We are not OK – The Autistic Advocate

Kieran Rose

By Kieran Rose, The Autistic Advocate and Co-Founder of The Autistic Cooperative.

Society beats into me how I should be raising my son, but I don’t think my way is wrong just because it’s different. Still that pressure to seem normal is overwhelming. I’m constantly fighting the urge to Stim or rock or shutdown in public.”

– Jessica

 

Trigger warning for suicide, self harm, suicidal idealisation, depression

 

“Beaten”, 
“Forced”, 
“Abused”, 
“Medicated”, 
“Suicide”, 
“Illness”, 
“Terror”, 
“Anxious”, 
“Stressed”, 
“Crisis”, 
“Half-life”, 
“Depressed”, 
“Burnout”, 
“Disappointment”

This is a list of powerful words that you can clearly see are all connected.  They are all negative, they all speak of some sort of harm being afflicted.

To be honest you’d think they were words used by someone who had been through a major trauma of some kind.

You’d be correct in thinking that.

This is just a handful of the words that were used by Autistic people when I asked them to identify the relationship between their Masking and their Mental Health.

Just reading that list scares me.

These are descriptors of what Masking makes me feel.  I can identify with each and every one of them.

Yet they are not my words.

These are descriptors of a random group of Autistic people

These are descriptors of comments and tweets and personal perspectives that I see and hear constantly, when Autistic people talk about their lives.

Too many…

Too many Autistic people feel like this.

Too many identify Masking as the reason for feeling like this, yet we STILL do it.

Why?

Because feeling like this feels safer…

Feeling like this IS safer, than not Masking.

The pressure we are put under by Society, by the people in charge, the people we work for and with, our friends, our family; and people who we don’t know and whom will never know us, to act in the way that they insist we do, is immense. Overbearing.  Backbreaking.

The price we pay for refusal is greater than the price we pay for doing our damnedest to conform.

Some of us, particularly Autistic people of Colour, particular Autistic people in countries where the view of Autism is archaic, often hateful, pay an even greater price than me every time their Mask slips.

All Autistic people pay for our safety and your comfort with OUR lives.

The topic for week three of #TakeTheMaskOff is about how Masking affects Mental Health.

An important one when you consider that Masking leads to Mental Health issue.  That’s not an unqualified statement.  Researchers are starting to identify Social Camouflaging, as researchers call Masking, and the cost of it in terms of the suicide figures.  The two are, in my view, definitely linked as this incredibly important piece of research shows:

Risk markers for suicidality in autistic adults

Please go read it, it is, in my view, one of the most important pieces of research that have been done involving Autistic people.

I thought about this week long and hard.  I’ve written extensively about my own Mental Health and how Masking affects me, but I have this platform.

I use this platform.

You all read my words and identify with what I say; but I want you to know that there is a world full of Autistic people who are feeling the same.  Many of whom don’t have the platform that I do, but whose words are equally, if not more important.

I put a call out for responses.  I asked questions.

This is the Autistic Community speaking.

This is a cry for help.  A cry for understanding.  A cry for Acceptance.

Heed us please.

Take note.

You’re breaking us.  Every day.  One piece at a time until there is nothing left.


Masking and Mental Health… how are the two connected from your point of view?

“They are incredibly closely linked in my opinion – masking can lead to numerous mental health issues and exacerbate existing ones to a dangerous level. The amount of effort and energy required to mask takes away energy that can often be required in battling the mental illnesses so often coming hand in hand with autism. Not to mention the fact that life-long maskers (late diagnosis especially as they have no awareness of masking in my experience) will surely get to a point where it becomes nearly impossible to function but feel the pressure to keep the mask up leading to a spiral which often ends up in self harm and suicide.” – Anon

“I find my MH and Masking feed each other. For me masking makes me look like I’m “well” even though my mind often is a dark, messy and distressing place. My masking often means no one in my MH Team know I’m unwell until crisis point. But the poorer my MH is the more effort I put into masking.” – Anon

“For me, masking my silent struggles led to chronic anxiety. I still struggle, but a little less silently these days.” – MeDecoded

“The mask come with a cost. Rarely people want the real me. They want the Mask because they feel comfortable dealing with the Mask. At the moment it all feels devastating and hopeless.” – Kosjenka

“For me, masking includes not showing emotions/Autistic reactions to avoid looking weird.

I suppressed both positive and negative emotions for so long, I’m not sure how to feel. Learned alexithymia?

Not feeling joy + not processing negatives = lifetime of depression ” – Kliplet

“I think masking and being picked on in subtle ways when I don’t mask contributes to diminishing self esteem and makes me not want to be looked at because i always feel like a spectacle of some kind.” -Joseph

“Lots of ways, but a huge one is isolation.

Until I stopped masking as much, I could mostly never have a real connection with anyone, because I didn’t know how to (inter)act as myself – only as ‘the mask’. It caused me to keep people at arms length because a close friend would see through it” – Dani L

“I think it’s actually quite hard to separate out the emotional, mental and physical impacts of masking as there are feedback loops between them all, but I’ll try. In addition to my answers in the first question:-

Emotional – masking kept me emotionally balanced on the surface whilst carrying out day to day life things outside the home. The consequences were either explosion back at home, (with husband bearing the brunt of my projection onto him of my anger (or whatever) at myself) or an accumulation of feeling bad about myself and fear of getting caught out. Anxiety was/is an ever present feeling and is utterly wearing.

Mental – I suspect that the mental aspect of masking is a constant unacknowledged state of cognitive dissonance. so, we’re constantly on a see-saw of unconscious justification of what we do or say where it differs to what’s really going on inside.

