The female experiences of Autism between ages of 17 and 25.

[hope17]

Hi. I am an undergraduate bsc. Student studying Childhood Studies.

I am creating a research project for my dissertation to amplify the voices and experience of Autistic young women. I want to gain a deeper understanding of the female perspective of ASD and think it’s crucial we get recognition for our community.

If you are passionate about sharing your unique journey, I would like to invite you to answer a questionnaire. I will as a series of questions (10) about your experiences and perspectives of Autism Spectrum Disorder.

For more information, please do not hesitate to contact me and I will provide all relevant information needed

 

[marc_101]

One favor to ask, but ignore it if it's not the focus of your work: I'm male, and I would have discovered my own ASD much earlier if I had understood that the autism experience for some males is very similar to that of females. I mask very well and people and social relationships are one of my special interests. I identified a lot with memoirs written by women about the female experience. I think many males can identify with that narrative. Many do not fit the ASD male stereotype either. So the favor is, don't ignore the males that don't fit the ASD male stereotype.

 

[hope17]

One favor to ask, but ignore it if it's not the focus of your work: I'm male, and I would have discovered my own ASD much earlier if I had understood that the autism experience for some males is very similar to that of females. I mask very well and people and social relationships are one of my special interests. I identified a lot with memoirs written by women about the female experience. I think many males can identify with that narrative. Many do not fit the ASD male stereotype either. So the favor is, don't ignore the males that don't fit the ASD male stereotype.

Hi, thank you for the input it is really appreciated however this isn't the focus of my work. I understand that a lot of males will relate to a 'high functioning' subtype of autism (hate to use that phrase), however I am investigating whether their actually is a female phenotype through a reflective inquiry or, whether girls have just been missed through high levels of masking. (again i understand this can be applicable to both genders). However, looking at statistics there is a discrepancy in diagnosis. A significant gender bias in ascertainment, with a ratio of up to 15:1, has been established due to the predominant use of male samples in key studies or diagnostic methodologies. The methods and preconceptions guiding ASC diagnoses are primarily constructed around male presentations, creating a substantial gap in our understanding of how many girls may possess unrecognised autistic characteristics. While the high male to female ratio reflects aspects of the aetiology of ASC, girls who scored highly on a screening test for autistic-traits were less likely than equivalent scoring boys to meet clinical diagnostic criteria for ASC; making it conceivable that there are biases in perception, assessment, and/or diagnosis of ASC for females. Consequently, females with ASC symptomatology have been left undiagnosed or been misdiagnosed with different mental health conditions.

 

[marc_101]

I understand. If it's only masking, comparing male and females who mask would provide some clues

Check out that ratio. It's not 15:1. At least in the US, it's closer to 4:1 or 3:1 now, but not sure. I image that varies country to country and by time.

 

[hope17]

I understand. If it's only masking, comparing male and females who mask would provide some clues

Check out that ratio. It's not 15:1. At least in the US, it's closer to 4:1 or 3:1 now, but not sure. I image that varies country to country and by time.

I know. Unfortunately as this is only an undergraduate research dissertation I don't have the resources or time to be able to do so. and as an Autistic female myself, I wanted to be able to fully engage with the topic i was researching hence the main focus of females. I'm from the UK - my source for that would be Lai et al, 2015 who actually did compare males and females. (Lai MC, Lombardo MV, Pasco G, Ruigrok AN, Wheelwright SJ, Sadek SA, MRC AIMS Consortium A behavioral comparison of male and female adults with high functioning autism spectrum conditions. PLoS ONE. 2011;6(6):e20835. doi: 10.1371/journal.pone.0020835 )

 

[marc_101]

Thanks. I took a look at that paper. They don't investigate the ratio, but they cite other studies that do. None of the studies mentioned has a 15:1 ratio; the largest is 5.5:1:

"The initial description of children with “autistic disturbances of affective contact” by Leo Kanner described 8 boys and 3 girls [8]. Similarly, the report on “autistic psychopathy” by Hans Asperger concerned 4 boys and no girls [9]. Although these were small clinic samples, this male bias was also seen in the early epidemiological studies of classic autism with concurrent intellectual disability, where the male∶female ratio was 3–4∶1 [7], [10], [11], [12], [13]. Among those with low IQ, the sex ratio decreased to 2∶1 [10], [14] but was nevertheless still present. Despite better recognition of ASC today, these sex ratios and their relation to intellectual ability are consistent with those reported 30 years ago. The sex ratio for individuals with average intelligence is 5.5∶1, but 1.95∶1 in those with intellectual disability [6]. However, these studies may have underestimated the number of females with ASC if they have a “non-male-typical” presentation, and if females with undiagnosed ASC make more effort to camouflage their difficulties [15], [16], [17], [18], [19]. Thus, studies comparing the behavior of males and females with ASC are still needed."

Anyhow. Good luck with the project

 

[hope17]

Thanks. I took a look at that paper. They don't investigate the ratio, but they cite other studies that do. None of the studies mentioned has a 15:1 ratio; the largest is 5.5:1:

"The initial description of children with “autistic disturbances of affective contact” by Leo Kanner described 8 boys and 3 girls [8]. Similarly, the report on “autistic psychopathy” by Hans Asperger concerned 4 boys and no girls [9]. Although these were small clinic samples, this male bias was also seen in the early epidemiological studies of classic autism with concurrent intellectual disability, where the male∶female ratio was 3–4∶1 [7], [10], [11], [12], [13]. Among those with low IQ, the sex ratio decreased to 2∶1 [10], [14] but was nevertheless still present. Despite better recognition of ASC today, these sex ratios and their relation to intellectual ability are consistent with those reported 30 years ago. The sex ratio for individuals with average intelligence is 5.5∶1, but 1.95∶1 in those with intellectual disability [6]. However, these studies may have underestimated the number of females with ASC if they have a “non-male-typical” presentation, and if females with undiagnosed ASC make more effort to camouflage their difficulties [15], [16], [17], [18], [19]. Thus, studies comparing the behavior of males and females with ASC are still needed."

Anyhow. Good luck with the project

Hi, Apologies that’s actually my bad I sent you the wrong paper - you are welcome to look yourself the author is Lai Meng-Chuan. Thanks for your input though - you should have a look for students looking for male participants, if you go into websites like ambitious about autism they recruit people all the time. I can send you some links if you’d like, Im sorry I can’t help you here.

 

[Misty Avich]

My mental health issues peaked at ages 17-24. I became a nightmare to live with, and kept having rage outbursts (verbal only, not violent). I just couldn't help myself, even though I knew what I was doing, I still had to let the built up anger and frustration I had out somehow. I just didn't know what else to do.
Loneliness was the cause of it. The years between age 17-24 are supposed to be the funniest years of your adult life, but mine were spent sitting alone in my room and maybe meeting up with one or two friends sometimes in the day, which was good, but compared to my peers I was lonely. I was in that position between not being too bothered about going out clubbing but feeling guilty by society for not going out clubbing (peer pressure). I got myself worked up and angry over it, and beat myself up... emotionally and physically.

It made it worse when one day when I was coming up for 21 I received an advertisement in the mail of a venue to plan a 21st birthday party. My mum said that was pointless to me because I had "no friends". That really made me hate myself so much, and I flew up in a rage, hitting myself in the head and screaming "I HATE BEING ME! I HATE AUTISM! I WANNA BE NORMAL!!!!!!!" It was terrible. And I think it's quite insensitive to send advertisements of party venues in the post, as it can be a horrible reminder of how lonely some people are compared to most young people who'd have no trouble rounding up friends for a big 21st birthday celebration.

 

[hope17]

My mental health issues peaked at ages 17-24. I became a nightmare to live with, and kept having rage outbursts (verbal only, not violent). I just couldn't help myself, even though I knew what I was doing, I still had to let the built up anger and frustration I had out somehow. I just didn't know what else to do.
Loneliness was the cause of it. The years between age 17-24 are supposed to be the funniest years of your adult life, but mine were spent sitting alone in my room and maybe meeting up with one or two friends sometimes in the day, which was good, but compared to my peers I was lonely. I was in that position between not being too bothered about going out clubbing but feeling guilty by society for not going out clubbing (peer pressure). I got myself worked up and angry over it, and beat myself up... emotionally and physically.

