Trolling

16th September 2020

Today I had my second enocunter with the troll who has been bugging me. Originally they contacted me claiming to have autism. I then saw his posts which spoke a lot about killing autistic orphans. He claimed I was dumb because I had autism and that, and I quote, “an ape shit in your brain”. I’ll give it to them, it was definitely an original insult. It did make me laugh more than it insulted me though.

The images above show the original account that messaged me. I was informed today that the account had been shut down luckily. And of course on the same day I received a message from another acount, claiming they wanted to be friends. One of thier posts had a caption about killing autistic kids, so i confronted them. They said their friend had posted the photo, so they proceeded to delete it to prove to me they weren’t a troll. She then went on to send me a picture of an ape. Now if you will remember the insult of the previous account, then you will have put two and two together now like I did. The person still claimed they weren’t thee original troll, but by their messages I think otherwise…

So as you can see from the images above, it wasn’t too difficult too figure out. I blocked both the accounts once I realised they were just trolls. Also I love the word snowflake, that gets thrown about a lot. Don’t get how it’s offensove, snowflakes just remind me of the saying about how people are unique, like how no two snowflakes are the same. Makes me laugh that snowflake has become an insult.

I’m not doing this blog post for pity, because these people and theeir opinions mean nothing to me so I’m just ignoring them. I’m doing this to show the attitudes still out there that the autistic community are fighting against. Lots of people claim attitudes are better now, and autism is accepted. Yes, attitudes are much better than they once were but it doesn’t mean we should stop pushing for change, because there are still stereotypes out there. This troll demonstrates these stereotypes. They believed I was dumb, therefore I would be easy to take advantage of. The troll uses the autism hashtags to target autistic people. Unfortunately, there will be people out there who will believe these people and the damage they will do to peoples’ mental health is unspeakable. The fact that this troll is pursuing ‘vulnerable’ people in the autistic community is sickening. The whole point of my blog is to erase attitudes such as these. Maybe, I’m too hopeful but one day I hope that the autistic commuity, and all other communities, minorities and even just individuals themselves, can be accepted for who they are. I knew that doing this blog meant I would come across trolls, it’s become a normal expectation now, which is sad. But I’m still overwhelmed by the immense amount of positivity and encouragement I have recieved. Also all the messages I have recieved, and connections I have made with others. The positivity of these people definitely outweigh and outshine the dullness of these trolls.

World Mental Health and Suicide Prevention Day

10th September 2020

Today is world mental health day as well as well suicide prevention day. In honour of this I wanted to write a post about the darker side of mental health that is often hidden, in fear of judgement. I also want to address how the system needs to change in order to help those suffering.

When I was in school, mental health was just beginning to be recognised. People put my abnormal behaviour down to hormones and ‘exam stress’, and I was treated like I was merely a badly-behaved student. 6 years down the line and the problems I faced when I was 14 (although they are easier to deal with now) are problems I still deal with today. Because mental health displays itself in such a variety of ways, and it isn’t visible, it’s not hard to understand why those who suffer from it are judged. And with a wave of mental health problems in younger people (probably due to the lack of support, appalling school system and the general stress of society), people are putting mental health down as a trend. Yes, there are a minority of youngsters jumping on the mental health bandwagon, but even if they are doing it for attention, do you not think there is a reason behind that? Do you not think maybe their exaggeration is a cry for help? Its best to approach mental health without judgement. I admit even as someone who suffers from mental health, I used to meet people who say they suffer the same and I judged them. Are they faking it? That’s always a question I ask myself about people, and really, I shouldn’t (I probably do it out of fear of me opening up about my problems and them not understanding). So, the fact that I am so guarded of my mental health, and the fact I have become distrusting is a product of the judgements of society. My point is, labelling people as ‘mentally ill’ doesn’t mean that everyone who suffers from mental illness is the same. We need to be approaching mental health without judgment, without the preconception that they are exaggerating or faking. Because when I was first suffering, I remember opening up to my tutor about my anxiety and he told me I shouldn’t self-diagnose and brushed off my suffering. It had taken me months to admit to both myself, and my teacher that I was suffering, and the idea that I was self-diagnosing, or exaggerating, or faking was heart wrenching. Being told that I’m not suffering, I’m just the same as every other teenager with raging hormones and just pushing the boundaries completely broke my trust in the system. That’s the moment that I realised the support system I had been told was around me was a lie. Day after day, we had assemblies about exam stress and mental health, yet when I came to face my problems, they were thrown in my face. Even my first appointment with the doctor was horrible. It was like an interrogation. Every detail of my self-harm had to be extracted, every painful emotion I was feeling, and then what? It’s probably hormones. I was sick of that phrase. Anyway, as many of you out there who struggle with mental health probably know, you have to keep going to the doctors to make them listen. Going once is never enough. So, if anyone out there is struggling, and has been told by a ‘professional’ be it teacher or doctor, that its nothing to worry about and you’re just overreacting, don’t listen. If you know you are struggling, keep trying, make them listen, they have to eventually. They will get it wrong, time and time again. Like with me, even after my mental health was acknowledged, the autism assessment was like being back at the doctors for my anxiety all over again. But you will get there I promise, even if it does take you six years like me, it’s worth hanging on to. It gives me hope and a reason to keep working on myself.

One of the things I haven’t talked openly about is my self-harm and suicidal thoughts. Out of all the things, this is probably the thing I’m most ashamed and embarrassed to talk about.  It’s still met with awkwardness and suspicion. It’s not something people want to talk about. It’s a hard subject because you know that by putting this info out there, you might be encouraging someone, or putting that thought into someone’s head. Again, it’s another thing people have though is a trend and that its ‘cool’ to self-harm. But I’ve never felt that it was, it was always something that I hid and I imagine it was the same for many others. It’s also met with the idea that people do it for attention. Again, it’s not, and even if people are doing it for attention, its most likely a cry for help. I started when I was 14, and eventually stopped probably when I went to uni. But it’s still something I do every now and then when things get too hard. I try to find other things instead of self-harm because it’s never something I want to do. When I first started, I didn’t have the knowledge nor the tools to know how to stoop harming, but now I do. Yes, I slip up every now and then, but it’s better than before. I do have scars on my left wrist that probably aren’t noticeable, because they are from years ago, but I can see them very clearly, probably because I know they are there. Some are hidden under my butterfly tattoo. When I got that tattoo the tattoo artist asked if I wanted to cover the scars. I covered some on my arm, but I still didn’t want it over my one of my bigger scars (mostly because I was very particular about the place I wanted my tattoo, it would have looked weird in the middle of my arm, plus I was thinking about getting smaller ones underneath. That was a bit of a tangent…Anyway, people gave me lots of methods to help me stop, like pinging an elastic band, but they never really worked for me. When I needed release, I just went straight to self-harm. Now I don’t have a high pain tolerance, I’m really a wimp with needles, and I cried when I got my blood taken for hormone testing a few years back, so it was surprising even for me that I relied on self-harm. I think that just demonstrates how serious self-harm is, how hard it is to stop and how bad you have to feel to be doing that to yourself. For me, although I don’t like pain, it was a punishment for myself, I hated myself so much that I just had to take my anger out on myself. When I was at Uni I would sometimes bang my head against walls because I was trying not to cut. But either way its still self-harm. What I would say is that to address the self-harm, you really need to address your emotions, so that you no longer need to rely on it. There are also lots of techniques people recommend that are simple. It’s about getting your energy and anger, or just general emotions out in other ways that aren’t harmful, like running, scribbling, screaming, punching a bag or pillow. I would suggest meditation or relaxation, but I know you have be pretty in control to do those things, even I don’t use those things in the middle of meltdowns. When you are feeling that stressed it’s hard to refocus, so my advice is get it all out in whichever way you can. And actually, getting my tattoos meant I didn’t want to ruin my skin anymore so that also did help.