Physical – the toll is enormous. I know that for most of my life my body has been in the hyper-vigilant fight/flight/freeze stress response. I can feel it in my body. I’ve practiced yoga for more than 30 years as a sticking plaster for that stress.

The only way I can reduce that stress response is to reduce my contact with other people.” – Anon

“Studies have shown that isolation effects mental health negatively. Masking is a form of isolation.” – #Thinker

“I spent several formative years being homeschooled, which had positive & negative results.  By fifteen I swore I had split personalities.  I begged for help.  My parents sent me to a psychologist who used the light bar hypnosis method.  I Masked So Hard.

Autism never crossed anyone’s minds, but I was always aware of my differences; playing at being an adult, using sci-fi to find friends.  I hid my depression & my parents accepted my eating disorder as IBS.  My daughter’s diagnosis opened my eyes.” – Sarah S

“I’d say repression would cause one to start masking.” – Liz Kocsic

“How are they NOT connected is the first thing that comes to MY mind! Because there’s a direct “Catch-22” of “if I DON’T Mask, I catch hell, get Out-grouped, feel ashamed/miserable…” but yet “when I DO Mask, other people aren’t AS rude, but yet I’m not my true self!” – Polymath Megan

“Masking often leads to metal illness,burn out,breakdown etc” – Autistic Carnival

“For me, years of feeling different, excluded, socially inept & consequently isolated. On & off anti-depressants for last 7 years though had symptoms for decades.

BUT since my diagnosis I have halved my dose. Understanding ‘me’ has been good medicine for now.” – Carole Manley

“Stress from years of expectations to follow society’s traditions (e.g. Xmas and Birthday cards) when I really don’t want to. Repeated depression from the effort and not understanding my inner rebellion. All before my self-diagnosis. Feel much more free now.

Also inner battles about not wanting to go to noisy ‘entertainment’ that I think is anything but -> low self esteem -> depression.

As a parent, low self-esteem due to inability to be a “proper parent” & enjoy kids birthday parties, talk to other dads, remember drinks and food orders, keep track of inane conversation & small talk without drifting off.” – Alan

“I can see a very clear correlation in my life between
1) No longer masking constantly (following my diagnosis)
And
2) No longer feeling desperate (and periodically suicidal).

I haven’t had a single depressive episode (complete with suicidal ideation) since my diagnosis. It’s been almost a year now.” – Shannon M.

“Masking and mental health are connected for me in the way of my anxiety. A huge part of my anxiety is from trying to fit in a world that wasn’t made for me. I also fell in to an abusive relationship because I thought that was how people were supposed to show love in society.

I was misdiagnosed a few times before I found all my quirks and traits in a chart on Aspergirls. Until I brought up a direct request to be checked for autism, none of my previous therapists or psychs thought of it.

I feel that masking is a negative response in general, but especially with my child. I do things that I see are appropriate in my country, but it feels like I’m forcing it. Like how you know when a smile isn’t genuine. I worry that this forced version of love will make my son feel like he isn’t worthy of real love. ” – Jessica M.

“I do believe masking attributes to many mental health problems as I was always diagnosed with depression and anxiety. Autism wasn’t even brought up till I was 28 seeing a doctor for continuous attention slips and she said I was autistic. Didn’t believe till I read about girls hiding their autism by masking because I knew I had been doing that for as long as I can remember. But I don’t know how to stop. I don’t know how to be myself because I’ve done it for so long. I have no likes or interests and what I want depends on the people around me. I don’t know what comfort and happiness feel like anymore but I don’t want my children to have to deal with the same.” – Anon

“I’m a 41yr old female, a year into discovering I’m on the spectrum. I’m a classic case of a late-diagnosed woman, “Autistic Pedigree” (aka, multiple mis-diagnoses) and all.

What I thought was learning the social pleasantries everyone does to get along, I now know was making. What I thought was giving up my childhood toys and habits as part of coming of age, I now know was giving up my therapeutic stims.

Masking and mental health? Intimately connected.” – Anon

“I’m a 38 year old autistic woman with mental health issues.
For me I think that masking and mental health issues are connected by the fact that I feel the need to mask in order to be accepted by society and to appear to fit in. Because I feel that I need to mask to accomplish this, it makes me depressed and anxious because it feels that my true self wouldn’t be accepted or would be shunned/bullied/cast out. Feeling that your true self would be considered a freak or an outcast from society is incredibly stressful and makes me so anxious as it has made me feel like there’s been something intrinsically wrong with me my whole life until my diagnosis.” – Jo

“My five year old son is Autistic… he had some changes at school and was being pushed beyond his capacity and ability to do what the NT kids do (this was without our knowledge). As his behavior at home started to deteriorate, we did some checking in and figured out the various possible contributors to his high level of stress and his increased number of meltdowns. I also read your article on burnout and figured out that we were rapidly heading that way.

Reading a line in that article about little kids was like a punch in the gut.

We rapidly pulled back on unnecessary activities (including with the provider above who was convinced about OCD) and insisted on much lower demands at school. And we seemed to have been able to pull back from the brink of a full on burnout—or maybe just shorten the duration of his recovery.

To me, this experience was the little kid version of being pushed to fit (mask) and the ensuing nose dive.”

“I knew from a very early age that I was different.

From the outside I appeared to be a normal, bright little girl. I made friends (albeit superficially), I did well at school, I was well mannered. Sure, I was a bit “shy” and a “fussy eater”, but well within normal limits, right?

Except that inside I was suffering. I didn’t know how to talk to people, I was a target for every bully going. My friends would turn on me, but I’d forgive them a day later.

