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Finding your community // Self Diagnosis

Recently, while applying to join an Autistic Discord Community Server (which I'm not going to name) I was asked to state my opinions on Self Diagnosis.

I created this blog page to be an open and honest place were autistic teens can find advice and solace. I would like to remind everyone who reads my blog that I am not the be all and end all when it comes to autistic discussion. I also do not accept bullying, bad mouthing or being rude to people based on identity and disability. This blog is my opinion and advice as Sprkle. I am only human and I am likely to make mistakes and say the wrong thing. I am also allowed to change my opinions.

Following that disclosure...

I think that finding community is incredibly important. Whether that is, as Chloe Hayden says 'finding your tribe', or being part of any club, community, online forum, or fanbase. Quoting Hight School Musical 'we're all in this together'. It is important to have people with which you share common interests and can talk about what you like. This doesn't mean that everyone has to have the same personality entirely or that you all have to agree on absolutely everything. What a boring world it would be if that was the case.

Anyway, the other week I was attempting to join a discord server that prided itself on being an Autistic Community. Interestingly, along with providing a brief introduction about yourself you also were asked to share your views on Self Diagnosis*.

*Collins Dictionary defines Self Diagnosis as 'the diagnosis of one's own malady or illness'

I'd like to weigh in my own discussion and opinion on this.

Personally, I think that self diagnosis can be dangerous. It can affect not only the person self diagnosing but also the people in the community.

Self diagnosing can not only lead to people having an incorrect outlook on ones own mental health, it can also cause unneeded stress and anxiety (please read this article from the John Hopkins Hospital for more information). I will also add a link to a few more articles about the dangers of self-diagnosis at the bottom of this post that I would encourage you to read.

I would also like to state, from a more personal anecdote, that self-diagnosis can sometimes (I emphasises that I am not saying all the time here-) lead to the mistreatment of others in the community who do have a diagnosis. Some (again not all) people who self-diagnose do so in order to gain attention. From what I have seen in my own life with someone doing this, they have played on harmful stereotypes and this has lead to myself- and other members of my school community- to not receive treatment or help as we should. However, I do understand that for many a diagnosis can be hard to come by, and in some circumstances dangerous to ask for/have. Thus, some people turn to self-diagnosis. In these circumstances I still do not think self-diagnosis is the best answer, however, there is no harm in researching, joining servers or asking for advice. I think that you do not need a diagnosis to know how you are feeling, while for many it validates, it is not required to validate how you are feeling or what you have experienced. Again, I urge you to look at the links to Kooth, Childline and the NHS in my blog if you need support and are in the UK. This has been a rather long and controversial post and I apologise to anyone who may no longer feel welcomed to my blog due to what I have said, and I do hope that you still stay. Please know that if you wish to ask questions you can do so on my blog page or if you would like to have a chat that option is still open to you.

-Sprkle Here are some more links about the dangers of Self-Diagnosis:

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Laios really is one of my favourite recent Autism-coded characters in media. While I loved the depiction of Autism in HeartBreak High on Netflix, I really adore Laios.

Whether this is my Smosh hyper fixation which has been raging for over 10 years now and my love and respect for Damien Hass in being so open about mental health and Autism...idk.

But having an Autistic-coded character voiced by a Autistic VA is so special to me!

Anywho, go watch Dungeon Meshi everyone!

-Sprkle

Y’know… I don’t think Laios is good at social cues… I don’t blame other characters if they think he’s secretly evil 😭

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Shout out to anyone struggling with burnout at the moment. Exams and school are hitting hard!

Here are some useful links I've found to help with burnout:

Reminder to self:

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Hiya! I am a LGBT, British, Autistic, Female Teenager. I have created this page to share, discuss and talk about my experiences in being Autistic as a teenager in the UK.

This blog is for anyone- with diagnosis or without, family, friends, or just people who are curious about Autism. 