Another thing that I experienced was suicidal thoughts. I hate this because it sounds bad to everyone, it makes everyone who cares about me cry. When it comes to people opinions of suicide, many think that those who are suicidal are selfish, they don’t care about anyone and they are just willing to leave everyone behind. That’s not the case. You also get the opposite, normally of the family of people who are suicidal, who blame themselves for not looking hard enough or thinking it’s their fault they aren’t good enough for their loved one. Both are wrong to be thinking. As someone who has been suicidal, the thought process is normally this: I don’t feel anything anymore, I feel sad all the time, there’s nothing good in my future, what’s the point of living, I don’t have the energy to go on, my friends and family would be better off without me, if I was gone they wouldn’t have to worry about me anymore, I’m a disappointment. So, no, it’s not that people don’t care, it’s that they don’t see a way out. I’m not afraid to admit I have been walking back from school (or walking back when I should have been at school- I bunked extremely frequently) and I have crossed a railway bridge and thought you know what, wouldn’t it just be easier than living. Yes, I felt like that but the thing that stops me every time is my family because they are more than worth living for and it would break their heart if they even knew I was contemplating it. But I’m lucky that I have that. Some people don’t, and they don’t find the energy to push on. I’m lucky that I did have the will to live, and that I was never lost and low enough to completely give up, because imagine how awful it must have been for those who did live like that, and who did give up. So first of all, I would like to say, if you have lived through suicidal stages, then don’t give up yet, you lived through that stage, you are strong to have lived through that, and if you can live through that then you really can live through anything. Being suicidal is like as low as it goes, so surviving that means you can do it, even if you don’t think you can. Secondly, if you are currently feeling suicidal, it seems like an endless pit of emptiness, I know, but dying means you never get the chance to find out if it can get better. There was a story I read on Facebook about a man who jumped of a bridge and survived. He said as soon as he jumped her regretted it, but he couldn’t change it. He now spends his life helping others who went through what he did, and he is living proof that it gets better. If you are struggling, keep pushing and talk to someone, no matter how embarrassing it is, they will care even if you think they won’t, even if they are a complete stranger.

To anyone out there who thinks they know someone who is feeling this way, just reach out to see how they are doing, let them know you care. It goes a long way just speaking to someone and it can even save lives. There are also services out there to help:

  • Samaritans- 116 123- a helpline open 24 hrs
  • Stay Alive App
  • A&E- they will provide a crisis team for you

It’s Time to Talk

6th September 2020

I haven’t posted in a while because I haven’t had the energy. I was also busy looking after the dogs and the house while my parents and brother were on holiday, so I simply didn’t have time. The whole situation was a change for me and any change takes time for me to get used to. Even my parents returning has unsettled me slightly because it’s getting used to the house being full again. I won’t lie it has made me more prepared and even eager to move out because having my own space is really nice. But I do love having my family around me.

There isn’t much I can think of to write about partly because there is so much on my mind that I could write about that my mind goes blank. I’ve also recently learnt about how autistic people struggle with executive functions which could be why I struggle initiating tasks sometimes (I will write another post about executive function once I learn more about it). Other things that have happened recently is the cancellation of mine and my boyfriend’s holiday to Finland which was upsetting for both of us, and yet another change to get used to. I’m also starting Uni again soon, but my Uni has decided to cut the English department staff in half. They still haven’t made a final decision as to which staff are leaving so, I’m going into my final year not knowing if the modules I chose will even go ahead. Going into the year with uncertainty is obviously a big problem for me. So, this is causing me a lot of anxiety but there’s nothing I can do so I’m just putting it to the back of my mind.

I also had a call the other day from a service called Time to Talk. I had been referred to them via my doctors for counselling which I think I need. They had called me once, but I ignored it because the number was unknown. I basically never answer the phone so if the number is unknown then you have no chance of contacting me. Luckily, they left a voicemail even though they weren’t supposed to (no idea why but the woman said halfway through the voicemail that she just realised she’s not allowed to leave a voicemail and then hung up). They called a few days later and I was about to answer but I couldn’t. Luckily though, the lady rang a second time straight after which put enough pressure on me to answer the phone. This was a massive achievement for me because I hate talking on the phone for some reason (I have no idea why). She started by asking for a bit of background and about my previous counselling experiences. I told her about my previous counsellor who got me hormone testing which all came back clear and then ended the sessions with the words “I don’t know what’s wrong with you”. The woman on the phone was very supportive and told me that the counsellors I had seen are unwise and that there is nothing wrong with me. She then advised me that the Time to Talk service wouldn’t suit me because I could end up getting a counsellor who maybe doesn’t understand autism. She suggested some other services like Lifelong service or West Sussex Learning Disability service. She said these would be better as they have clinical psychologists (yay I’ve been upgraded from counsellors to psychologists). She said she would have to contact my doctors to get them to refer me, so we have basically gone around in circles again. She did mention to me that sometimes doctors don’t understand which service is best for a person, which I totally agree with. My experiences with doctors have been appalling. There are too many incidents to count, though I have found a doctor now who understands me so much better and he helped me out a lot. I remember going to get referred for an autism assessment and the woman doing it was just ignoring everything we said, and I was silent because I hate doctors and tend not to talk to them (yes, my mum still has to come with me). Maybe I would have been able to speak to them if I hadn’t had such bad experiences with them, just saying. Anyway, she made me look in her eyes and told me that I have to speak to her in order for her to understand. I hated her I felt like running out of the room. She ended that appointment by saying I probably wouldn’t get referred. Well I did in the end…. Because thankfully the actual experts (from the limited info from the doctor herself) managed to work out that I probably did have autism. The questionnaire they sent me then also suggested I have autism, so I don’t know how the doctor was looking at me (completely silent and overwhelmed with anxiety) and thought oh yeah, she looks fine. Anyway, I’ve gone off on a tangent. Basically, the lady on the phone told me that finding services, especially for autism, is like a maze. And it is. I’ve been stuck in this maze wince I was 14, but finally I might be able to get some help. I had always said I wouldn’t do talking therapies because of the failure of the previous counsellors, but if I eventually get referred to the correct service, with people who understand me then I would love to take any help I can get.

