Morning #autismwomen pals. Here is my face, in case you want to say hi (I’m faceblind and find these immensely helpful!) in the one in the yellow check Cher Horowitz style dress and very happy to chat. ✌🏼
I will try and livetweet as much of #autismwomen as I can, and I’ll let you all know what talks I’m going to later on. Really excited!!
Nightmare journey to #autismwomen but I’m finally here in a seat, ready to hear @Girl_by_the_Aga and @CatrionaSScot open the conference.
I really love that #autismwomen has a badge system so people can indicate whether they want to talk or not. It’s so helpful. 🚦
So lovely to see @CatrionaSScot acknowledging people whose gender identity doesn’t match “woman” but due to society and medicine are affected in the same way. This non-binary interloper feels very welcomed. #autismwomen
.@Girl_by_the_Aga believes the more #autismwomen are seen and heard, the more they are understood, and is so happy to see their voices in the mainstream since her diagnosis in 2015.
Moving over to a talk about championing the voices of autistic women with @WillClinPsy @SarahBargiela and @robyn_steward. Robyn reminds us that gender is a spectrum so a whole cohort of people fall under the remit of this #autismwomen conference.
Wholeheartedly agree with @robyn_steward that maybe we should be moving away from binary genders as the markers for autism, and more towards specific presentation styles. Very much agree with this point. #autismwomen
.@robyn_steward is explaining the study design of the project, and saying to keep in mind when studies are designed you have to be very specific to answer a hypothesis. I will share the references to the work as we go. #autismwomen
Did you know autistic girls and women are less likely to receive an autism assessment (Loomes et al., 2017) or if they do )35 one, it is much later on average than equivalent men (Giarelli et al., 2009). #autismwomen
And when autistic women do receive an assessment, they are less likely to meet the current diagnostic criteria, compared to men who have the same level of autistic traits (Dworzynski et al.,2012, Russell et al., 2011). This is absolutely the experience of my peers. #AutismWomen
This talk is going to be discussing the “female phenotype”, which @robyn_steward suggested we need to rename as many men present this way too. Would be really interested to speak to researchers about how we move away from gendered language. #AutismWomen
The differences in the female autism phenotype can be summarised as:
- increased social motivation
- different special interests
- co-occurring behavioural difficulties
- camouflaging

.@WillClinPsy promises he’s trying not to head down a “men are from Mars, women are from Venus track” 😂 #autismwomen
On average, autistic girls and women are more interested in the social world (Hiller et al., 2014; Head et al., 2014) #autismwomen
I’m shook that Harry Styles is not on the special interests slide *nudges* @emilylinka. But wolves are represented @karamina!! #autismwomen
.@WillClinPsy highlights that an special interest in Justin Bieber or animals would be considered less strange than one in the District Line, or something more abstract. #autismwomen
There is a pattern of co-occurring mental health difficulties. 70% of autistics will meet the criteria for a mental health problem. Externalised behavioural problems appear more in boys and men; internalised more in women.

.@WillClinPsy highlights they are currently looking at eating disorders in autistic people, which appear more frequently in the female presentation. #autismwomen
As many of us know, camouflaging (changing our behaviour, imitation, suppression of stims deemed “undesirable”) is very common. For Stim, we had about 10 pitches on this exact topic — it is very intrinsic to many people’s experiences. #autismwomen
An emerging finding about camouflaging is that people who mask more also have higher rates of mental health problems. The pressure of the world to fit in has a tangible, measured effect on autistic people. #autismwomen
The study that @WillClinPsy, @SarahBargiela and @robyn_steward are discussing aimed to find out:
- what is thee female autistic phenotype from view of autistics
- how does it impact getting a diagnosis
- are there costs to a late diagnosis
For those interested, the full study is here. #autismwomen…
.@SarahBargiela also developed the research into a book called Camouflage. Great to see scientific research translated to useful, practical documents!

You can find it here, out Feb 2019.