I had raging anxiety, and I regularly couldn’t sleep because of it, even from age 4. I had food phobias, that were dismissed as nonsense. I couldn’t play with toys or read books that were part of a set, if any of the set was missing.

I pulled clumps of hair out of the sides of my head and chewed my nails until they bled.

I struggled to talk to other girls – with my interests being dinosaurs and bugs.

My mum was emotionally abusive, and always wanted me to be the typical “girly” daughter – I wasn’t.

But, from the outside I seemed happy and normal.” – Anon

“I hit 14.

Up until that point I’d managed.

I was in the highest sets in everything at school. I took 13 GCSEs. I had a large group of friends, a boyfriend, a reasonable relationship with my parents.

Then I snapped. I stopped going to school. I stopped talking to my friends. I had sex (at 14!)… I started self-harming, and drinking. I finally turned on my mother. I did ok on my GSCE finals, but pretty much flunked my A levels. My mum forced me to get a blood test to work out why I was “crazy”, my dad had me up against a wall to “stop” me self harming.

I didn’t know then that I was autistic, in fact, I’ve only just figured it out after trying to get my daughter diagnosed.” – Anon

“…that’s what masking does. It destroys you, from the inside out. You can only wear it so long before you snap. ” – Anon

“My daughter is a heavy masker. I’ve already been warned that I’ll have to fight for her diagnosis because she’s such a joy at school, or anywhere she goes. She’s that typical “perfect” girl. But at home it’s a whole other ball game. She’s properly OCD and her anxiety is awful. She doesn’t sleep well. She will lose the plot if anything is out of place.

But, if you asked people who knew us, they’d tell you that there was no way she was autistic.

My Son doesn’t Mask at all…  Out of the two of them, (My Son and Daughter), she fits the “norm” the best, but she suffers so much more than him. Why? So she can be like everyone else?” – Anon

“I am the parent of a 15 year old autistic girl who was diagnosed age 12. She is an expert masker and the impact on her mental health has been devastating. All the social and sensory pressures that she has hidden have led her to be severely depressed for over a year now. She has made several attempts on her life.” – Anon

“I don’t feel genuine or make real connections when masking & perpetuates feeling out of place, feeling less of a person, less able or worthy. Put this on repeat all day, every day &soon all you feel is less &then your old friend depression is right back there sitting next to you!” – Isabel

“I am a 35 year old self-diagnosed autistic woman. Due to my skill at masking, up until this past spring there was never a flicker of the though that I might be on the spectrum. I work full time, have a great family, a spouse and a daughter almost three years old. Maintaining a mask while enjoying this wonderful life eventually broke me.

In March of this year I had a psychiatric evaluation following a mental health crisis, which in retrospect was simply a meltdown of epic proportions.” – Anon

“Masking for me feels safe BUT the anxiety and depression sets in cos I am unable or not allowed to be my authentic self – it’s a catch 22 be my self authentically and feel exposed open to judgment and unkind words or thoughts about me or continue to mask and somewhat feel safe but desperately alone – feeling trapped in my own body and mind.” – Jean

“I think there’s a complex relationship between masking and mental health – an uneasy balance. To survive as long as I did and indeed be successful in the eyes of the world for much of that time, I had to mask. To have a relatively ‘good’ sense of self-worth (as I thought at the time) I had to pretend to fit in.

However that was at a huge cost and I’ve lived most/all of my life anxious with regular bouts of depression and burnout.

Anxiety is the result of never being sure that I’ve read the situation right and from there said or done the right thing. I just assumed that I was spectacularly inept at anything social unless it was an obvious situation for which I had a script, a routine, a performance.

Depression was/is a constant at a low grade level. I call it my perspex layer. It helps to reduce the number of really deep troughs but it also means I rarely experience the highs, either.” – Anon

“Only a few people believe I’m autistic – my mask is that good, they are the few that see all my shit ha ha, they see the meltdowns, they know of the depression, the hopelessness, the lost-ness, the sheer mountainous energy it takes just to function in the world, to ‘enjoy’ (endure) parties and outings, trips to the park, and shopping and driving and negotiating conversations. No-one wants to see the blunt woman, the one who speaks it as she sees it, the one with the unkind tone of voice, the one who really, most of the time, is far happier in her own little world than navigating precariously and fearfully through yours. And, I really wouldn’t want to hurt anyone, or make anyone feel unseen or unloved so I do my best to pay attention, to remember details, to be kind and to show affection – I don’t know if that is the mask, or my true nature…” – Kuhla


What is your experience of mental health and diagnostic services/support services, their knowledge of Autism and their knowledge of Masking, or lack thereof?

“They didn’t listen to me when I said I felt worthless and don’t want to be here anymore.” – Anon

“In Canada the cost for an adult assessment for ASD is minimum $2000, and I feel it likely I would not be diagnosed due to the lack of understanding. I suspect my daughter is autistic as well. At this point I am not even bothering about diagnoses for either of us because the lengths to which I know I would have to advocate for her or me are too daunting. ” – Anon

“My 27 year old son thrived in Grammar School structure but burnt out 1st year of uni. Since then he has been ‘stuck’ and getting increasingly anxious and now severely depressed. Bexley London NHS assessed him with no sensitivity to his Asperger diagnosis and refused his advocate being with him. On the same day they ‘discharged’ him. The charity Mind also unable to support ‘they haven’t got expertise in autism’. Thousands of others in same situation.”