I want to end on some of the positive things the woman said to me. She was lovely and ended up giving me a bit of a pep talk which helped. She gave me multiple analogies about how everyone is different. She said think of all the billions of people that have lived on this earth and no two people have the same fingerprint. The same goes for us and our brains, we are all unique. She then told me that when you are young everyone is desperate to fit in, but she said that as she has got older, she has gone the opposite way and doesn’t want to be the same, she would rather be unique, so being different isn’t a negative thing, in fact it’s just a part of life. She also told me to never put my happiness in the hands of other people. She compared it to having a diamond and asking a stranger to look after the diamond. She said, “your happiness is valuable, don’t leave it in the hands of people you don’t know”. I thought that was good advice, as cheesy as it is, some people out there might be in need of words like this.

Uni Part 3- The Positives

22nd August 2020

After all the negative experiences of Uni I have shared on my blog I thought I would write one more focussing on the positives of uni. By doing so I just wanted to reassure other autistics out there that if you want to go to Uni, it is possible. Despite all the negative experiences, I have learnt a lot and I still stand by my choice of going to Uni. After posting my previous blogs, I’ve had a lot of other autistic people comment on how they were unable to attend Uni because of the severe anxiety or due to having a difficult time at school which affected their opportunities. I too had a difficult time at school but luckily for me, my grades weren’t affected.  So, on a wider note, I would also like to say, I understand how difficult the concept of Uni is for an autistic person. Personally, I think the education system needs to change so that education becomes more bearable for those who struggle with the education system. Maybe one day it could change so much so that people like me could not just survive school, but even thrive there.

Anyway, one of the biggest positives I got out of going to Uni is a growth in confidence. I have always been shy and self-deprecating. The closer Uni got, the more I thought I wouldn’t be able to do it. But I proved to myself that I was able to do and that has given me a lot more self-confidence. It has also given me confidence for the future. Living alone was so scary for me. I’ve always relied on my parents to help me through meltdowns and burnouts, they have always been fighting my corner. So, living alone, I felt so vulnerable. Although I had some help and support from them, I still managed all my meltdowns and tough moments on my own. It gives me hope that I will be able to manage myself in the future. It also allowed me to learn more about myself. After going to Uni, I recognise more triggers and just generally have a better understanding of myself.

Also, living on my own meant I was out there dealing with social situations by myself. Yes, I encounter a lot of conflict, but I learnt how to deal with this. Yes, I had tonnes of support, but meeting new people and dealing with conflict means that I will be more prepared, and less shocked if I were to come across people like that in the future. I remember crying on the phone to my parents and they were explaining to me that I was finding it so tough because I’m mixing with people I wouldn’t normally mix with. I was dealing with types of personalities I had never encountered before, I was dealing with extremely confident people who I tended to steer clear from for most of my life. Although it didn’t go well, at least I can say I did it, and I now have experience of dealing with people I wouldn’t normally mix with, which is a key skill I will need when I start working (will cross that bridge when we come to it, because right now working seems like the scariest thing in the world). But socially, I didn’t come across just bad people or people I didn’t get along with, I also made some amazing friendships. Not only that but I also got into a relationship with an amazing guy. All of this would never have happened if I hadn’t gone to Uni. So, I’m beyond thankful for the friends I’ve made. Besides, I still had all my friends back here at home who were all very supportive, so I was never completely alone.

I can’t forget how much I have loved my course as well. I have always loved English and learning and researching Literature has been amazing. I’ve learnt so much because the thing is with English is that it incorporates almost everything. I learnt not just about the literature but about politics, history, philosophy and just generally how society works. I think it was the best choice I made to study English because it’s something I never get bored of.

Finally, the most important part is the fact that I’ve done things I’ve never done before. Well actually all the things I have done up until have ben things I never thought I would be able to do. During my mock GCSEs (I failed most of them because I refused to do them….) I never thought I’d pass my GCSEs (particularly maths), but I did. Never thought I would be able to cope during my voluntary expedition to Cambodia which was 4 weeks away from home. But I did it and it was one of the best things I ever did. I never thought I would be able to get out of ICC even though I hated it, but after Cambodia, I had the confidence to move to Hazelwick Sixth Form. Never thought I would cope with A-levels, but I did. Never thought I would manage to get all the way through Uni, living away from home but I did. Never thought I’d make friends at Uni but I did. My confidence became on so much of a high that I even managed to get my first tattoo (and then two more) which I never thought I’d manage (not good with pain at all, and not good at talking to strangers). So actually, when I think about it, all these things I never thought I’d be able to do, but I just went and did them anyway. So, what I would say to anyone like me is, even if you think you can’t do it, if it’s something you really really want, then go for it. That’s not to say you need to push yourself into absolutely everything because that can become too tiring. Like for me I got fed up of trying to do things myself at Uni which I couldn’t do, like going shopping (shops are a nightmare). It’s getting the balance between not feeling embarrassed to admit you can’t do something, no matter how stupid people think you are (which you definitely aren’t), and believing that you can do something if you really want it.  For example, I still don’t answer my phone when people call, I never answer the door even if it’s my delivery, and I almost never go to the shops by myself, people might think that’s stupid but I’m not afraid to admit that I can’t do those things by myself. Maybe one day I’ll be able to but I’m willing to take all the help I can’t get in the meantime. Because of all of those things I can’t do I never thought id be able to do the bigger things that I desperately wanted to do like Uni, but I did. So, my point is to not put yourself down and immediately write things off. I’m still working on taking my own advice, because I have a very negative mindset when it comes to myself, so I still write things off when I shouldn’t. But one day I will get there.

Alcohol and Autism

18th August 2020

So, it was another long weekend and I’m taking some extra time than normal to recover. I had two occasions over the weekend and both of them I chose to drink. Admittedly, I sometimes use alcohol in order to bring out my more social side, even when I am around friends who I feel completely comfortable with. It doesn’t take me much to get drunk and I tend to lose my filter more quickly when I’m drunk. Sometimes this happens without the need of alcohol. If I’m having a big gathering like I did with my friends on the weekend, for some reason I get like this nervous excitement. I end up going a bit hyper and I become loud (I say loud, but I mean louder than normal) and I think that sometimes it can be a bit annoying for people. At the gathering with my friends, alcohol just enhanced this behaviour and I just became so hyper, I wouldn’t sit down for long. The problem I have with using alcohol is the hangover and embarrassment the next morning. When I say hangover, I don’t necessarily mean hangover from alcohol, but also in terms of a social hangover. Most times after a gathering, the next day I spend just lounging around in bed feeling anxious and so exhausted. This weekend it was even worse and I’m taking a couple days to recover due to the amount we had going on at the weekend. I’m now just doubly anxious about the two nights I have probably managed to embarrass myself.