Autistic women believe that their special interests are intrinsically linked to their social identity. #autismwomen
Being told “you’re not autistic” is a common experience for autistic women, even at the health service level. Medical processionals are failing to look at co-occurring mental health conditions as the superficial top layer of an autistic’s experience. #autismwomen
.@WillClinPsy highlights that the knowledge of what autism can look like needs to be broadcasted to teachers, care givers, GPs, not just autism specialists. Autistic people’s inklings are dismissed by these key people, who need to be aware. #autismwomen
One of the most important findings was that a high rate of participants had been sexually abused, and reflect that if they’d known about being autistic they might not have found themselves in dangerous situations. #autismwomen
May I recommend @robyn_steward’s brilliant The Independent Woman’s Handbook for Super Safe Living on the Autistic Spectrum. Every young autistic person needs a copy. #autismwomen…
Several women cited picking up accidental accents due to socialising, which those of you who’ve known me a long time remember my Scouse, Yorkshire and now Londonish accents.... #autismwomen
The wonder of social networks online was flagged — the beauty of communication that was just text meant autistic women didn’t have to monitor their bodies or movements or listen. It made friendships easier. (Pretty sure all of Twitter resonates with this) #autismwomen
.@robyn_steward reflects that 9/14 in this study had been sexually abused. A York Uni in Toronto did a study specifically on this, highlighting many autistic people’s passivity may mean they find it hard to leave safe situations. We must must must keep this in mind. #autismwomen
Ultimately, an autism diagnosis is a safeguarding issue. @robyn_steward reflects knowing that there is nothing wrong with them was freeing. It means people can make sense of their life and make adjustments based on that knowledge. #autismwomen
Sexual abuse is an uncomfortable but important reason for us to educate about female presentation widely, in order to try and protect vulnerable people. #autismwomen
Apologies for the annoying photo, but here are all the references from the talk (several I’ve highlighted in my thread) for those of you wanting to read the papers. #autismwomen
We’re into the questions, and @SarahBargiela highlights that autistic women she has met and worked with all have prior mental health diagnoses. #autismwomen
Question two highlighted an autism service that refuses to treat anxiety in autistics by citing its part of the condition. @robyn_steward quite rightly said they should read the DSM! Audience applauded. #autismwomen
.@robyn_steward reflects that some of these kids probably don’t remember what it’s like to not be anxious, even though it doesn’t have to be that way and medication can really make a difference to autistic people. #autismwomen
The study found a key part of people feeling themselves or at home was online communities of other autistic people. I definitely have found this, and I’m incredibly lucky to have so many IRL autistic pals too. #autismwomen
Question 3, a parent says her 7 year old discovered on the internet a tip that if you look at someone’s nose it looks like eye contact but isn’t. This is a trick that I have used for sure! #autismwomen
Q3 highlights that when we talk about binary gender, are we leaving behind boys with female presentation? @WillClinPsy says that the high rates of autism diagnosis going up and up is mostly led by boys still, but that we do need to be aware of this. #autismwomen
Q4 proposes that your personal stage of social communication level may influence diagnosis rate that could be more useful than looking just at gender, referencing an Attwood series. #autismwomen
Q5 asks how does she help their 4 year old grandchild socialise without developing issues. @robyn_steward says love them, encourage flexibility and boundary setting. Team work is important, even if friendship is not to them specifically. Teach her emotional language. #autismwomen
.@robyn_steward says to tell her she doesn’t have to be someone she isn’t, with specific examples, which I think is so important. #autismwomen
Many of the issues raised in this talk will be discussed in #StimBook, a book of essays, art and stories which we are crowdfunding through @unbounders. #autismwomen

Now the wonderful @mindtheflap and @SamAhern3 are talking about truth and misconceptions of autism. I love these guys! You may remember them from Are You Autistic? on Channel 4. #autismwomen
Some autism myths:
- Autism is just for boys
- Autism disappears at 18
- Autistic people lack empathy
- All autistics are the same
- Autistics fit into 2 boxes: high and low functioning.