It made it worse when one day when I was coming up for 21 I received an advertisement in the mail of a venue to plan a 21st birthday party. My mum said that was pointless to me because I had "no friends". That really made me hate myself so much, and I flew up in a rage, hitting myself in the head and screaming "I HATE BEING ME! I HATE AUTISM! I WANNA BE NORMAL!!!!!!!" It was terrible. And I think it's quite insensitive to send advertisements of party venues in the post, as it can be a horrible reminder of how lonely some people are compared to most young people who'd have no trouble rounding up friends for a big 21st birthday celebration.

Hi Misty, I'm sorry you have felt like this for a period of your life - it must've been incredibly difficult to navigate all those emotions, and feelings. Emotions and feelings i very much resonate with myself - particularly your feelings around your 21st birthday. i'm sorry your feelings weren't validated in that situation, if there is any reassurance in how you feel now i feel exactly the same. i often have mental battles about my autism sometimes i love it, and it helps me understand me but most of the time it makes me feel so other! i feel so different particularly from girls my age, as a 22 year old there are now so many expectations of what i should be doing, or where i should be going but some days i can barely remove myself from my bed! I have also made the mistake of trying to 'persevere' in going out clubbing or to events, however i tend to make me overcompensate for the anxiety around the social situations and maybe influenced me to do unhealthy actions to make me feel normal, or fit in with my neurotypcial peers. I want you to know regardless of the expectations places upon you, this is your life and you are the main controller! And if youd like a friend youve made one here this comment has been so valuable, and is exactly what im looking for in terms of experiences growing up neurodivergent (i see you dont like the A word).

 

[jsilver256]

I'm not 17-25, but if you're interested in my experiences from when I was, I'll be happy to answer your questions. If not, no biggie and good luck with your project.

 

[Misty Avich]

Hi Misty, I'm sorry you have felt like this for a period of your life - it must've been incredibly difficult to navigate all those emotions, and feelings. Emotions and feelings i very much resonate with myself - particularly your feelings around your 21st birthday. i'm sorry your feelings weren't validated in that situation, if there is any reassurance in how you feel now i feel exactly the same. i often have mental battles about my autism sometimes i love it, and it helps me understand me but most of the time it makes me feel so other! i feel so different particularly from girls my age, as a 22 year old there are now so many expectations of what i should be doing, or where i should be going but some days i can barely remove myself from my bed! I have also made the mistake of trying to 'persevere' in going out clubbing or to events, however i tend to make me overcompensate for the anxiety around the social situations and maybe influenced me to do unhealthy actions to make me feel normal, or fit in with my neurotypcial peers. I want you to know regardless of the expectations places upon you, this is your life and you are the main controller! And if youd like a friend youve made one here this comment has been so valuable, and is exactly what im looking for in terms of experiences growing up neurodivergent (i see you dont like the A word).

That is so nice of you. I'll be your friend too.
The way I see it, there seems to be two types of spectrumers and ADHDers (aged between 17 and 25); those who are shut-ins, and those who go out more with their peers but get involved with alcohol and drugs. Not sure if there are anyone in between on the spectrum, there probably are of course. But in my experience of being on autism sites, this is the pattern I see a lot. I was in the shut-in group, as alcohol and drugs never appealed to me. I'm glad about it in a way, but if I was brave enough to abuse my body then I probably would have had more of a social life.

I'm nearly 34, so I'm more wiser and it does get easier when you get older. Peer pressure isn't so demanding, and less people in your peer group go out clubbing. The only thing I get depressed about now is the fact that everyone around me are having babies and it makes me feel like I'm not accomplishing anything. I think peer pressure sometimes dictates having a baby (not always though, as I do know a lot of people want children as a choice of their own, but there are some girls out there who literally have a baby just because they're in a relationship and all their friends are having children).

But anyway, if you have any questions I'll be happy to answer them.