I have done a bit of research into alcohol in relation to autism and it does appear common for those with autism to use alcohol as a coping mechanism. Matt Tinsley shares his experience of this:

‘”The chief aspect of my autism which resulted in extremely heavy use of alcohol to cope was a near constant sense of anxiety. I also was socially awkward and discovered alcohol turned me into a much more relaxed person. Of course, I was unaware of my autism at the time and it’s only in retrospect that I can understand why it worked so well.” Alcohol for Matt enabled him to function in the workplace and develop and maintain relationships. Alcohol actually helped him to be less affected by sensory stressors and it helped manage his anxiety’

(https://network.autism.org.uk/good-practice/case-studies/autism-and-alcohol)

I definitely find that alcohol does eliminate the anxiety of social situations, yet it removes my ability to filter my language. In the end I end up talking too much. For some people this means they are able to function ‘better’, and there has been suggestions of a correlation between alcoholism and autism as it acts as a coping mechanism. For me, although I use it as a coping mechanism in social situations, I make sure to not end up drinking all the time. I only ever really drink when I’m in a social gathering or situation. Besides, I’ve learnt that while drinking is fun and allows me to be sociable, I still wake up the next morning regretting things I’ve said. I also found that at Uni, once I started drinking and becoming social, the people I lived with expected me to be like that all the time, and when I eventually needed a break, they couldn’t understand why. So, it ultimately put more pressure on me to be sociable. So, I’ve kind of learnt that while alcohol is good every now and then, for me if I’m going to drink, I still needed that time afterwards to recover. I never coped with the constant drinking at Uni.

So, as with everything, alcohol is good in its limits. Right now, I’m going to go finish mulling over every single thing I said or did that I think was embarrassing on the weekend, because I’m the best at overthinking. I still had fun which is the main thing, but I have come to terms with having to cope with the day after. I just need a little more time to process everything than the average person would and that’s okay. For anyone who feels the same, all I can say is, you can drink and have fun, as long as its making you happy, but don’t feel bad if you need a couple days rest after. Not everyone can keep up with long periods of socialising and that’s okay.

Uni Part 2- Educational Malfunction

13th August 2020

Academically, I love uni. I get to do the things I love doing the most- researching and reading. I am studying English Literature, which I have loved since I was a kid. I’m told by my mum that I made her read to me every night when I was young. In primary school I attended gifted and talented courses for English which I loved (for the most part). I do write sometimes but I think I’ve lost the knack for it as I’ve got older. I wanted to be (amongst many other things) an author when I was younger, but when it came to choosing my degree my choices changed so many times. I originally wanted to do Art, then Law and then my last and final choice was English. I think it was a good choice as it’s a nice balance between the two. I thought by doing this course there would be lots of people I would have common interests with. Turns out I don’t have many friends on my course. In fact, I only have one solid friend Lucy, who is amazing. I met her on the first day of class and we have been friends ever since. I’m not sure I could have got through Uni without her, so thank you Lucy! So, I had always wanted to go to Uni for as long as I could remember, because it sounded amazing. It sounded nothing at all like school, and in a lot of ways it isn’t. But it didn’t turn out into the dream I expected.

I did find first year tough. You have so many other things that you are getting used to that keeping on top of the ridiculous amount of reading gets lost among the other worries that  come with moving away from home. I also was shocked at the fact in my course we still had to do group presentations. That’s a nightmare for me. So, from the start of Uni me and my parents got in contact with the support facilities within the uni. I went for meetings, which I had to take my mum to because obviously I’m not going to talk to a stranger about my struggles. At the time, I had only just been referred for an autism assessment, but because I had mental health issues, I was eligible for help from ASDAC (Additional Support and Disability Advise Centre). I had to get a doctor’s letter to prove my mental health issues, and I had a meeting explaining the help I could be offered. The first guy I met on my initial appointment was lovely, and he really made me feel like they could help me. However, the second guy I met I did not like at all. He had a condescending tone and in the meeting, he poked fun at a guy he had an appointment with, who clearly had Asperger’s (even I could just tell from the story, and this guy is meant to be an ‘expert’). He told us that he told the student that he could join a society (wow great advice for someone on the spectrum who suffers socially and probably would never go). He gave examples like the ironing society who make a hobby out of ironing in strange places like ‘under the sea’ (this bit he meant as a joke, but obviously neurotypical people would pick that up straight away). The student replied saying it’s impossible to iron under the sea, which is an entirely valid point. The guy told us this story and laughed, and then proceeded to tell me it would be good to join a society. I don’t know about you but I’m pretty sure I’d rather die than join a society with a load of strangers. I was already having to cope with strangers in my course and my flat, so thanks strange, annoying guy (I can’t remember his name because he’s irrelevant) you weren’t much help. He offered me support which didn’t work because it made me more anxious (this is a common experience in my life). He took me to see a mentor, in a cupboard (turned into an office but it literally was a cupboard in the library), who was an older lady who sounded more depressed than I was. She was there to help me academically despite me telling them that I liked the academic side and cope with it, it’s the social side I don’t cope with. She talked about writing me a schedule for my reading, as if I hadn’t done that already?! So, I saw her like twice and then never went back. I also never went to do my assessment for ASDAC which would assess my needs and give the Uni funding to help me. So basically, they would get money for giving me the support they had already had me try out. The only good thing I got was permission to record lectures. Sadly, I didn’t attend many lectures, so I suppose that also became useless. And I had also told them I liked lectures, but hated seminars because in quite a few of them the lecturers would pick on people for answers. I walked out of a few seminars in the end because it was too overwhelming. So, what did I like about the academic side of Uni? Well I liked the lectures, the reading and the research. And using seminars where I was with Lucy to catch up with her. Apart from that the rest was, well, useless.

