Interview an Autistic – with Neuro Poppins

I have no concept of gender in myself. I’m just what I am. I know I’m a biological female, I like and dislike things that are stereotypically seen as masculine/feminine but it makes no difference

Hi, I’m Neuro Poppins and today I am interviewing myself! 

How did you end up getting diagnosed and what age were you? 

I was an adult, age 36, and I referred myself through my GP for an assessment.  I’d always thought I was autistic but some of the criteria didn’t fit (because it was based on autistic males) so when the female research started coming out I just cried and cried because it finally showed that I’d been right all along and that females present differently and can mask our autism traits, which previously professionals didn’t think was possible. I always thought if I can hide my ‘tics’/stims for short periods in public then I can’t be autistic because apparently you can’t control these behaviours. I thought because I forced myself to make eye contact I couldn’t be autistic. There were so many things like this that I’d read meant I couldn’t be autistic. I thought if no one can see autism in me because I’m hiding it then can I really be autistic? But I consistently looked up autism throughout my life because it was the one thing I felt explained me the most.

By the time I was in my 30’s, I’d reached a point where I was getting older and my ‘quirks’ and ‘mistakes’ were becoming too much for me to handle anymore. Being young these traits could get overlooked and even forgiven, but as I was aging people were less tolerant of me and the misunderstandings became more troublesome. I lost so many jobs, relationships and respect from those around me and I was struggling to get by but no one could accept that I wasn’t doing it on purpose. I was told I need to try harder, listen better, change tactics, grow up or believe in myself, amongst many other things. I couldn’t seem to get through to anyone that I can’t cope and I’m trying my best and that I really can’t change. I was exhausted but I kept going, job after job, misunderstanding after misunderstanding, failure after failure, embarrassment after embarrassment… it was awful. I knew there was something different about me, must be my brain or my IQ, because everything was so difficult and challenging and no matter what I did I couldn’t improve. What worked for others didn’t work for me. I felt like a failed human. The future worried me. I finally put myself forward for an assessment and it was a long hard process, overwhelming and distressing, and then lockdown happened and it got delayed, my mental health declined further and I couldn’t function anymore in work, lost my job, lost people in my life, and couldn’t even attend my assessment interview because I was so bad by the time it finally came around. I had to start all over again and go through the assessments again which was very difficult when I had so little energy left and felt so broken. I finally got my diagnosis though, but it was too late, I’d lost everything. Now I’m unemployed on benefits and trying to heal. 

How would being diagnosed sooner have affected your life?

I could have had the disability recognised and got the right support and respect and understanding. I would have felt seen. I could have advocated for myself in the workplace and help others understand why I’m struggling. I could have had accommodations made, I could have felt more comfortable and able. I could have had better relationships with family and they could have had the support they needed to help me. I don’t know, life could just have been different. Less mental anguish and exhaustion. Maybe I wouldn’t have been medicated for anxiety and depression, maybe I’d have found ways to socialise that didn’t harm me and make me feel so alien. Maybe I’d have got better results in school and go on to find some kind of purpose in life. I wonder these things all the time, but I’ll never know how things could have been. Maybe if I’d been diagnosed as a child I would have had new problems, like a smaller world because I wasn’t forced through neurotypical landscapes? Maybe I would still be lonely and isolated. Maybe there are some benefits to a later diagnosis. If only I had a time machine! 

Looking back in childhood, what were the signs? 

I lined my toys up, I got so lost in the details and could play with a stone or a feather for hours and prefer solitary play. I didn’t like social events like parties or sleepovers. I had tics/stims, I repeated words and phrases. I was shy and quiet and didn’t like attention. I was disorganised and had no concept of time passing. I couldn’t read, tell the time or do simple tasks like other children and teens, I was slower at everything. I had restricted interests, I was introverted and avoidant. I had meltdowns when pressure was put on me. I was afraid of people and would complain that I don’t feel like other people, that I’m different. I never knew what to do or how to act, everything was difficult and felt like it wasn’t made for me. I didn’t get pleasure out of the same things others did. I didn’t like change and couldn’t adapt to things and I couldn’t follow instructions or conversations. I just felt utterly lost and alien.