“After several attempts on her life, my Daughter was admitted into an adolescent mental health unit last October for 5 months, and the shocking lack of knowledge of autistic girls and masking has compounded the depression to the point that she made many further attempts on her life is now suffering from PTSD.” – Anon

“I went to see a therapist who basically put it down to “teenage depression and angst”, but it wasn’t. I felt like they only tried to treat the symptoms and not the cause.” – Anon

“I got my diagnosis a few years back. And that was it. I didn’t get any follow up support for wellbeing etc. Just a few sheets of paper to look at which were no help at all. I’ve kind of just done my best to get by on my own. I didn’t know where to turn.” – Connor

“Where I live they believe there are no autistic adults except those in institutions. One cannot even get a diagnosis in my country and there is no support other than one psychologist in a private practice. The ones dealing with children don’t show any knowledge of masking, they enforce it.” – Kosjenka

“The lack of support is shocking. The Mental Health professionals who market themselves as specialists often know nothing, so the onus is on us to ask about their training/knowledge. Therapy can be helpful or extremely damaging, I’ve experienced both. I can’t bring myself to go back even though I need it

I’ve spoken to multiple other adults who want mh support but have been unable to access it. It’s a huge problem. I would have been diagnosed sooner but only saw Mental health professionals who were ignorant of autism in my early ears. As soon as I saw a physician who knew about autism it was obvious” – Eyeslikeeels

“Very few come close to understanding.” – #Thinker

“They don’t want to know because of autism neither falling the category of mental health or leaning disabilities. It is hard work because they seem to struggle if you have more than one issue that overlaps.” – MummyHereAndThere

“When I was diagnosed, I asked about therapists who worked with adults , I was told there really weren’t ANY. I live in a university city.

Too add to this, I’ve basically sat on my diagnosis because of this. I’m tired of being in therapy for years on and off and the fact I know more about me has healed me lots, but I’m still very alone. I feel very defeated and lose my drive when I think about trying to find help.” – Mister_Boop

“I have been fortunate, in that I currently have a good counselor.  She was trained for ADD, ADHD, & autism in kids.  She twigged onto my autistic self once we got past the severe depression post widowhood.  It took a few years.” – Sarah S

“The unit refused to give my Daughter a diagnosis of depression which she actually needs, so that she can feel believed, accept it and start to move forward.

They saw a girl who was trying to engage with her peers (masking away like a good ‘un) so assumed she was just a bit low.  This understandably frustrated her and she went into meltdown after meltdown and was sectioned twice because of this. The focus was then on meltdowns and not her mood.” – Anon

“As a young teen i was right away Disagnosed with BPD after struggling most of my life with self harm, suicidal thoughts and often acting on them. I questioned my Diagnoisis from day 1 saying it didn’t fit and it didn’t. I was heavily medicated to deal with issues that i can now see were Autism not mental illness. I was diagnosed at 18 with BPD it wasn’t until I was 24 that someone outside of NHS or medical field suggested ASD. It took 9 months to even been seen by the Adult Autisum Team, I was diagnosed within 1 session and told I’ve never had BPD, they also mentioned they couldn’t believe my ASD wasnt picked up on sooner as i had all of the markers for it in childhood. 3 months on I have very very little support from my MH team as they’re not sure what to do with me or my treatment plan.”

“I find socializing extremely tough. Also every now and then, frequently, I break down and phone authorities (like the landlords) begging and shouting for help. So now I am a “difficult woman”, a nuisance. I have gone from being quiet and shy to a loud nuisance. THis is because I am autistic and cannot cope and get zero NHS/social services help (believe me I have tried). But no one says, “Oh, she’s autistic, she can’t cope.” Basically it comes down to, “You’re so rude!!!” – Pamela

“I had my son when I was 17, and since then my mental health has been a rollercoaster ride! What originally was diagnosed as postnatal depression, actually turned out to be borderline personality disorder ” – Chloe

“I was misdiagnosed a few times before I found all my quirks and traits in a chart on aspergirls. Until I brought up a direct request to be checked for autism, none of my previous therapists or psychs thought of it.” – Jessica

“My experience of Mental Health Teams (MHTs) is pretty varied. It was the acute MHT that initially referred me for an autism diagnosis and the community MHT kept checking on the year long wait list to see where I was on it… However since getting my diagnosis things have gone rapidly downhill.” – Anon

“My next step is to join the Action for ASD membership and I think I can then access other support. I haven’t done this yet because the forms are asking all the same question over again and I’ve yet to get over my disappointment at the lack of next steps.” – Anon

“Professionals – they are hopeless.” – Anon

“I was referred for an autism diagnosis by my GP and was told they weren’t taking referrals, and there isn’t a waiting list to go on. I can call back in a few years to see if that changes… and they wonder why autistic people kill themselves?

I mean, I’m not going to, I would never do that to my family. But sometimes “playing normal” all gets too much, and where are we meant to go?” -Anon

“I self-referred to our local services at the point that my suicidal ideation frightened me. I was invited to a group meeting where we all had to fill in questionnaires and then were given a presentation on what was available and related timescales. What I really needed was one to one counselling; 6-12 months wait.

The only thing I could access immediately (bearing in mind I was thinking of ways to kill myself) was computerised CBT. I kept working through it, clicking and clicking and my “tell me something I don’t know” voice kept getting louder and louder until I gave up on the programme. I had spent years on this self-help shit. I knew all the answers. None of them changed anything.” – Anon

“My Daughter has lost trust in so many people, however we are now working with a couple of amazing psychologists, one of whom is autistic herself, and the other who has family experience of autism.” – Anon

“I found out my medical diagnosis had been lost. When I spoke to my doctor that I had been diagnosed with autism when I was young but the paperwork was gone and that I wanted to be diagnosed again his exact words to me were:

“everyone is a little bit autistic”
“I know great doctors with autism”
“you made good eye contact and show empathy I don’t think you’re autistic”.” – G

“My daughter 13 on pathway for asd diagnosis suffers terribly with anxiety paranoia in a really bad place at the minute…bullied badly in junior school…barely attends secondary through sensory issues…i feel let down by school i feel they should of picked up sooner…” – Claire

“Diagnostic services: from what I’ve read I’m lucky to live in an area with relatively fast access to diagnosis… I self-referred following a telephone call to check I wasn’t letting myself in for a bunch of people who thought it was a boy-thing etc.