I had gone to see ASDAC on the advice of my year tutor. I hated her. She told us in the introductory meeting to contact her if we have any difficulties regarding our wellbeing. Now considering someone later committed suicide in our halls, and I happened to see the body bag, so it definitely did happen, you would think the Uni would take this seriously. We were generically offered counselling, but this was weeks after the incident. Nothing was ever really addressed. I’ve heard that even for the people living in the flat with the guy, were offered different housing, but they would have to split up and they didn’t want that. Universities need to get better at dealing with wellbeing. To be seen by the Well-being team at the Uni, it takes around 3 weeks for you to be even seen for your first meeting. The services are stretched and underfunded, so it’s not okay. I didn’t even bother seeing well-being because I knew that the build-up of 3 weeks would be enough to put me off going. It’s also highly unlikely that I would easily talk to a counsellor. If I didn’t have this problem, then I would have seen a counsellor when I was 14. Anyway, the first contact I had with my year tutor was via an unimpressed email from my first personal tutor who I didn’t bother making an appointment with. He contacted the year tutor Jessica, who emailed me telling me to get in contact. I told her my struggles and she said ‘I know contacting people can be difficult, but it is important that you keep your personal tutor, or me up to date with issues that may affect your attendance, so we can offer you support…. It would be a good idea to contact well-being… please keep in touch with you tutor in future’. I don’t recognise the tone of emails very well, so I thought this was negative, I’m not sure if it was but as someone reaching out for help, I didn’t find this helpful. I was contacting her for help and she told me I have to contact her for help, which I was already doing. Is it just me or does this not make sense? Anyway, the next time I spoke to her, before I had even sought help anywhere else, I emailed her to tell her my concerns for a group presentation. She replied by saying I should contact ASDAC (so passing me on to someone else again) and that ‘many students are anxious about group work, but there is research to show that most students perform better in assessed group work than individual assessments’. OH, IS THAT SO JESSICA. Funny that because my group assessment and presentation marks are very much worse than my individual essays. How strange, its mad that I don’t fit into a statistic? It must be the autism. Or maybe just that individuals are individuals and not statistics? That’s like saying research shows all lecturers are nice. Well they definitely aren’t all nice…Now, you’ve pissed me off Jessica. She also picked on me once during a seminar with her, now I hold a grudge Jessica, so I wouldn’t dig yourself a deeper hole. My problem is that when someone approaches me with that attitude, I turn into the person they think I am. So, if she ever taught me, I would sit there not listening with a face like thunder, because it’s easier to act the way they think you are, than spend all your energy trying to convince them you actually are struggling. I tried this in secondary school and ended up turning from being a quiet little teacher’s pet to walking out of classrooms because I had been told I was just going through a phase and I was put in facilities for ‘the naughty kids’, so that’s what I did. Luckily, I didn’t have to do that so much in Uni because the timetable is less full on, and if I struggled, I just didn’t go. I was also very lucky I got assigned a new tutor, finally, who understood.

I don’t want to sound big headed or superior, but I’ve always learned better by myself through research and reading. My attendance in my school from about year 10 onwards has been well below average. It continued that way at Uni, I would often get emails telling me my attendance was too low. What frustrated me that during A Levels I had poor attendance and still got 3 A*’s, so this attendance and grade correlation crap has always bothered me. In fact, I think I’m the other way around, the less I go, the less stressed I am, the better grades I get. So, shove that where the sun doesn’t shine Ofsted. (Rant over). Eventually I had to have a meeting with my tutor. At this point I felt myself falling back into the school system. I had been told Uni would be different, they treat you like adults, yet all I had been faced with was the same old school stuff. Luckily my tutor Diane was amazing. Without her I wouldn’t have got through uni. She helped me immensely and immediately understood me. When I expressed my concerns about the group presentation, she offered me a number of things they could do (see that’s helpful Jessica). For my first group presentation, she agreed with my lecturer that my group could go last and after everyone had left so, we would only be doing it in front of my lecturer, which was so much help. I told my two other group members and they were happy. However, as time went on, they were never in contact and didn’t appear to be doing work. We hadn’t even agreed what we would do. So, I started doing a presentation by myself. In the end Diane arranged for me and my lecturer to facetime over summer so I could do my presentation alone. This was only really allowed because my Dad had cancer. During my second year I also had to do a presentation about my dissertation proposal. This one I had to do because after emailing my lecturer she said I wasn’t allowed to do it to her only. Because it was on my own, I was willing to do it. Having said that, it was awful. I went bright red the whole time, I read as quickly as possible and once I left the room I cried and phoned my dad. I don’t do presentations, I don’t like that many people looking at me.

I think the lecturer you get really can influence how well you do on a module. For example, in the modules I had lecturers I didn’t like, and who picked on people including me (despite my tutor emailing all the lecturers telling them not to pick on me), I did a lot worse. I remember one I had this year. I turned up to a grand total of 1 seminar and maybe 3 or 4 lectures. The only seminar I went to I sat alone. He put us into groups. I turned around to my group and they started talking amongst themselves. I’m awkward, I don’t cope with situations like that, so by this point in my life I gave less of a damn and turned around and worked on my own. The lecturer came up to me and told me to work with them. I said yes turned around to them, and then when he returned to his desk I turned back round.  This pissed him off, he spent the rest of the seminar staring at me and directing questions at me and ‘my group’. I never turned up again. However, in the second term of this year I had my tutor as a lecturer. She was amazing, I was fully engaged and was barely anxious in her seminars. I got a 1st on her module and I’m glad I did, because it’s all thanks to her. Also, unlike most of my lecturers, she actually cares about my well-being and often sends me emails throughout the holidays to check up on me. I can’t thank her enough for what she has done for me. She made my Uni experience so much easier.

So, despite a crappy start, thanks to my friend and tutor helping me, I feel more positive going into my third year. I think with Uni it depends on how well you get on with your lecturers. I had a few lecturers who I really liked and going to their seminars made it a lot easier. I do think that the education system needs to change. The pressure is enough to push anyone to the edge. And when you have students taking their own lives at Uni, you need to take a step back and look at why, and what’s gone wrong. I love learning, I should be the perfect person for education because I just love learning. Yet I hate the education system. Isn’t that enough to hint that there something wrong with it then? That’s because it’s no longer about learning, its about grades, statistics, meeting the correct standards, aiming to be the best school or uni.  It’s about teaching us to be ‘successful’ so that the institution you went to can use you to advertise. When I got my A level results (I had been predicted ABC and told to lower my Uni standards when choosing the Uni’s I wanted to apply for), I was approached by a teacher who suggested I could go to better universities than Portsmouth, even to places like Cambridge (bit too late considering you need entrance exams), because wouldn’t it look so much better if their top pupil had gone somewhere ‘better’ than Portsmouth. Yes, Portsmouth isn’t the best, but considering I found it hard at Portsmouth, do you really think I would have coped with Cambridge? I don’t think so. There’s too much pressure on kids to achieve, the rise in mental health should be enough to make everyone stop and wonder if these kids are too stressed. Even now, I worry about getting a good job, so I can get money, so I can get a house, because it’s been drilled into us since we were young that that’s what we need to do. But is that really what would make everyone happy? For someone like me, the thought of even getting a ‘simple’ job terrifies me, so when I look forward and listen to all the emails I’m sent from Uni about careers, and getting a good career, I go into meltdown because it feels too much. Its overwhelming and it needs to change. The mental health system needs funding, and the education system needs restructuring.

Uni Part 1- The Social Nightmare

10th August 2020

So, I’ve decided to do a series of blogs about my experiences of uni as a neurodiverse person. Now I don’t want this to put others off going to uni, because despite all the bad stuff I really have had some good times and learnt a lot. Plus, as someone who loves learning (weird, yes, I know), it has been the best route for me. I still think I have made the right decision, so for anyone thinking about it, you definitely can do it, even if you do come across the same challenges as me. But the challenges I have faced, some neurodiverse people won’t have faced, because ultimately its luck of the draw with the people you meet and live with at uni. Unfortunately for me, I have come across some rather horrible people, yet I have found some hidden gems amongst these people, and for that I am glad. So, I’m going to start with the depressing stuff to get it out the way.

