Resources for Women with Aspergers Syndrome

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swordrat32
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25 Apr 2019, 7:50 pm

I found this resource very helpful as a newly diagnosed person struggling with where I "fit in." It's 20 different women on the spectrum writing about themselves, and it gives you an idea of some of the breadth of experiences out there: https://www.aane.org/hiding-plain-sight-words/



ASPartOfMe
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25 Jun 2019, 3:36 am

Inside Felicity House, a New York social club for women with autism

Quote:
o outsiders, Felicity House, located in Manhattan’s upscale Flatiron District neighborhood, might look a bit like a boutique hotel, or even the Wing, the Instagram-worthy women’s coworking space with branches in New York, Washington, and other cities.

Visitors are shown to a spacious waiting room with a fireplace, plush rugs, and high ceilings with crown molding. Up a flight of stairs are common areas furnished in soothing neutral tones. On a recent spring morning, tables were decorated with vases of fresh tulips.

But Felicity House isn’t a hotel. It’s a social club for women with autism, and its rooms and programming were all designed with input from its more than 150 members. Because people with autism can be sensitive to noise, special wall materials block nearly all the sound from the New York streets. Fidget toys, which some people with autism use to relieve stress or aid concentration, are in every room.

Members, who pay nothing for the club’s services, can bond with others over interests, such as movies or Legos — one group has built an intricately detailed Lego town in the art studio — or chat with people who share their experiences.

There’s also a quiet lounge where visitors can go if they don’t feel like talking. It’s akin to “the quiet car on the train,” says executive director Beth Finkelstein.

If visitors want to be completely alone, there’s a wellness room where they can be by themselves. There, they might flip through a collection of notes from other members explaining how they like to calm down. (“I like to take a deep breath, hold it for seven seconds and release,” one reads.)

“There is really something to be said about being in a place where you don’t need to translate yourself,” said Christine, a 29-year-old member of the house. (To maintain their privacy, all members interviewed by Vox asked that only their first names be used.) “Walking into Felicity House was weirdly like walking into a place where everyone spoke my language.”

For decades, researchers and advocates say, autism has been seen by the public and even some doctors as a disability that primarily affects boys and men. As a result, support groups for women with autism are few and far between. Clubs geared toward socializing, rather than treatment or behavior modification, are rarer still.

Members and others connected to Felicity House say that women with autism can be doubly marginalized — because of their autism and because of their gender. They believe the club could offer a lesson to the wider world in making women with autism feel welcomed rather than left out.

In general, resources for adults with autism are scarce, Bal said, and those for women are even scarcer.

“A place like Felicity House is totally unique,” she said. “It’s really powerful to offer somewhere where the whole group is focused on just women.”

Felicity House members can attest to that. “In college, I was the only woman in my life-skills group” for autistic people, Andrea, a 23-year-old member, wrote in an email. “I stopped going after a few weeks because I couldn’t connect.”

Women-only groups geared to people without autism didn’t feel like a fit either. Andrea tried joining groups for women in business when she was in college, but, she said, “They weren’t accommodating to my needs, and I was afraid to bring anything up for fear of being stigmatized. That left me feeling left out of both parts of my identity.”

“So much of these types of organizations is networking, something that does not come naturally to me,” she said.

When there are resources for women, they’re typically “very clinical in nature — there’s a focus on doing things to and for us, on observing us or responding to us or modifying us in some way,” said Julia Bascom, executive director of the Autistic Self Advocacy Network and a member of the Felicity House advisory board.

Felicity House instead offers members a place to hang out, to go to a barre class, work on a painting in the well-stocked art studio, or take a moment in one of the quiet areas.

still, there’s a widespread assumption among the American public “that autism is a white man’s, and specifically white boy’s, thing,” said Lydia X.Z. Brown, a community organizer and fellow at the Bazelon Center for Mental Health Law.

“The clinical literature and even widespread media coverage of autism all assumes that autistic people are white men who are interested in trains, math, and computers, and if you don’t fit that profile, then you’re probably not really autistic,” said Brown, who is autistic.

Felicity House was founded by Audrey Cappell, a philanthropist, writer, and activist who is on the autism spectrum. Cappell prefers to avoid the spotlight and so declined to be interviewed, but Finkelstein, Felicity House’s executive director, said Cappell had been to autism meetings and support groups “where there could be 20 men there and two women.”