It took me three months, I think to get my pre-assessment interview. The interview was fine until the patronising “you’ve done very well to get as far as you have done” line. Well meant, I’m sure but it says it all (unless I’m reading it wrong).

I then had a six month wait for actual assessment and that was semi fast-tracked because of my previous suicidal ideation (I wasn’t currently suicidal at the time of the pre-assessment).

The assessment interviews were very thorough but I was disappointed in the final report as it was simply a regugitation of everything I’d said. Just like the CBT all over again – tell me something I don’t know. I was hoping for pointers, direction, help in the first steps of making the most of the me that I actually am.” – Anon

“Within the past year (actually less) I’ve had a provider (not a mental health provider) tell me that they think my son probably has OCD, because he shows an unusual amount of interest in specific activities (such as scripting videos)  and has a hard time and high levels of anxiety about transitioning away from preferred to non-preferred activities. These are very nice folks, and they don’t practice ABA, but these transitions weren’t handled in what I felt was a gentle way. (I know since I insist on being present.) This contributed to burnout, which I’ll detail below. So for being and anxious autistic kid, he was pushed to be evaluated for OCD by a provider who was supposed to be working on his MOTOR skills. And yes, they know he’s autistic, but apparently his behavior seemed unusual to them still.” – Anon

“Mental health services showed no knowledge of autism given that their process were so geared towards directing you towards specific pre-set boxes of solutions.” – Anon

“The diagnostic services seemed to be relatively up to date with better awareness of how autism presents in women for example. However there were a couple of times during my assessment where the assessor didn’t know about recent developments in autism. Annoyingly, I can’t remember what those things were. I think they were things coming from autistic people themselves rather than academia. I rememebr thinking that the assessor was trained to administer the assessment but probably didn’t have a much knowledgfe of what you then do with that to make autistic life better, which is what really counts.” – Anon

“What I see clearly now is that years of dealing with a world that is too much can lead to both mental health conditions and burnout. And sometimes burnout being mistaken for a mental health condition. And those things aren’t treated the same way, so it also leads to people feeling like failures and imposters when they’re actually neither—just running a different OS.” – Anon

“Psychology discharged me after the initial 6 sessions (the first psychologist was amazing and I really miss her) because I wasn’t able to properly engage as I didn’t have goals or ability to think about the future or identify my feelings. Community Mental Health Team have pretty much discharged me (not contacted me for 4 months – I find it impossible to reach out to them) and they have told my GP that they don’t know if they are able to support me due to my autism. Acute Mental Health Team are an acute service so they are short term – I have access to a crisis lounge but to get admitted for an hour or so often requires a phone call as only a few of them understand that I prefer to communicate via text message.” – Anon

“Mental health services were pretty inept on three counts

1) a serious lack of resources and from there ridiculous timescales for accessing any kind of help.

2) and because of 1), a mad kind of junction-box approach to support directing you down lines which don’t really take you where is needed but at least it’s sooner than what you really need.

3) from my experience not at all geared to autistic people.” – Anon

“In fairness to the mental health services people, none of us knew I was autistic. It wasn’t even a tiny suspicion in my mind – I’m a girl, right? But that in itself is a huge gaping hole, is it not?” – Anon

“I Accessed Mental Health support before (CBT) & despite me saying it makes me worse, my current therapist decided it was the best route.  They Barely considered my autism, or needs because of it.

No one even mentioned masking during diagnosis or therapy & yet it describes me and my issues perfectly.” – Isabelle


How do you feel that Masking or the need to Mask has impacted on your/your family member’s emotional, mental and physical well being?

“‘You lied on purpose and pretened to be someone you aren’t.’ I guess it’s very… complicated.” – Kosjenka

“Apparently I completely fooled my parents. Just recently, they asked why I have “more issues now” than as a kid. I had more issues as a kid, but now I wear headphones and actually decide to BE myself. They had no idea about my anxiety.

Ironically, when I tell them all I needed to do to “mask” is not say anything, try to please people, and nod in agreement, my dad was nodding vigorously at me, in agreement lol…

My mom said she didn’t know how in ‘Please Stand By’, how the main character could leave her group home & do all that while being so anxious. I said I did a ton of things while I was anxious as kid.

It was kind of eye-opening realizing just how differently she saw me.” – Autistic Science Lady

“I met a man who I can be myself around, and I’ve had 4 children, but I’m still struggling.” – Anon

“I still mask heavily around everyone but my husband, and it’s soul destroying. I’ve been doing it so long that I don’t even know who I am anymore. I hate myself, and I often joke that I’m chronically suicidal. My anxiety is terrible and I struggle to get five hours sleep a night. I have a lot of friends, but no one really knows me.” – Anon

“Children learn by example. What example am I setting? I want them to grow up and be the unique, wonderful autistic people that they are, and damn the rest of the world – but I can’t do it myself. How do I explain the fact that I hate the qualities in myself that I love so much in them?” – Anon

“Three weeks ago I went on a five day camping trip with girl friends that we’ve done every year for the past five years. In previous years, by the final day I was completely mute and unable to interact but had managed relatively well up to the last day.