I’d first like to talk about my negative experiences with socialising, because for me these were some of the worst experiences I’ve had. Again, I don’t want anyone to be deterred by this, but I also have to be truthful about how I’ve fund uni. Because for those out there struggling, even if you aren’t neurodiverse, and wondering why uni wasn’t as good as it hyped up to be, I want to reassure you that many people don’t like uni. I find uni is definitely hyped up. It’s all about freshers, meeting new people, getting wasted and having the best time of your life. Yes, some people experience this, and they seem to be the lucky ones (and sometimes the ones who drop out), but there are also some of us out there (like me) who didn’t get the same hyped up experience that everyone else got. In fact, most of the people I have spoken to didn’t experience uni like that either. Some people make amazing friendships at uni, and I have made a handful, maybe not even that, of good friendships but they are solid friendships and I treasure them (you guys know who you are). So, I have met some amazing people, but I’ve met people who are the embodiment of evil.

I will start with my first year of uni, where I moved into halls. Living in halls with a bunch of strangers for me was horrendous. The day I moved in, I cried when my parents left, and I was just sat in a little rectangular room that looked so bare and empty. Having to leave my bedroom which is my little safe place, was horrible for me. I did have a few friends who were going to the same uni which I was grateful for, but these friendships became complicated. For the first few weeks I threw myself (some might say I edged myself, but for me it felt like throwing myself off a cliff), into the uni experience. I went out clubbing with my flatmates, I was drinking, socialising and it was all good. I got with my current boyfriend who was a god send at uni. Even though he knew me beforehand, he understood me immediately and really helped me to enjoy uni. It was nice, I was having the uni experience and a new relationship. But after freshers died down, it all hit me like a tonne of bricks. I was completely overwhelmed, and I just needed to get away from all the sensory stuff. I needed sleep and I needed to relax, which are two of the things students don’t do. I’d had enough of turning up to lectures hung over, I just wanted to watch some films for a few days and chill out. But my flatmates liked loud music, at all hours of the night. This began to cause friction. They also were extremely dirty, which is normal I guess but I couldn’t cook because of how messy it was. The room constantly smelt. So, I wasn’t sleeping, I was socialising more than I ever had before, my anxiety was heightened, and I wasn’t eating. This isn’t a good combo for me. To cut a long story short, I got slightly annoyed at the mess and the loud music, and my flatmates thought I was annoying for not coming out and socialising and drinking with them. They ended up hating me because I didn’t join in. I told them about my anxiety, I told them about the suspicions, which were new at the time, of me being autistic. I don’t think they bought into it. I don’t know how I ended up being hated for not joining in, but I did. I ended up coming home quite a lot just to get some rest. So, the year ended badly. Around this time my Dad was also going through treatment for cancer, which didn’t help the situation. But that was my first year.

During first year, we had planned to get a flat with some of my boyfriend’s flatmates as the two of them had no one else to house share with. We all got together and found a house that was lovely, and they both seemed very nice. I was always wary of one of them who kept making comments about me reading all the time and asking if she would have to be quiet for me all the time. Now I don’t do well with loud noise, but through my whole first year I had put up with a lot of it, it took me a while to break because I was scared of upsetting people, so I rarely told them to turn the music down. So, I assured them being loud would be okay, as long as it’s not very night until 5am in the morning like in my previous flat. They were less noisy than my previous flatmates anyway and I wasn’t worried about noise, and they never were noisy when I stayed with them, so I was never bothered. What I instead had to worry about was being ‘weird’ by reading and actually doing my uni work, because that’s also something students tend not to do, but I’m a nerdy kind of person and I quite like researching so for me it was fine. Anyway, things were going well, I had my car at uni with me this year, I would give my flatmates lifts, we would spend evenings together, go out together, go shopping together. My boyfriend joined an American football team, so I spent time with the two girls on my own. We also had a guy we hadn’t met living with us, who me and my boyfriend really liked, but the other two ended up not liking him in the end. Things went downhill again after I had done so much socialising. The girls (who were supposedly best friends) ended up talking about each other behind their backs to both me and my boyfriend. One of the girls always complained about a few of us not being social enough at house parties, and my mental health was on the decline. At this point in time, I was on medication, and my Dad had just gone through a second round of treatment for cancer. So, I was very tired. This lead up to the incident. One day, the two girls went out for a run fairly early in the morning and had forgotten their keys. They decided banging on the door would be a good option early in the morning and I messaged on the chat telling them not to forget their keys again, I realised I had no reason to angrily outburst on them like that, so I apologised, especially since I came across badly over text. I thought the whole thing would go away since it was a silly incident and I apologised, but they were angry and didn’t want to let go. So, they insisted on speaking to me even though at that point I wasn’t capable. This bit gets hard to write. My boyfriend the next day went out to talk to them, and I could hear them shouting and slagging me off in the next room. I was so tired, overwhelmed, the anxiety had been building up, I had been through a tough year beforehand and it all came crashing down on me. I ended up self-harming and taking some extra pills. I just wanted the pain to go away, I didn’t care about life that that point. I hadn’t taken enough to do anything serious, but they did make me quite out of it, which is what I wanted. My boyfriend came in as this happened and decided to ring my dad to take me home. The two girls then said we should go to the hospital, so I went to the hospital with all of them there. I was at my most vulnerable, and them being there intimidated me, I was embarrassed. I went home that night after they did a few checks, and even though they wanted me to stay, the wait was too long, and it was late, I wanted to go home. So, I came home. A few days later it was one of my flatmate’s birthday and I had promised I would be at the party. So, despite how crap I felt, I thought the right thing to do would be to put on a mask and go to the party. I went and drank a lot of alcohol to get me through. I attempted to apologise to my flatmates, and I thought everything was okay. I realise now it was a bad mistake to go to that party. To them, going to that party proved that I had faked everything. I don’t know why I went, I was in a bad state, I got extremely drunk and should have stayed at home, but I thought this is what people did, just carry on. My flatmate, who had family issues to do with mental health, said the beast thing to do is get on with things, so I thought they would hate me less if I put on a mask and pretended everything was okay. Turns out that they messaged us, telling me that I had caused them mental health issues, and that we needed to talk about me going to the hospital. I said that I found it hard to talk about, at the time I wanted to block it out, I said I wasn’t ready to talk about it. They suggested I had faked it and that I needed to take responsibility for the pain I had caused them. I tried moving back into the house after this, but they did stupid things like leave our towels on the floor, break presents I gave them, cut us out of picture and hang the pictures up all over the house with us cut out of them. I had spent all of one night there and they decided to barge into my room. They called me delusional, they laughed whenever my boyfriend mentioned the hospital incident. I sat there silently while they shouted. Sometimes I would shout back but I mostly let my boyfriend talk. They asked me why I wouldn’t argue, and I just sat there silently. We explained that I was in the process of being tested for autism, which one of my housemates laughed at. So that was that, I moved back home. I went back and forth to uni.