While I don’t share too much private information on here, I am up to suggestions and questions on what to post. 

Please make sure if you are interacting/ referencing my blog page that you are being respectful at all times to anyone else here!

In my main blog page (link above) I have links to helpful mental health websites. I think its so important to remove the stigma surrounding 'mental health' and the automatic link many people make with the negatives. Having good mental health is just like having a good physical health!

Thanks, have a great day luvs!

-Sprkle

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It so wonderful to get some other advice here for folks who aren't diagnosed/ are unable to feel safe/accepted in getting a diagnosis.

I did not have a diagnosis while I was taking my GCSE's either and also found them a great deal of difficulty as a result. I relied heavily on LOOP earbuds and I am an avid believer in advocating for yourself if you need help.

I'm so glad you felt safe in sharing your own experiences! I wish you the best of luck in your exams and I am sure that- even if you do not do as well as you may hope- this self advocacy, determination and hard working nature that comes across from you will get you far!

-Sprkle

Support // School

Getting support at UK secondary schools is hard. I won't try and sugar coat that.

I received my Autism diagnosis- like many AFAB people- pretty late. My diagnosis came to towards the end of my time in the education system.

To those who are struggling with their mental health at the moment, please go and get support.

To those who are questioning if they should try and get an Autism Diagnosis I urge you to.

To those hesitant to get one, I ask: Why not?

What is the worst that could happen? You don't get a diagnosis? Well you can still get support elsewhere for low mood. You do get one? Well now you have access to a community of people who relate to so many aspects of your life and who have likely gone through the same struggles that you have and come out the other end with some great advice! Getting a diagnosis is something which I can not promote enough. If you think that you may have some neurodiversity- in anyway- I urge you to try and get a diagnosis.

Especially if you are in full time education still. You can get special considerations for your exams (whether that is extra time or something else), go and get tested.

-Sprkle

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Ah overstimulation- such fun! (not!)

Sometimes when I'm sat in school and the overstimulation hits I struggle really hard to concentrate. Sounds can become overwhelming. I find that tactile stims (such as having a small fidget toy) can really help distract from the noise...but there are plenty of other helpful things you can do to distract yourself and help to self-soothe.

Here's a really helpful link to some self-soothing ideas:

[I.D. an edited version of the "is this a pigeon" meme. A man with glasses, captioned "my overstimulated ass" points at a butterfly, captioned "someone making an annoying noise". At the bottom of the image, a dialogue caption reads "is this a crime deserving the death sentence?" end I.D.]

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Repost // Apologising

Second repost everyone! I wanted to share this post because it really does bring some interesting points up and I think its really helpful to read for those who are- like myself- prone to being a people pleaser and over-apologising.

I have struggled throughout my time in full-time-education with my attendance and despite achieving grades which many would envy I was still penalised and bullied by teachers about my poor attendance. I shouldn't have to apologise for my neurodiversity brain needing time to restart and rest after spending so much time and effort at school. I know school is challenging for those who are neurotypical, but some of my biggest struggles- including the sheer exhaustion from masking all day, to the overstimulation of the school campus and having to strain during every conversation to understand what is being said. It is exhausting.

In a related side tangent, how many of ya'll get told off for over-apologising?

If you're in the UK: here is a link that was really useful when dealing with my school and getting some extra help and kinder treatment surrounding my attendance and other things I was- prior to my diagnosis- penalised for.

original post that I reblogged:

Why is it that disabled people are made to feel like they should be apologize for their disabilities and accommodations? Like, it feels like I have to constantly apologize if I'm not projecting the best health at all times. But all of my apologizing (for that) is a sham. No, I'm not sorry that I get so burntout I need to regularly take days off. I'm not sorry I need you to shut up for a moment because sound is painful to me. I'm not sorry I forgot about that assignment because I dissociated through you assigning it. I'm not sorry I need to stim. I'm not sorry that I just ticced. I'm not sorry that I can't talk right now. I'm not sorry I can't stand around for a while without finding a chair. I'm not sorry I need to step outside for a moment. I'm not sorry I have to sleep in. I'm not sorry I can't go in today because I'm too anxious. And I'm only barely sorry I couldn't get whatever thing you needed done because of my executive function issues. Yet if I don't grovel enough for forgiveness for accommodating my disabilities, I know others won't be willing to in the future, and that's with an official autism and adhd diagnosis, and being medically recognized by my therapist with a dissociative disorder.