Cappell had a lot of resources and support from her family and others but knew that “not everybody who was a woman with autism had the same,” Finkelstein said. So she convened three support groups: one for professionals who work with women with autism, one for parents, and one for women with autism.

The most important feedback Cappell got from the women with autism was, “I have never been in a room full of other women with autism before; this is a first for me; when are we meeting again?” Finkelstein said. A focus group of 15 women met twice a month for several years before Felicity House opened its doors in 2015, and many are still members.

Today, Felicity House is open to any woman with a documented autism diagnosis. If people believe they have autism but do not have a diagnosis, Felicity House can help find a clinician. Membership and all events are free (Felicity House is a private foundation), and anyone who identifies as a woman, including trans women, can join. Felicity House has nonbinary and gender-nonconforming members as well.

A suggestion box is placed prominently in one of the common rooms, and the staff hosts regular town halls to hear from members. Every event starts with a meal, so members have one less thing to think about when planning their days. Staff also distribute agendas with clear descriptions of events, as well as rules and expectations, including whether breaks are allowed.

Cappell, Bascom said, “wanted to solve a problem she saw in her community, and it’s guided by autistic advisers and shaped by feedback from its members. That’s why it works so well.”

Cappell, Bascom said, “wanted to solve a problem she saw in her community, and it’s guided by autistic advisers and shaped by feedback from its members. That’s why it works so well.”

Felicity House may offer lessons for the broader world. If others were mindful of the need among some autistic people for straightforward instructions, it would be “life-changing,” Andrea said.

“One of my main anxieties with new experiences is not knowing what to expect,” she added. “At Felicity House, I always know what will be available to eat, where a quiet space to decompress is, how long the event will last, etc.”

In recent years, some public places like airports and stadiums have begun offering quiet rooms and other resources for people on the spectrum. But there’s a lot of need for improvement, Bascom said. “Even many autism organizations aren’t making a serious attempt at this yet.”


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“My autism is not a superpower. It also isn’t some kind of god-forsaken, endless fountain of suffering inflicted on my family. It’s just part of who I am as a person”. - Sara Luterman


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13 Jul 2021, 10:01 pm

Autistic Girls and Women - Prof Tony Attwood and Dr Michelle Garnett

5 hour and 31-minute course in 5 parts $135 US dollars to rent


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DSM 5: Autism Spectrum Disorder, DSM IV: Aspergers Moderate Severity

“My autism is not a superpower. It also isn’t some kind of god-forsaken, endless fountain of suffering inflicted on my family. It’s just part of who I am as a person”. - Sara Luterman


White_Feather
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25 Dec 2021, 2:13 pm

Can somebody post an updated list, most of the links are gone now.



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03 May 2022, 12:23 pm

Book by Autistic Claire Jack Ph.D. Autism: Accepting and Embracing Autism Spectrum Disorder as You Move Toward an Authentic Life
5 Things Autistic Women Wish They Knew When They Were Young

Quote:
You’re different—and that’s Ok

You need to shape your life according to your needs.

Your relationship needs may not fit “the norm

You can be yourself.

You can ask for help


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Professionally Identified and joined WP August 26, 2013
DSM 5: Autism Spectrum Disorder, DSM IV: Aspergers Moderate Severity

“My autism is not a superpower. It also isn’t some kind of god-forsaken, endless fountain of suffering inflicted on my family. It’s just part of who I am as a person”. - Sara Luterman


silverlinings1069
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12 Jan 2024, 11:37 am

Thank you for this resource. This is amazing. I did try some of the links posted and they did not work. But the books...yay!



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12 Jan 2024, 1:55 pm

Agrees with above post,, wanted to thank you for the list of available research ... :D :D :D :D


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Harmonie
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14 Jan 2024, 8:29 pm

It's sad that many of these links (understandably) don't work anymore. =( However, I appreciate the resources! I will definitely look into the books - hopefully some of them have been released as audiobooks, I listen to those at work!


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Jakki
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14 Jan 2024, 8:38 pm

And Thank you from me Too. :D


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silverlinings1069
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15 Jan 2024, 9:06 am

Thank you for the resources. This has been a very good beginning to figure out my new reality.