Moving back home was the best thing I did. I had spoken to my tutor about what happened, and I could have taken it further, but I decided it was best just to let it all go and move back home. From then on, I was more relaxed. It was only at the end of the year when we all moved our stuff out, that we had a message telling us that we were ‘filthy’ and ‘we won’t be able to handle any level of responsibility in life’. They also mentioned us ‘living in our own filth which is the lowest of the low’ claiming we never cleaned the place. Jokes on them because me and my boyfriend were barely there, it was them living in their filth. When I was there, I cleaned the house all over multiple times, in fact it was them that were dirty. They sent pictures of some clean areas in the house, claiming they were dirty and said, ‘this should give you idiots an idea, you should be embarrassed’. Shame for them, I wasn’t, I hadn’t been living there. We spoke to our other flatmate (who we liked) and he said he had had similar experiences with the two girls as I had. He felt intimidated by them, and this caused him anxiety. He also told us how paranoid they were about if we were living in the house or not. They tried to claim we had smashed a glass (despite not living there) and that they were going to hide the shards in our food bowls. Lovely people. Anyway, they claimed we wouldn’t get our deposits back, but we did and that was the end of that. They have blocked me on everything and I’m glad to be rid of them.

Are you bored yet? sorry for the rambling, but this experience, stupidly, does still bother me. I have nightmares about them sometimes which sounds really stupid and overly sensitive. But I am sensitive, that’s who I am. And I struggle in social situations, and I don’t fit in, and people think I’m weird, but that’s okay. Because the friends I did make at uni, and at home, completely accept me. And I’m glad these experiences happened because otherwise, I might have ended up friends with these people, and who needs friends like that? It was unfortunate, and it wouldn’t happen to everyone. But the stigma is still out there. My flatmate had an attitude towards mental health that was damaging, not everyone can just get on with it, not everyone can cope with conflict and just get the arguments over and done with (which is what they wanted to do), not everyone can be social all the time, not everyone can hold it together. Everyone has to snap. There were a lot of mistakes I made, but I also learnt a lot, and I don’t think the whole thing was all my fault like they made me believe. Being autistic, you do latch onto people who you consider friends, you trust them more than yourself sometimes and its easy for someone to convince me I’m horrible, and weird at times. But this is what I’ve learnt from this experience: keep yourself surrounded with the right people, don’t feel guilty for who you are, and don’t apologise for struggling. I apologised when I made mistakes, and I explained why those mistakes were made, but if people around you can’t accept that, then you don’t need them as a friend. I was so desperate to fit in and have the stereotypical uni experience, that I threw away my own personality, and stopped thinking about my own mental health, I put on my mask and I tried to fit in and look how it ended up. So, for anyone out there struggling with friendships, if you have to act in a certain way to fit in, so much so that it affects your mental health, don’t bother. I’d rather have a handful of friends who accept me, than a million friends who don’t really know me. I know lots of us autistic people mask, and that’s okay, but at some point, the mask has to come off, you can’t keep it up, and the friends that stick by you are the ones you should keep.

Thank you to all my  remarkable friends (both at uni and at home) who supported me, thank you to my amazing boyfriend who stood by me through thick and thin, and thank you to my family who always supported, and fought for me, even when the odds were against us.

Sensory Seeking and Sensory Avoiding

7th August 2020

So, I have learnt about the difference between sensory seeking and sensory avoidance when it comes to being on the autistic spectrum. This is also formally known as hyposensitivity and hyper sensitivity. It has been recognised that many people on the autistic spectrum experience sensory processing disorders, leaving them hypo/hyper sensitive to some senses. Hypersensitivity is something I have explored in my previous blog ‘Sensory Overload’. Hypersensitivity is where a person is sensitive to senses. For example, I will avoid loud noises and bright lights because I am hypersensitive to them. Hyposensitivity is where a person has a low sensitivity to a sense, therefore they become sensory seeking. When a person is sensory seeking, they are seeking a certain sensation that will probably calm them.

There are different senses that a person may be hyposensitive or hypersensitive to. Depending on whether the person is hyper or hyposensitive to something, will determine whether they are sensory seeking or sensory avoiding .

SIGHT

  • Hyposensitivity– objects may appear dark, cannot see light the same as others- will display sensory seeking– likes playing with lights, or looking at moving lights
  • Hypersensitive- may sensitive to bright lights- display sensory avoiding behaviours by avoiding bright lights

SOUND

  • Hyposensitivity– may not hear certain sounds, doesn’t acknowledge some sounds- Sensory seeking behaviour will include- will enjoy crowded place, or seek out or make loud noises
  • Hypersensitivity- noise is magnified and sounds are distorted or muddled, can hear background noise, cannot cut out sounds- Sensory avoiding– behaviour will include- covering ears, avoid crowded places

SMELL

  • Hyposensitivity- lack sense of smell, fail to notice odours- Sensory seeking behaviour- seek out smells, or lick things to get a sense of what they are
  • Hypersensitivity– experience smells intensely- Sensory avoiding– avoid certain smells, for example avoiding people with certain perfumes

TASTE

  • Hyposensitivity– does not experience flavour or texture of food intensely- Sensory seeking– likes to eat spicy food, eats non-edible items
  • Hypersensitivity– flavours of food become too strong, food textures cause discomfort- Sensory avoiding-prefers plain food, dislikes certain food textures or tastes

TOUCH

  • Hyposensitivity– has a high pain threshold , doesn’t feel sensations of pressure- Sensory seeking- high pain threshold therefore may self-harm, seeks pressure by holding others tightly, fiddle with objects, enjoys heavy objects on them (weighted blanket), chews things
  • Hypersensitivity– dislikes hugging people, feels touch intensely- Sensory avoiding– avoid hugging people, avoid having clothing on hands or feet, avoid brushing/washing hair, dislikes certain food textures, intolerant of certain clothing textures

BALANCE/ VESTIBULAR

  • Hyposensitivity– not feeling motion- Sensory seeking– needing to rock or swing for sensory input
  • Hypersensitivity– feels motion intensely- Sensory avoiding – dislikes sports, experiences car sickness, dislikes things such as amusement park rides

BODY AWARENESS/ PROPRIOCEPTION

  • Hyposensitivity- unaware of bodily space in relation to others, lack of understanding of how different body parts move- Sensory seeking- stands to close to others, bump into people, rock back and forth
  • Hypersensitivity- difficulties with motor skills, highly aware of their bodily space- Sensory avoiding– avoid being close to others, will be more physically cautious

