, than females. No doubt, some doctors, along the way, ran their checklist with Maia, saw that she was gifted with language, and discarded Autism as a diagnosis as a result.
That tracks
Here is the Wikipedia link for Baron-Cohen. https://en.m.wikipedia.org/wiki/Simon_Baron-Cohen
As he explained it, females on the ASD are often missed because, externally, they just appear more male mentally. That’s why I asked him for some books on women on the ASD.
The book of his that got me going was “ The Essential Difference: Men, Women and the Extreme Male Brain”. Penguin/Basic Books. 2003. ISBN 978-0-7139-9671-5. It expounds on his empathising–systemising (E–S) theory, where Autism and ASD are a symptom of an extreme systemizing brain.
Greatly enjoyed. If you haven’t (I suspect that you have from your use of the word “systemizing”), you (all) should read the works of Dr (Sir) Simon Baron-Cohen, head of the Autism lab at, I believe, Cambridge. In one of his books, he mentioned that ASD presents differently in females, and, is much harder to diagnose as a result. I asked him for some books on the subject, and he kindly obliged. A light went off in my head after reading them. A loved one now made sense. Which is good because I can take remedial steps, in case of, for example, over-stimulation.
Her story was somewhat different from yours. She was in braces at a young age, because she was pigeon toed and flat footed. Didn’t work, so eventually her mother threw them away, and put her in toe shoes - at maybe. 3-4. That did work. Got rated as Retarded because she wouldn’t talk in school. She was plenty verbal at home, but had nothing to say to teachers who refused to pronounce her name correctly. Ended up in Special Ed, for a year, and hated the boys pulling her hair all the time. So vowed to get out of school ASAP. Graduated HS at 15, took a year at floral school, before she was allowed to start college.
Comparing you to her, one of the things that jumped out at me is how different the savant abilities are with different people on the ASD. She isn’t the voracious reader that you are, but is a world class colorizer. Sped through school with a photographic memory. Was a top dancer and model in college, but could never comfortably let a guy put her up in the air, which is required for prima ballerinas.
Mentioning scripts, it got me thinking. A decade or two ago, I mentioned to her that women bond by complimenting each other. It didn’t really matter what you complimented them on. So now, it seems like she can’t walk by strange women without complimenting them on what is to me, the stupidest stuff. It works.
Finally, she can detect autism and ASD at 20 feet anymore. No doubt, you probably can too by now. She just has the advantage of living with it for 40 more years than you have.
Wow. That’s fascinating. Thank you so much for sharing
Thank you for sharing this.
What an incredible journey! It amazes me that nobody recognised your scripts as symptoms of ASD . I'm no professional but I do interact with autistic people and the verbal individuals all use "scripts", even the males. These tend to be very formal and often don't "fit" with the general conversation - they can quickly become monologues (which can often be very educational). The infamous disruptive behaviour of autistic people tends to occur when they are overstimulated, exhausted or extremely frustrated.
Probably because half of them were translated from another language into English, these experts couldn’t recognize it 😂
🤓 Yes, that makes sense
I still remember my father looking at my two year old daughter and saying “what two year old uses the word ________(can’t remember the actual word)______? And me saying “this one.” It never occurred to me that she was just imitating the adults in her life. A few years later our family was on vacation and my husband kept having to go get her and bring her back to him when he would find her completely mesmerizing a group of twenty somethings at the pool who thought she was the coolest and funniest kid they had ever met.
That is fascinating
That rings a bell. I have had some lovely conversations with young autistic kids. They love sharing their expertise and they certainly know a lot They are also very, very polite.
Thankyou for your writing Maia. I'm in my 40s, and a little while ago, after a fair bit of reading and many podcasts, my younger sister announced to me that she thought she has ADHD. And - that I'm autistic. This sounds like excessive naval gazing - except... She took a friends' ADHD stimulant medication and felt calm and 'normal'. And as for me - so much of your essay resonates. I see your obsession with brain tumors, and match it with 'bog bodies'. Not a particularly common interest for any child, let alone a 6 year old girl. I have always understood animal body language and how not to spook them much better than people. I learned to speak early and very clearly - unusually so. But I spoke 'at' people, not with them. When I was 4, I used to answer the phone at home, taking orders from customers of my parent's farm. I couldn't write down the orders - but I was trusted to remember. I learned to read very early and voraciously. I ate apricot jam sandwiches for my school lunches for nearly 2 years straight in primary school. I was a good student, but I found other kids a mystery. I gravitated to boys and played like a boy in primary school. That didn't work in High school.
Long story short, I'm now a palliative care clinical nurse consultant. Caring for the dying, having the sensitive conversations. On the surface, it sounds like a very strange place to find someone who maybe doesn't excel at interactions with other people, lol. But - in palliative care we deliberately learn how to communicate, and a concept called 'cognitive empathy'. Learning to understand another person's point of view - without engaging your emotions so much, so you can help someone without being paralysed by the fear and grief of those affected. I find the subject fascinating and not just useful at work. And I'm good at what I do. People can tell me the inner fears that they might shy away from telling someone who reacts more. And I don't assume I know how anyone is feeling. Respectful curiosity, but not small talk where it's not wanted. I can be with someone, help them in the shower and not talk at all, if they need quiet. And I've met so many people who at least have autistic traits, of all ages. Pain and suffering looks different in the neurodiverse. This isn't well understood yet. Your writing helps understanding of the autism 'experience'. Thankyou.
Wow thank you for your beautiful description of your life story ❤️
Thank you Maia. Reading you has the effect on me of parental emotional regulation. You are spot on about our daughter. She didn't qualify as having ASD although she is gifted and socially awkward. You helped me a lot to have hope and accept, at least for now, what is happening without giving up hope after two years estrangement.
I’m so glad my essays can help you in this way ❤️❤️❤️
Woah, I read that first paragraph to my husband because it sounded like my daughter had written it!
Gracias Maia, escribes maravillosamente bien. Me sentí identificado en muchos pasajes de la lectura. Te mando un beso.
Maia, have you ever considered writing (or more accurately “re-writing”) your essays without the references to transgender stuff? I’m wondering because I’d love a starting point to dialogue with my daughter on the topic of autism but as you’ve noted, sending her anything about the transgender topic is less than productive. I think she would relate to your story. Just a thought.
Feel free to DM me