.@SamAhern3 is joking about the irony of being told she’s not autistic, and having to prove it, because she’s been so good at masking that no one noticed. #autismwomen
also hi I absolutely love @SamAhern3 and @mindtheflap who are so funny and warm hearted and you absolutely should follow them both #autismwomen
.@mindtheflap notes that autistics of all genders mask behaviour, but only women are denied a diagnosis. This is a really important point, and feeds further into the masking cost and internalised mental health problems mentioned earlier up the thread. #autismwomen
Sensory differences are common to autistic people, and can have a social impact. @mindtheflap and I both cannot hear people in front of us talking in a noisy room, but are able to deeply experience music due to intense senses. #autismwomen
Noise, light, smell, heat, touch (and even touch by specific people), taste, sensitivity to food texture — these are all of us, but we each all have our own sensitivity issues. #autismwomen
.@SamAhern3 importantly notes that these sensitivities vary in intensity on different days. This nuance is really important when we consider reasonable adjustments or meeting spaces — some days an autistic person might handle a sensory experience, others they cannot. #autismwomen
Social interaction can be more difficult to autistic people because of social rules — nights out don’t actually start at the time it says doors open, dress codes may not be specific, and unexpected plans are barriers. On top of that, travelling can exhaust #autismwomen
While diagnosis is important, @mindtheflap and @SamAhern3 highlight that there is a lack of post-diagnosis support, especially in a financially crippled NHS. Both found their diagnosis had a social cost in high school. #autismwomen
Autistic teenagers who appear to cope are not given an SEN statement or the help that they may need. Universities tend to give the better help but issues still arise, which can be disastrous for young people struggling. #autismwomen
Suppression of behaviour and poor social relationships can be missed if autistic people are academically successful, meaning they often unsupported. After the age of 12, it disappears because you’re deemed a successful adult. #autismwomen
Support should be given based on ability to live independently, not a person’s age. #autismwomen
Only 31% of autistic graduates are in full time employment after 6 months of graduating, which is the poorest performance of all disabled groups. #autismwomen
Autistic people need specific guidance for leaving education and entering the world of work — “apply for everything and anything” is too broad for autistic people. We need to be taught the rules of the workplace e.g. dress code, office politics, punctuality. #autismwomen
Keeping a job is something that autistics struggle with — only 16% of us are in full time work which indicates not only an issue with accessing work but, crucially, staying employed. #autismwomen
To be blunt with you all, my employment history has been difficult because of my seizures primarily but being an undiagnosed autistic also caused a myriad of misunderstandings for me, and I’m certainly not the exception. #autismwomen
.@mindtheflap’s beloved tube station song is here #autismwomen
Accepting difference as a whole is something @SamAhern3 was able to do with diagnosis. A diagnosis is a waypoint for autistic people — people who have always been outsiders discover they are have their own ingroup. It can be empowering. #autismwomen
.@SamAhern3’s realisation about masking who she is came from watching the scene from 101 Dalmatians where they cover themselves in door to escape Cruella. #autismwomen
Q1 asks @SamAhern3 about them saying being so open about their diagnosis as a tween had a social cost. Sam says they were so excited and thought it wonderful, but rumour spread in high school that they were autistic, and flagged them to bullies. #autismwomen
.@SamAhern3’s experience as an autistic diagnosed as a child follows findings from a friend of mine’s undergraduate study: people diagnosed as children had a lot more complex feelings about their diagnosis than late-diagnosed people who see it as a relief. #autismwomen
That study also found that late-diagnosed people also felt that if they’d gotten it earlier it could have changed things for them, a sentiment not necessarily reflected by the early diagnosis population. I’ll see if the author has hosted it online. #autismwomen
I’m now in the talk with @Head_Limpsfield and students of @LimpsfieldGrang. Links for their brilliant books:

- M is for Autism:…

- M in the Middle:…

The students are answering questions about their experiences as autistic people. Lauren mentioned that anxiety rules their life, even if it’s not terrible it is always there. Basic day to day things are harder. #autismwomen
Jess describes her anxiety as getting trapped by a spider’s web — cumulative and entangling. #autismwomen
Another student said her anxiety affects her ability to process things, slowing her thought processes down and running her batteries low. #autismwomen
In case you’re wondering, @LimpsfieldGrang is a school just for autistic young women and everything about it is a dream, and @Head_Limpsfield is an absolute treasure. #autismwomen
The girls have cited that friendship can be difficult, especially misunderstandings and personal space — finding a way to say I need 5 minutes alone without offending them can be hard! #autismwomen
One girl says she struggles with friendship where people don’t act like friends, who can often take advantage of her passivity or play into her concerns about communicating correctly. #autismwomen
Concern that they’ve done something wrong or upset someone is common to the girls — not knowing when someone is upset or if you’ve done something. I personally struggle with this constantly! #autismwomen
One of the girls reflected that making friends at @LimpsfieldGrang was overall easier because autistic people are on the same level or may share interests, which they find useful as a method of making friends. #autismwomen
One of the things that I love about being with other autistics is how funny we are. Self deprecating and dry and earnest and honest. There is no balm like being around them, truly. #autismwomen
Advice for people who know autistic girls:
- Be calm and understanding, as getting cross makes things worse
- Give then the option of choice and don’t force them
- but encourage flexibility too! Help them test their limits.
- every autistic is different
- talk to them about their difficulties and listen
- understand how they feel and don’t tell them they are overreacting
- be aware of their senses and don’t guilt trip them for struggling
Upon finding out they were autistic:
- “That’s why I’m like this”
- One girl was bullied by teachers and students
- found people underestimated them
- helped them access spaces and they were believed
One girl didn’t find out she was autistic until she was 9 but she was diagnosed at 2. Initially she was surprised and confused, but @LimpsfieldGrang helped her understand what it meant and how it fit into her experiences. #autismwomen
One of the girls says every person takes their diagnosis differently and they need time to process, but you must be honest with them. It is not a negative or really even a thing! It’s just how you experience the world. #autismwomen
This is something I tell late-diagnosed friends: you don’t have to feel any specific way, but you have to let yourself feel things and process. Some people need to mourn a person they thought they were, some go straight to celebration. It’s wibbly wobbly. #autismwomen
Omg one of the girls made a periodic table of cupcakes and I am OBSESSED. #autismwomen
The girls are listing the joys of being autistic — their interests and passions, how that brings them strengths. #autismwomen
Advice for other autistic girls and women:
- “it will get better... you’ve made it this far.”
- It’s ok to not be ok and to feel it’s hard to talk about it.
- You are human, just like everyone else. Everyone is different and you are different too.

More advice for autistic girls:
- Live life to the fullest even when you’re down.
- If you are really struggling, ask for help but you have the strength to work things out on your own.
- If someone’s friendship is conditional, it’s not real friendship.
Q1: daughter struggles to go to school and wants to leave. One girl suggests give her time and let her go at her own pace. #autismwomen
Q2: how should autistic teens tell their friends they are autistic?
- Seed it into a conversation and see how they react.
- Explain what autism is because a lot of people don’t understand, especially what it is for you specifically.
- Treat them the same.
Ok I’m going to grab some food then try and tweet about the @autism women and girls module. Back soon! #autismwomen
Now at the talk about the Women and Girls Autism Module from @autism which you can find here. It is free for the next few months! #autismwomen
“You’re too warm to be autistic” — sorry everyone, the jig is up, we are the real lizard people. 🦎 #autismwomen
I’m now listening to the wonderful Sarah Hendrickx talk about sex and relationships. Sarah’s book Women & Girls with Autism Spectrum Disorder was really useful for me when I first discovered I was autistic. #autismwomen…
Sarah highlights that there is not enough research into how autistic people experience relationships and sex, and so the following information comes from interviews she’s done with people. #autismwomen
The vast majority of autistic people want someone in their life for at least a part time basis, but being alone is often easier. #autismwomen
There is some scant evidence that a higher percentage of autistic people are queer or trans, sexual or asexual. Many autistic women don’t feel particularly female; finding the line between non-binary gender or fitting in their binary is very common in autistics. #autismwomen
Sorry everyone Twitter booted me out even though I’m *very obviously* at a conference. Hopefully some other people picked up Sarah’s talk so far! #autismwomen
Being academically smart doesn’t mean autistic people aren’t vulnerable to abuse. Unable to spot hidden agendas, read signals and may have fewer friends who might spot dodgy stuff.
Autistic people are 10 times more likely to have an autistic partner than a neurotypical partner as they’re more likely to “get it”.