When a person is sensory seeking, they are likely under-sensitive to input (hyposensitivity), when a person is sensory avoiding, they will be hypersensitive to input. Now some people may be one or the other, but it is not uncommon for people to be both. For example, I am hypersensitive to light, sounds and to the feel of certain materials (touch). Yet I can also seek sensory input of pressure which also falls under the touch category. Therefore, it is not so clear cut. On the whole I am more hypersensitive than hyposensitive, but I will seek sensory input by fiddling with objects or seeking pressure and sometimes seeking vestibular movement (despite hating the sensation of amusement park rides). For example, I have loved swimming since I was younger, and after swimming in the sea yesterday I realised I enjoy the pressure, and gentle rocking of the sea, as it provides calming sensory input. For a lot of autistic people, water is a widely used tool for sensory input, and only after yesterday did I realise I display sensory seeking tendencies with water too. While researching online, I came across aqua therapy which explains how people with autism often love the deep pressure that water provides. Water provides hydrostatic pressure as it exerts 30x more deep pressure stimulation on the body than air. Not only does it provide pressure, it includes vestibular stimulation as swimming provides similar sensations to rocking. It is also said to improve proprioception. Therefore, I would definitely advise using water as sensory input if you or your child is sensory seeking. For me, being in the water yesterday made me realise that despite being more sensory avoiding, there are sensory seeking behaviours I do in order to calm myself. So even if you are more hypersensitive, there may be sensory input activities out there that will calm you.

Sources used:

https://www.understood.org/en/learning-thinking-differences/child-learning-disabilities/sensory-processing-issues/sensory-seeking-and-sensory-avoiding-what-you-need-to-know

https://www.autism.org.uk/about/behaviour/sensory-world.aspx

Autism Logos: A History Lesson

2nd August 2020

I have given my website logo an update after my research into the history of the puzzle piece. It’s fair to say I was shocked when I read through the articles. I have always liked the puzzle piece because to me it symbolised the unity of the autistic community and the idea of being able to fit it yet being unique because each puzzle piece is different. Some people still love the puzzle piece symbol, but out of respect and awareness of its previous history I have changed my logo to the new autism symbol: the rainbow infinity sign which represents the wide spectrum.

So why is the puzzle piece bad? Well it was first used by the National Autistic Society in 1963 by Gerald Gasson. When reading the blog In The Loop About Neurodiversity Cassandra Grosman states that Gasson ‘and the rest of the board believed that autistic people suffered from a “puzzling” condition, so they adopted a logo of a puzzle piece with a weeping child, displaying the notion that autism is a tragedy that children suffer from’.

So, this is problematic for obvious reasons. It enhances a negative view of autism that leaves children suffering, which is ridiculous. This was bad enough in itself until I found out about the organization Autism Speaks.

Autism Speaks use the blue puzzle piece logo, and well let’s just say they are a hate group, please don’t ever support them. If you don’t believe me just go on YouTube (I have included the link below) and watch the advert “I Am Autism”. Its disgusting. Cassandra Crosman in The blog In The Loop About Neurodiversity (https://intheloopaboutneurodiversity.wordpress.com/2019/03/20/the-ableist-history-of-the-puzzle-piece-symbol-for-autism/) confirms that ‘Autism Speaks has previously called autism a disease, and has said statements such as, “This disease has taken our children away. It’s time to get them back,” and have called autistic people “burdens” and “tragedies,” and has called autism itself an “epidemic.” In their “I am Autism” advertisement, Autism Speaks made statements such as that autism “robs children of their dreams,” and that autistic children “live behind a wall.” The puzzle piece is also blue, a colour chosen because males receive more formal diagnoses of females, which implies that autism only appears in males or that males are “more autistic” than females are.’ So, there you go, that’s why you shouldn’t support Autism Speaks. They also promote ABA therapies which most of the autistic community disagrees with. It is a type of therapy where children are praised for good behaviour and punished for bad behaviour. It is often held for many hours which is hotly disputed. In essence ABA therapy focusses on eliminating ‘difficult behaviour’ and helping autistic children to fit in. This is obviously not helpful and most autistic people I follow on social media also hold these views.

In response to this, many protests have been held within the community with banners reading “I am a person, not a puzzle”. Dehumanising autistic people has been a problem throughout history and these attitudes are still held today. We are not problems that need to be fixed, we don’t appreciate patronising views, or being told by people who don’t have autism what autism is. These organizations need to be listening to the voices of this community, instead of promoting awareness for us but doing it wrong. It’s feeding into the misunderstandings that already exists. Autism Speaks DOES NOT speak for me, nor does it speak for the rest of the community.

However, despite its history, some autistic people still identify with the puzzle piece, which is totally okay. The puzzle piece has been given some new meanings. Some people can’t accept it due to its history and that’s okay too. What are your thoughts on the puzzle piece?

Autistic Pride

1st August 2020

Since starting my blog, I have been welcomed with open arms into the online autistic community. I have had an overwhelming amount of support from parents of children on the spectrum, and from people on the spectrum themselves. I have been offered support, and also, I have been asked for advice from people who believe they are on the spectrum. My inbox has 17 messages already, and this is growing every day. This demonstrates to me how talking about your own experiences can really make an impact. Not only do I get to help others, but I also get to relate, and communicate with others who are just like me. Having this community has made me feel so accepted (minus a few people). The amount of support people are willing to offer is amazing and I couldn’t be prouder to be apart of such an accepting, warm community.

I also find this completely obliterates the stereotype of autistic people as cold and unempathetic. We do feel emotion, we do crave friendships and relationships. People on the spectrum struggle with cognitive empathy, so when we feel empathy we don’t know why, but we still feel it. For example, if someone close to me is upset, it is likely I will also be upset. I won’t always understand why they are upset but I still feel upset in response to them. This is because there are two types of empathy: ‘cognitive empathy’ and ‘emotional/affective empathy ‘. Verywell Mind distinguishes the difference:

Cognitive Empathy

  • Taking another person’s perspective
  • Imagining what it’s like in another person’s shoes
  • Understanding someone’s feelings

Emotional Empathy

  • Sharing an emotional experience
  • Feeling distress in response to someone’s pain
  • Experiencing a willingness to help someone

Someone on the autistic spectrum who would have been previously diagnosed with Aspergers (which isn’t actually diagnosed anymore, autism is just diagnosed as ‘autism’ instead of different types), is more likely to have emotional empathy but not cognitive empathy. There are others on the spectrum who will lack both. So, giving an umbrella statement that autistic people are not empathetic is completely untrue. I have found an immense amount of empathy and kindness within the autistic society and I am very grateful for this. So, I hope that I have diminished that stereotype.

If anyone on the autistic spectrum ever feels alone, I would definitely recommend talking with the autistic community it helps to discuss it with people who understand. This doesn’t mean to say you shouldn’t speak to neurotypicals, because by speaking to everyone (not just autistic people) it raises awareness and breaks down stereotypes. So, my overall advice is to talk, to anyone and everyone especially if you are struggling.