How has the diagnosis changed your life?

It’s been both a blessing and a curse. I feel like I’ve found the answer. But the answer, as much as it helps me, isn’t good either. I can’t change being autistic, I can’t ‘improve’. The problems I have will always remain. The only difference is that I know why now. I can explain why I struggle and I can in return be understood. But it doesn’t really change anything, I’m still autistic. I always was autistic. Just now I can change the narrative of my life from ‘being a failure’ to ‘understanding why I struggle’. It changes my perception of myself but it doesn’t change who I am. It can help others change how they see me too and hopefully over time I will find new friends and form new relationships and hopefully recover from this exhaustion and find a job I can cope with and even enjoy. 

What does being autistic mean to you?

Being autistic means to me that I think and experience things differently to most people and in order to connect and understand each other we need to bridge a gap and find new ways to communicate. The differences between us can sometimes alienate us from each other and it is usually the autistic people who suffer most. The world is a mostly neurotypical world and I want to be part of it and but I know I need to learn ways to express myself so that neurotypical people can understand. It is up to NT’s and ND’s to bridge this gap together and help each other learn. It can’t be one sided. I’ve lived my whole life not feeling understood and like an outsider so I don’t want that to continue, but the only way to connect is by trying to connect even through hardships. Some of the best people in my life are neurotypicals and I don’t want a life separate from them, I need them, they open my world up and I really appreciate that. I also want to find more autistic friends, I want the best of both. I’m greedy! 

Do you feel more confident now expressing yourself/advocating for yourself?

Yes, I feel much more confident because I feel ‘my ways’ are validated now with the diagnoses. Rather than people thinking I’m a confused or weird person when I explain things they are more likely to listen now and think critically about the fact that I really do think differently about things and that I am not trying to be weird or different. My voice is valid and it may take other people more time and understanding to see why I’m experiencing things in a different way to what they expect. I feel the diagnosis gives me more space in life and social settings. I also feel it gives other people more time and space to think in too, rather than just shutting off thinking there is something wrong with me that I need to relearn. It provides a basis for listening to each other and allowing us all to try harder to explore differences and accept them rather than avoiding it. There’s more reason to try to connect now. It’s not easy though because I’ve spent my whole life feeling alien and trying to connect and being dismissed, so I have a lot of negative experiences to try and see past. I have to remind myself that people haven’t wronged me on purpose, they just didn’t know, same as me. Being misunderstood constantly and feeling to blame that I haven’t been able to get people to understand me has meant I have a lot of negativity wrapped up in expressing myself. I’ve been hurt so many times and blamed for things going wrong, but it was often misunderstandings because of autism. It’s always been left to me to bridge that gap but I’m autistic and am at a disadvantage, at least now neurotypical people can slow down to help accommodate me rather than leaving me behind. 

Has masking helped you?

Masking has helped me as well as damaged me. I can’t give one answer to this. Masking has meant I’ve got jobs, I’ve attended socials, I’ve had relationships, I’ve succeeded through interviews, I have attended appointments etc. But at the same time it means no one has got to know the real me because I’ve hidden myself, which has made me feel more alien and isolated and lonely. It also meant I went so long without being diagnosed cos no one saw how badly I was struggling. My mental health has been shocking and no one could understand why, my life looked fine on the outside (well, mostly). I have had jobs, friends, a house, I pay bills, I’ve pushed myself and sometimes succeeded. But behind all that I was distressed, out of depth and exhausted. I’ve pretended to be happy to fit in, I’ve acted like I have got pleasure from social activities when really I wanted to run away and never go near those people again. I’ve tried to have sexual relationships because it was the norm, but I have been traumatised by them and now have PTSD. I have put myself through awful experiences because I thought I had to. When I could have been living a different life that was good for me as an autistic person. Who knows where I could have been in life had I done things that pleased me rather than everyone else. What would I look like without trauma? 

Do you tell people you’re autistic? 