Autistic women often stated that their partners took on a role of a carer as well, looking after them as well as intrinsically understanding. #autismwomen
Autistic women tend to be more blunt — “do you fancy me? No? Ok bye then!!” as Sarah just said was solidly my dating strategy for most of my life. #autismwomen
Sarah brings up public personas which cannot be maintained. This absolutely reflects my dating history — boys expected a manic pixie dream girl and didn’t want to know when the mask started to slip. My current partner knew what a mess I was from go haha! #autismwomen
Autistic people like to date direct people similar to them, unusual or not quite fitting in. They may be the focus of your intense interest and you may hang out by not speaking, perhaps messaging — I can this “ambient hangouts” #autismwomen
Sarah mentions how autistic people find other autistics very easy, and neurotypicals and autistics tend to find each other a lot more confusing! This is why autistic people tend to gravitate to each other — or all end up on Twitter 👀 #autismwomen
Autistic relationships can be sexual or not, and emotional or not. Sometimes the shared interests might be the most important bit of the relationship to autistic people. #autismwomen
Sarah also highlights many autistic people see sex workers as it fits easier into their schedules. I hope they’re also all pro-devein and supporting @SexWorkHive #autismwomen
Autistic tend to see more value in doing than pure affection — for instance, being cooked for, or looked after. Demonstrative actions as an expression of love. #autismwomen
Sarah says we must teach autistic people to not compare themselves to neurotypical people, as it’s easy to feel bad about not being able to do things as easily as they can. #autismwomen
Give women a sense of ownership of themselves so they can make decisions about their lives and partners, but also teach them to explicitly set boundaries and have people they can ask advice. Unconventional people may need unconventional solutions. #autismwomen
Q1 asks how to deal with gaslighting that comes with “you don’t look autistic”, so late-dx people struggle more.

Sarah thinks that late-dx people have a predisposition for self-doubt, which makes us more sensitive to it.
I recommend that once you get your diagnosis, hold tight and be sure you are right. I know it’s so hard when you’ve been told you’re wrong for so many years, but no one can take this from you. #autismwomen
Q2 says that Tavistock gender ID clinic has suggested 35% of their referrals of young people are autistic and 10-15% have autistic traits, however there’s no plan to do any research into this. We need to support trans autistic people and understand what’s happening #autismwomen
I’m not sure I agree with the suggestion that young people don’t understand gender or that you do or don’t have to have a strong gender identity. Gender ID clinics are a place for all people to work it out and we should trust autistics and give them space to explore.
I’m aware I’m a little biased being a non-binary person, but also I think we should be cautious not to disregard people who are curious about their gender, whether they turn out to be cis or not. Either way, it’s their choice. #autismwomen
Legged it upstairs to listen to wonderful @emilylinka talk about barriers for autistic women in work. #autismwomen
.@emilylinka says that a lot of late diagnosed women struggle with employers saying “you used to be fine” when they begin to act more like themselves. They also struggle with lack of awareness, gendered communication expectations and sensory sensitivity. #autismwomen
Autistic women are less likely to have an established network of neurotypicals, and those that have their social networks online may be penalised by their workplace checking their social media. #autismwomen
Lack of post diagnosis support can mean autistic women don’t know how to manage themselves and their meltdowns are labelled as “overemotional” rather than an autistic person in distress - a performance issue vs a mental health one #autismwomen
Autistic women also have co-occurring conditions which means the focus in work is on “survival” rather than flourishing. #autismwomen
A key part of working with autistics is acceptance — awareness is not enough! Accept people are different and then work to develop a toolkit if strategies to understand what works for them. #autismwomen
Every employer with an autistic staff members should hire @emilylinka to come talk to you about supporting your staff. She’s bloody brilliant (I knew this already but now I’ve seen it firsthand) #autismwomen
We may not understand the physical symptoms of anxiety, which is less recognised than social anxiety. Equally so can psychological symptoms — irritability is a symptom of anxiety. #autismwomen
This is an amazing slide to help people describe their emotions, and understand how that will impact their productivity. #autismwomen
In true @emilylinka style she has explained the scale in relation to her feelings towards Harry Styles. #autismwomen