This year I managed to speak during the last day and on the surface looked ok. I had taken myself out of activities at various points during the five days, to decompress. I had been open and honest with my friends when things were too much. I went to bed early and got up early. Once they had driven away from dropping me off, I sank into an almost catatonic state and have stayed there for the intervening week and a half.

Emotionally I feel bereft because I can now see just how badly I match with even my best friends when I’m not masking.

Mentally I believe that I’m dark and heavy to be around. I want to talk serious things. I don’t know how to play and be silly. So, I’m depressed again.

Physically, I have no energy and I’m lethargic and when I got home from the trip I was hugely tired. I’ve since come down with a flu-like virus.” – Anon

“I went most of my life thinking I was a bad person for it. No one knows anything about me. I have a long list of hidden talents and I’m ashamed to acknowledge every one of them. I feel disconnected from family, like they know nothing about me other than what I eat.” – Lis

“After nearly 8 years in a relationship I can tell my partner is embarrassed to accept or admit I’m autistic and comes up millions of excuses for why I am as I am. They blame me for reacting,expression of emotion, Stimming. The latter they claim makes them jumpy.” – Autistic Carnival

“I constantly get “you aren’t the same person I married” from my wife… 2-3 times? Ok. 100 times? Way past old.” – #Thinker

“Masking is leading me to a very dark place and the risk of harm is ever increasing. I am exhausted, mentally and physically. I mask not only the autistic traits but also the mental health issues – masking has become such a part of my personality now that I don’t know who I really am and I am unable to let barely anyone see me with even a small amount less masking.

My family know nothing of my mental health struggles and very little about the autism diagnosis because I can’t handle talking about it and the one or two friends I do have seem to be struggling so I keep hiding stuff from them too.” – Anon

“I mask daily as I find personally I’d rather just be myself around those I really trust rather than anyone and everyone because I have anxiety about the way certain people will react to my behaviour.” – Chloe

“Part of what convinced me to treat what I saw happening with my son (burnout/potential burnout) as an emergency was the dawning realization that he’s not the only neurodivergent person in my extended family. A sibling, possibly a parent, possibly myself. All diagnosed with mental health conditions at various time—diagnoses that didn’t really fit completely with treatments that didn’t really work. ” – Anon

“I feel that masking is a negative response in general, but especially with my child. I do things that I see are appropriate in my country, but it feels like I’m forcing it. Like how you know when a smile isn’t genuine. I worry that this forced version of love will make my son feel like he isn’t worthy of real love. Society beats into me how I should be raising my son, but I don’t think my way is wrong just because it’s different. Still that pressure to seem normal is overwhelming. I’m constantly fighting the urge to stim or rock or shutdown in public. I hope my son doesn’t need to see me struggle as he gets older.” – Anon

“I was able to be my complete self at home however, my daughter will now not allow me to be – constantly being harshly critical of my personality traits.” – Anon

“I’m exhausted.  I hide so much at work for my own protection.  I struggle to find the balance for my daughter so she can be herself without Masking but having it ready if she needs it.” – Sarah

“One day when I was 19, I was in the car with my mother and told her I was going to go to the doctor because I thought I had Borderline Personality Disorder, it was then she told me I had autism.” – Anon

“I always feel like people can see The Awful Thing I Am – not autism, some horrendous flaw for which I am entirely to blame. This makes me afraid of people. Actually it probably IS autism – the unacceptably of me in NT society, which NTs instinctively hate. So as this says: so validation, no self worth. My present self thing is this – having lost my job and being in a bad state – “This is me. Like it or lump it.”” – Pamela

“My masking confuses and worries my family cause they can never tell if I’m REALLY OK or am i just smiling to cope, this has caused my mum to experience anxiety and depression which impacts her Fibromyalgia which can make her quite physically unwell. She receives very little help to manage these issues.” – Anon

“I think after the event where I have masked the emotional side. I get drained and very down in some cases which effects the atmosphere of the home.” – MummyHereAndThere

“For me masking causes often severe situational depression. I am always manufacturing ways to feel content and at ease. I’m very impacted by external factors. My happiness usually solely relies on external input. This can be dangerous. I’m easily worn down by my environment.” – Edge of the Playground.

“For me, the checklists (Diagnostic Criteria) are so far off, but the words of other Neurodivergent people are so familiar that I’m still a bit lost. I know now that what I assumed was how everyone experiences the world very much is not. That’s mixed with also always knowing I’ve been different (more sensitive), but not understanding just exactly how different until I viewed the world through the lens of my son.” – Anon

“Masking has not impacted my immediate family because they tend to be the only ones I don’t automatically mask around. It does impact my romantic relationships. I have never had a significant other that fully understands my needs because of how well I mask.” – Autistic Science Lady

“Masking has been really hard on me and my family as I feel I’ve lost who I am while they’ve bared the brunt of the resulting meltdowns. Until diagnosis and learning about masking I didn’t know why I struggled or would have these outbursts I can’t control.” – Anon

“Masking makes it easier for me to be with my family, my course-mates, and my staff. I can pass off as ‘normal’ enough. Part of masking (In my opinion) is doing more than what’s expected of you to seem capable and ‘normal’. It impacts my Mental Health a lot, because I constantly crash and get depressed.” – Ana


Are you OK?

“‘Are you ok’ is the one aspect of masking that i really struggle with. I often respond with ‘is that a genuine query or are we being polite?’ Or, i will give them a 10 minute update on my wellbeing. I can mask with my ‘work head’ on but it exhausts me. It slips a lot.” – Sappho Attica

“Nope. But I’m trying for my daughter.” – Anon

“I honestly VERY rarely feel like I’m okay, and, like [Another Twitter user] mentioned, could probably write quite a bit about it.