Not yet, no. Most of my family know and I told a couple of friends, but it hasn’t all gone well and so I decided I need more time before I ‘come out’. I also worry that it could put some people off connecting with me. And I’m not ready to let go of masking yet-it’s helped me so much and I don’t think I’ll make friends without masking at least a little bit. 

If you could go back in time and tell child you anything, what would it be?

I would tell her yes she really is different but that doesn’t mean you aren’t also the same. I would tell her there are other girls like you and that you can be yourself and people will love you and you will have real friends one day. I’d tell her everything is going to be OK and she won’t always feel so scared, and one day when you learn to tell your story people will listen and good things will come of it. One day you’ll be able to explain what’s been happening and in doing so you’ll help other girls like you. 

In what ways did you present differently to others growing up?

I wasn’t a stereotypical girl. I hated dresses or skirts or anything feminine. I didn’t like pink or ‘feminine’ colours or patterns like floral or love hearts. I liked baggy clothes and quite neutral colours and styles. I didn’t play house or play with dolls, I preferred to play with anything about animals, or I would just sit in my room and fantasize about imaginary lands (I still do this today, I have an incredible life inside my head filled with different characters and animals. The storylines are incredible and I might try to turn these into short stories for the public one day). I didn’t ‘chat’ like other girls. I liked physical activities and games or solitary adventures. I felt uncomfortable around other girls as I felt different to them so this made me shy away from other females and I subsequently ended up hanging out with males more and found that more comfortable. Conversations didn’t flow like other girls conversations seem to. I still struggle with this, but I am putting more effort into female friendships now as I realise I need females in my life. But I find it challenging. There was just this constant state of feeling out of depth in an alien world, I could never put my finger on what the problem was and neither could anybody else, but it caused problems. It was really hard to navigate. 

Are you LGBTQIA+?

I used to say I’m asexual as a way to attempt to describe that I don’t like sexual intimacy or contact, but now I just say I’m straight and dislike sex. I’ve been confused in the past and wondered if I might be a lesbian (lots of people think I’m gay because I’m not a girly girl and not wanting to have sex with men), and I have experimented in my teenage years and early twenties, but I am definitely not gay. I am an adult human female and how I present or act is irrelevant. I don’t like sexual intimacy at all but I have had a number of boyfriends (which I have found challenging) but I hope I won’t be alone forever. I would like a life partner but without the sexual contact, and I would prefer a male life partner as I am generally more comfortable around males, especially for sharing a bed/cuddles, which are my limit on physical contact.

Being gender nonconforming how do you feel about gender expression?

I think that anyone should be able to express themselves any way they desire without it meaning you have to fit into a particular box/category. A male can be feminine, and a female can be masculine. I mean, what even is masculine and feminine, really? They’re just human traits. Why do we categorise things as masc/fem? A gay man can be a typical bravado male, and a lesbian can enjoy make up and fashion. A transperson can express themselves anyway they like too, expressing masculine or feminine attributes isn’t what makes you trans though as anyone can express masculinity or femininity. That would be conforming to stereotypes and I find stereotypes harmful and constrictive. Being a feminine man doesn’t make you gay/queer/trans. Being a feminine man is simply being a feminine man. And the same goes for masculine women - still just women! People constantly mistake me for a lesbian or a tomboy because I don’t express typical femininity, but I’m just a female and how I express myself has no relevance to my sex. I also have no concept of gender in myself. I’m just what I am. I know I’m a biological female, I like and dislike things that are stereotypically seen as masculine/feminine but it makes no difference to me. These things are just ordinary traits and how we present to the world. But how we express/present ourselves changes over the course of our lives in so many ways, I’m always changing and evolving. 

I also think because I’m autistic I present this way. Autistics are generally nonconforming in many ways, and gender being just one of them. Expressing gender nonconformity is a very typical autism trait – it doesn’t necessarily mean we’re LGBTQIA+ (although some are, of course), it just means the way we present isn’t typical of sexist and regressive sex/gender stereotypes because we don’t conform to these social constructs, and nor should anyone feel they have to.  