Strategies for managing anxiety fall into 5 steps:
- communicating anxiety
- prevention
- preparation
- relaxation
- change of perception: use a catastrophe scale — is your response realistic to the situation and in perspective.

Autistic people are more likely to go into full on catastrophe mode. Challenge this by look for supporting evidence but then discrediting evidence to help you create a balanced thought. This is really clever! #autismwomen
We’re currently trying out breathing techniques — which I find useful. There are lots online, and I personally like to breath along with this gif. you can find it by searching “shape gif” #autismwomen
Mindfulness alone may not work for stressed autistic people who are already hyper aware of their surroundings and thoughts, so @emilylinka prescribes The Chocolate Meditation. It directs our senses to something joyful instead. #autismwomen
Side note: people who dissociate this is a better way of calming than straight up mindfulness — I found basic environmental mindfulness encourages my brain to dissociate rather than ground. #autismwomen

Meltdowns in the workplace can be very stigmatising, whether it’s screaming, crying or self-injury, vs going catatonic and non-verbal. Employers need to understand it’s not a tantrum, and to learn how to support people having one. #autismwomen
After a meltdown, identify why it happened and think what led up to it. How can other people help you and how can you communicate it? @emilylinka suggests people around you stick to yes or no questions, to make it easier for you to answer. #autismwomen
Emily stresses that meltdowns are not an autistic person’s fault. It’s a result of living in a world not built for us, and our brains being unable to cope. Keep this in mind non-autistics. #autismwomen
Learning to avoid overload improves quality of life in the workplace dramatically for autistic women. Self-adjustments could include:
- headphones
- tinted glasses
- brimmed hats
- soft clothing
- Stim toys

Autistic people are often not great at working out what their sensory needs are. Think about your ideal home environment and work out why you do a thing, and then build that up to what adjustments you need. #autismwomen
Emily & I agree that normalising stimming is important — it’s why I named #StimBook after it! If you watch the campaign video here, I stimmed in a cafe as I explained why self-regulatory behaviours are important and the root of the project. #autismwomen
Audience member wanted to stress that reasonable adjustments need to be managed by the employers not the employees — many people are expected to get on with it and make changes, else are performance managed. If you manage autistics, it is your job! #autismwomen
Audience member says smaller businesses can use Access to Work to pay for reasonable adjustments but be aware it can be a rigid process, and might not fund a workplace assessment or autism specialist service. #autismwomen
Emily has seen a shift towards employers seeing the benefits of hiring autistic people as good workers who need support, but thinks there is still a way to go in terms of acceptance. There’s been a shift to seeing autistic people as a big pool of talent.

Ok gang I’m heading home as nightmare journey here wiped me out a bit and I’ve got a long trip home. Nice to see everyone. Hope you enjoyed the tweeting! And consider pledging for Stim to support autistic artists! #autismwomen
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