There’s just so much to hide, and it wears on you. I constantly feel like a broken freak, and yell at myself to “stop it!” or “don’t be so weird, goddamnit!”” – Polymath Megan

“The one thing I do want to say in reply to this is that that last tweet of Kieran’s (The question: Are you OK?) nearly made me cry last night because the mask is slipping and cracking and goddammit I’m fine, I promise I’m fine, no one needs to worry about me…

But I’m not.” – Anon

“I can’t imagine that any of us are fine.

When my Mask slips I regularly try to tell myself “it’s okay. It’s okay.” (like, to reassure that I’m not a freak), but, the reason I have TO tell myself “it’s okay. You’re okay!!” is precisely BECAUSE I’m not.

Few of us are.” – Anon

“Being at the point every day of feeling like things would be easier if I didn’t exist, just makes everything all the harder.” – Anon

“No.  I haven’t been all right since my husband died.  But I’m faking it for my kids.” – Anon

“Never. But I cope.” – Clockwork Dragon

“No, I am not ok. But I survive.” – #Thinker

“Now, I know I’m down in the dip (my metaphor for my mood swings) and that when I come back out if it things will look better. I assume that at some point I’ll reach a point of balance having taken the mask off, but right now it doesn’t feel much better than with it on.” – Anon

“I self harmed for the first time in 7th grade and painfully remember the first timing thinking that I’d rather be dead. I’ve never been close to OK.” – Anon

“I’m slowly trying to filter out my mask and my real self. Right now? Yea, I’m actually okay. My brain’s decided to stop caring. Once I have to interact with strangers, it cares, and I feel broken. But right now I’m too exhausted to care and I’m surrounded by understanding people.” – Autistic Science Lady

“I’ve been suicidal many times in my life and most times it’s because I simply cannot cope with the way the world works (the layers of ‘truths’ and the sensory overload). This campaign has really made me question who I am without the ‘good girl/ nice girl’ mask, and I realise I don’t know” Kuhla

“I am currently 21 with severe depression, anxiety, PTSD and I’m also currently suicidal, and nobody in my life really understands what it’s like to feel all of this and trying to cope with being autistic.” – Georgia

“I’m not OK, I’m feel lost. People don’t understand me and i don’t understand them. I often get moments of sheer terror that I’ll never be understood, that I’ll never understand them. I’m lost and very alone. Feels like I’ll forever be stuck in the void between “too ill” and “not ill enough” to receive the treatment I need to be able to cope with living.” – Anon

“Ha! Course I am, because if I tell you what is really going on inside, I’ll pin you to the wall, not stop for breath for several hours and you’ll run away screaming and never come near me again.” – Anon

” I’ve struggled all my life socially, holding down a job, academically etc I’m managing to hold a job now but socially I’m struggling so much.” – Jean

“Living at this constant half-life takes its toll and there are many times when I would be more than happy if life just stopped right now. It all seems utterly pointless.” – Anon

“For the many many years I spent trying to fix myself, my driving force was about being authentic. Now that I’m trying to be authentically autistic I’m experiencing the flip side of taking off my mask. To be really true to me, my emotions, my thoughts and my sensitivities, I find I’m living even more of  a half-life, hidden away at home in an effort to reduce the psychological, sensory and physiological impact of being out there.” – Anon

“This tweet nearly made me cry. The mask says yes, I’m fine. But the truth is starting to break through the cracks in the mask and I think my other answers make it obvious how very not okay I am. And it all gets compounded with feeling abandoned by Mental Health Teams.” – Anon

“Sorry it’s all so negative but such is my life at the moment…” – Anon


If you’ve made it to here, well done, truly.

I know that everything you have read here is harrowing, gut-wrenching and heart-breaking.

I have sat and read all these comments, I have had further conversations with many of the people who have written them, to be honest I could have gotten more, but I deliberately chose not to push it too far out there.

Why?

Because I knew I would be swamped by responses, I knew that reading them all and collating them would harm me, I knew I probably wouldn’t be able to do it on my own.

I have been completely emotionally overloaded by the very act of pulling this together, triggered by so much of what I have read.

Even just the act of writing that last question almost broke me.

Are you OK?

Honestly?  Really honestly?  A not-Masking response?

No, I’m not OK

None of us are.

We spend our lives saying that we’re fine, apologising for anything vaguely negative.

We’re never OK, not as long as we’re taught that we have deficits, that our behaviours are negative, not as long as we are made to think and made to feel that we do not fit.  That we are not ‘normal’.

Not as long as people measure us by their own arbitrary yard stick, as long as the majority insist that everything they do is right and ‘normal’ and everyone must adhere to that, change, hide, or be forced out.

Not as long as we are forced to live in a Society which does not accept us for who we are.  A society which singles us out and violently rejects us if we are ourselves.

I’ve lived many of the issues raised in these answers.  Most Autistic people have.

These are the lives we forced to live, simply because of the fact that as much as anyone reading this might declare “There’s no such thing as normal”, they will still go on to make a judgement based on their Societal view of what is normal.

We Mask because we have to.

Yet Masking kills us.

Our lives are a paradox.

So we choose the slightly lesser evil of the two.  As I said at the start, we Mask to keep us safe.

So how unsafe must we be to commit an act of what is effectively self-destruction.

How unwelcome must we feel that we harm ourselves.

And how deep must we go, that when the times comes that we realise that we are Masking, that we know how much damage it does us, that we know that the act of Masking is literally killing us, that many of us can’t even stop. Either because they don’t know how, or because, by doing so they are still too much at risk for the same reasons that they started in the first place.