What do you understand about the overlap between autism and gender diversity?

I think autism presents differently to neurotypical development/expression of self. I think it’s important for autistic people to consider autism if they are going through gender distress we are more prone to developing comorbid conditions or coping mechanisms. I wonder if some young people, girls especially, are being mistaken for having gender related distress when it is in fact related to autism. Especially if they are currently undiagnosed autistic. Autistic people struggle with a sense of identity – this is common. So it’s not far-fetched to consider autism being a huge part of that gender distress. I’ve been really shocked and disturbed to find out that adolescent girls are going into gender clinics and the doctors and therapists are recognising possible autism in them but they are not allowed to address it because it is now considered conversion therapy to do so. Mental health exploration is vital to understanding any type of distress in a person, so I just can’t believe talking about it is being criticised as harmful. Autistic females already don’t get diagnosed or we get misdiagnosed and end up in really poor mental health situations all because we are struggling with unrecognised autism. How is recognising autism hateful?! Yeah, I find this hard to swallow. 

Autistic people are more likely to be gender non conforming/LGBT+, and vice versa, but we also are gender nonconforming simply because we are autistic. Autism expression doesn’t conform to societal sex/gender constructs. This needs to be explored as a proponent in gender expression in autistics. Explore the link!

How important is autism identity to you?

It’s very important. I searched my whole life for what was wrong with me and finally discovering I’m autistic has helped me realise nothing is wrong with me, I’m simply autistic which explains my differences and challenges in life. It’s been very helpful for me and it’s also been helpful to those closest to me too, as we all have a more solid foundation to work from now when problems arise. I feel stronger in my sense of self and I’m more comfortable about who I am now. I don’t need to keep a mask on anymore (though I still mask/camouflage anyway, but I’m working on this!), but I don’t have to keep up this pretense that I’m something I’m not – that’s a big weight lifted! It explains everything in my life. All I had before was questions but now I have answers. It’s a huge relief. But it’s also hard to come to terms with. I’m still getting used to it to be honest. Ask me again in a year and I bet I have a new answer. I’m constantly evolving so who knows… 

Does gender expression feel different to you now through the lens of autism?

Yes, now that I realise I’m autistic I understand why I don’t conform to gender stereotypes – it’s not because I’m a confused-in-the-closet-lesbian or really a boy, it’s just that I don’t express gender in stereotypical ways. I’m simply expressing autism itself. Everyone can RELAAAAXXXXXX. Ha! Obviously, I know everyone’s experience will be different and this is just mine. 

What would you like to say to other autistics?

I’d like to say that I’ve been through a roller coaster in the autism community. It has been positive in most ways but also negative in other ways I didn’t expect. What was once a welcoming open minded and accepting community has now become narrow in some of it’s views and inclusivity and I’ve found this hard. We are all struggling in our own unique ways and often have other mental health conditions so we need to be kind to each other and also kind to the neurotypicals in our lives who are trying to support us. We all need to help bridge the gap between NT’s and ND’s, it’s a two way street. I see a lot of negativity towards parents and I see shutting down and censorship of people who ask questions or express themselves and it’s not accepted by others. There’s a lot of name calling and negativity. I know this happens everywhere in the world, but I’ve seen a big shift in recent years online where there is less acceptance and the online mob is just awful and often directed at people based on misunderstandings or a lack of knowledge. That’s why I’ve started my blog and the Facebook group ‘Autism and Identity Q&A’. I want to help connect again in a positive light where we can talk and discuss things respectfully and learn from each other, rather than trying to shut each other down. I’ve lived a very lonely life and I don’t want to stay in that isolated place, I want to break out of it and connect with anyone who will have me, and I’d love to share this adventure with everyone else, so come join the group! 

What would you like to say to neurotypicals?

Don’t shy away from trying to understand me. I’m understandable if you listen and give me a chance – I just might take longer to get to my point cos I find face to face conversations difficult due to social problems and articulation. But I have cool stuff to say! And I can eventually make coherent sentences that you will understand. I have genuine, valid reasons for thinking the way I do that only become apparent to you if you open your mind to how I express myself. And it can be hilarious at times whilst I stumble out loud through my thought processes and no, I don’t mind you laughing! So let’s laugh together and have an awkward, rambling conversation? 

What is your biggest personal challenge right now you’re working on?

I am working on communicating. I started journaling to help me process things in my life and help me to articulate my experiences and thoughts. It’s been really helpful and I decided on a whim one night to just start a blog too, so here I am! I’m trying to learn how to tell others what is going on in my head now I know I’m autistic – I want others to understand me and I want to understand them better. It’s very challenging because although I know I experience things differently to others I don’t actually understand where these differences lie or how to describe them. So it’s a learning curve and I’ve already made a ton of mistakes. But onwards and upwards I shall go! 

Oh, and critical thinking! This is really helpful for thinking through problems and having conversations. It can help you avoid a whole lot of problems and misunderstandings. I am better at articulating when writing/typing than face to face. So I’m practicing journaling/blogging as an aid to help me articulate my inner world.

What was happening in your life at the time of being assessed?

My life was a huge mess! I’d reached rock bottom and couldn’t function anymore or mask my problems. I was either exhausted and broken or a raging mess that was very volatile. There was no inbetween balance. I had to try to avoid all situations for fear of imploding and losing control. I was still battling going to work but I couldn’t function while there, especially socially. I could barely speak a word to anyone, I couldn’t hear what was being said to me, I couldn’t follow instructions or complete my tasks on time. I was having complaints made against me. I told my employer I was struggling and was also going through another medication change and it’s really thrown me and I’m struggling socially. I’d had 2 weeks off the year before during another medication change that was just so horrific I wanted to die. But then it was “back to work and suck it up”. I just couldn’t cope anymore. I felt like no one recognised how bad I was and just thought I needed to pull myself together, but I’d lost the ability to pull myself together. I couldn’t stop what was happening in my mind, I couldn’t fake it and put an act on anymore. Pretending to get through each day for 36 yrs had taken it’s toll and I had nothing else to give. I lost everything. I got fired and everyone was glad to see me go. I then ended up in another bad situation with someone who took advantage of my fragile state and I lost my final bit of savings in the bank. I’m now broke and don’t eat some days because I can’t afford to. My cats never miss a meal though. I’m on benefits but I’m not entitled to housing costs as I’m a home owner, so I don’t get enough to cover any of my bills and my family have to keep helping me out, which is just awful and makes me feel worse and puts them in a bad situation, but I just can’t function right now. I’m in therapy and it’s not helping but I’m sticking to it. I journal which helps me to process things in my life and feel like I’ve been heard a little bit. It’s better than talking to people anyway as I don’t get told I’m not making sense or that things aren’t as I say they are. 

What do you think being diagnosed does for people?

I think it’s having an answer at last about all the things you struggled with, all the misunderstandings, all the fuck ups, all the confusion and isolation. It’s recognition that you’re not insane and you really have been under immense pressure. Recognition that you’ve been trying so hard and it gets you nowhere, you’re problems never cease, you don’t overcome anything. Realising you’re not a failure, you shouldn’t be having the same pressures on you as other people because your brain is different, you need accommodations and support with things, expectations in your life are different and that’s OK. 

It’s a relief to know why I’m the way I am. It’s also hard to accept that I can never be the version of me I’ve been trying to pretend I could be. Some things just aren’t possible for me as an autistic. But I can change my outlook and expectations now with the knowledge about my brain, I can alter what is expected of me so I can live a more comfortable life that could even bring me joy and calm. I’m still new to this so although I have hope held for the future but I’m definitely not there yet. 

What autism research would you like to see more of?

I would like to see more research into adults living with autism and the challenges we face. More research into late diagnosed autism, especially females. More research into how to help autistic people thrive in the workplace and living independently as adults.  And I would like to see more research into the autism identity/gender identity overlap we keep hearing about. 

Thanks for listening! I look forward to hearing what other autistics say in their interviews