The running theme with these responses underlines the very things that I and many Autistic people talk about, that Masking and poor Mental Health are intrinsically linked; That suppressing who you are, suppressing your needs, suppressing the way you physically and mentally self-regulate is nothing but detrimental to us.

Hours, days, months, years, decades of Masking has a huge mental impact on Autistic people, yet still now only researchers are starting to make those links.  How long before Support Services and Diagnosticians catch up?  How long before Schools and Doctors catch up?

How long before these Services realise that they are literally killing us.

These Institutions, who are the first line of defence in preventing Autistic children from being missed, or from being forced through situations which cause them harm, cause us harm, are often running on and basing decisions on information and training that is decades out of date.

I speak of Responsibility in ‘Responsibility, Autism and a Legacy of Failure‘ and it is woefully lacking everywhere, lots of people thinking they are doing good are doing harm, lots of people making a lot of money, lots of people busily misinforming the world for their own agendas and who does it impact?

Ironically, as I am writing this a pop up has appeared on my screen declaring that NHS England have said today that ‘autism and learning disability’ will be one of four clinical priorities in their upcoming ten-year plan to improve health services in England (this is often called the ‘long term plan’).

This is the same NHS England that are currently costing using Behavioural Therapy as THE front line treatment for all new child Autism diagnoses.

Behavioural Therapy takes an Autistic child and teaches it to act ‘normally’ by using adversives and rewards (depending on the type) combined with repetitive actions.  It encourages the Autistic child to think positively about Non-Autistic behaviours and negatively about Autistic Behaviours.  Autistic children are often eager to please in order to fit in, therefore are ripe for being coerced, which is why Parents often report “My Daughter/Son loves their Therapist.”

Its roots are in animal training and Gay Conversion Therapy.  Yes, the same Gay Conversion Therapy currently looking to banned by the UK Government.  Both were created by the same person.

Gay conversion therapy sought to make a Gay person ‘normal’ (Heterosexual).

Behavioural Therapy seeks to make an Autistic person ‘normal’ (Behave in a Non-Autistic way).  Oh the fans of Behavioural Therapists will call it a science and they’ll tell you it teaches “Useful, practical life skills”, they don’t mention that everything is based on observation (how useful is that when a child is prone to Masking naturally?), they don’t mention that much of their ‘success’ is based on an Autistic child being dragged through developmental milestones that they are not ready for, because Autistic children develop at different rates, they don’t mention that the Behavioural Therapy industry regulates itself, they don’t mention the money lurking behind the scenes.

And they certainly don’t mention the long term PTSD it creates in many of it’s victims.

There is a reason Autistic people call it child abuse.

It forces Autistic children to Mask.

Tell me, you’ve read this far.  Is Masking a good thing?

So yeah, responsibility.  There’s the NHS ‘improving’ Services by looking at using a tool that encourages Autistic people to have crushing Mental illnesses, self-harm and kill themselves.

Nice.

Who has a lifetime of crushing awfulness?

Who hides their true self in fear?

Who are the victims of this?

Who dies?

I do.

Your Son does.

Your Daughter does.

Your Husband does, your Wife does; Your Brother, your Sister, your Aunt, Your Uncle, Your Mum, Your Dad, your Cousin, your neighbour, the kid who sits in the corner of your class does.

Autistic people everywhere.

More than the 1/100 that the National Autistic Society rolls out every time they make a statement.  More than the 1/56 figure that the US CDC announced in April of 2018.  These numbers account for diagnosed people and even then they are guesswork, because nobody has ever properly tracked the number of Autism diagnoses.  And they don’t account for all those people who have either slipped through the net, or didn’t even know there was a net to slip through because they have spent their lives furiously MASKING.

Autistic people die, according to research, on average, between the ages of 35 and 56.

Why?

Why do you think.

The words in this article are Autistic people speaking.

People from all over the world, yet with a shared experience.

People from every country on the planet, hiding in plain site, who often have done it for so long, that they might never find a way out of it, if they even realise at all that not everybody is doing what they are, that feeling as lost as they do is not natural.

That they shouldn’t have to be so lost inside.

Don’t let these words stand as an obituary.

Let them stand as a monument to a world that chose to embrace difference.

Not punish it…

I was going to leave this there, but I have one last thing to share.

A quote from a comment on my Facebook page.

A little flicker of hope in the darkness of everything that has come before.

Welcome to Neurodiversity, Sue:

“So, I’ve been thinking a lot about this.

I am loving this topic.

I’m late diagnosed (at 38), as is my husband. Diagnosis has made our lives come into focus and I now get why life is so hard for me. I am a master masker and suffered awfully from mental health issues – but I now believe that they are the result of sensory overload and masking that I just never understood.

Maybe we’ve completely got life wrong. Perhaps there are way more people on the spectrum than we realise. Perhaps they’re lots of people suffering from depression, anxiety and addiction, don’t really have ‘mental health issues’ but are suffering as a result of living life with a mask on that they didn’t realise they had on and not know what a massive effect the sensory stuff has on their bodies, making them sick mentally and physically?”

Every time I’ve reached what I feel is the end of the line, every time I waver on the point of breaking and giving up this battle, this fight for our place in this world, because it’s so tiring when every day you look and see an insurmountable tidal wave of opposition that stands ready to wash over you.

Every time this has happened, there is an Autistic person, who with an unwitting comment, who has had a light-bulb moment, who has thrown me a line, recharged my battery and sent me on my way again.

This Mask will break, it will not break me.  This world will one day relent to the pressure and enough hearts and minds will open that the fight will be no more.

It probably won’t be in my lifetime, or yours, maybe in our children’s or their children’s.

But one day.

#TakeTheMaskOff

Source: We are not OK – The Autistic Advocate

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