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Overstimulation // School

The other day I had a rough day at school. These rough days are why I genuinely despise when people romanticise disabilities- mental or physical. I would not wish trying to survive in a British Public school with Autism on a bad day to my worst enemy.

Lights burn and the cacophony of sounds which reverberate around the classroom and study centre make me want to Cassandra-Nova-Style reach into my own brain and smooth it over so it just stops feeling, hearing, seeing and being.

I struggle most days with sounds and and lights. I am pretty fortunate that over the last few years most of the lights in our school have been replaced with the more gentle yellow glow or halogens (while I have been told these are worse for electricity consumption) rather than the intense burning singe of bright white LED's that feel more suited to a place of torture than a welcoming school environment. That may seem intense to neurotypicals but I can't even try and put into words how my eyes feel after a full day- let alone week, or month- of sitting under the white intensity of LED lights. They are hellish*.

*on this hellish note I like to imagine that hell is not the burning fire depicted in many religious illustrations and descriptions but instead more like a horrific office- excuse me another marvel reference- like the TVA filled with burning LED lights.

Anyway, as for my biggest peeve- sounds - the horror! The constant chatter of people is an everyday struggle but having a teacher consistently yell every 15 minutes 'EXCUSE ME, CAN WE HAVE SOME QUIET PLEASE?' really does not help (though I'm sure they have the best intentions). I know its bad when my earplugs (or headphones with music on) can't even block out the dull drone of people chatting about who knows what.

As I'm sure many reading this who are autistic can really understand the struggle, I wish like in many of my other posts I could give you all some advice...however this time I am choosing to shout into the great abyss of the internet for the advice of others...

What do you do on days when overstimulation is hitting you like a truck?

I wonder what advice the internet will provide for me today.

All the best luvs,

-Sprkle

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Support // School

Getting support at UK secondary schools is hard. I won't try and sugar coat that.

I received my Autism diagnosis- like many AFAB people- pretty late. My diagnosis came to towards the end of my time in the education system.

To those who are struggling with their mental health at the moment, please go and get support.

To those who are questioning if they should try and get an Autism Diagnosis I urge you to.

To those hesitant to get one, I ask: Why not?

What is the worst that could happen? You don't get a diagnosis? Well you can still get support elsewhere for low mood. You do get one? Well now you have access to a community of people who relate to so many aspects of your life and who have likely gone through the same struggles that you have and come out the other end with some great advice! Getting a diagnosis is something which I can not promote enough. If you think that you may have some neurodiversity- in anyway- I urge you to try and get a diagnosis.

Especially if you are in full time education still. You can get special considerations for your exams (whether that is extra time or something else), go and get tested.

-Sprkle

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“Our identities make us who we are, and all aspects of our identities are important, including (maybe even specifically) our disabilities.” ― Chloé Hayden, Different, Not Less: A Neurodivergent's Guide to Embracing Your True Self and Finding Your Happily Ever After

I recently finished reading Different Not Less and had an incredibly emotional moment following finishing it. This book not only explained and allowed me to think about myself and my own experiences but also think about the traits of Autism that I see in my own Mother and Father.

For my parents, having my diagnosis has not only allowed them to have explanations for all my differences and quirks over the years but also for their own issues that they have faced in their lives.

My parents grew up in a time when an Autism diagnosis would have almost certainly left you in an asylum. This is horrible to realise how close that time was to now. However, they have seen me be able to grow and learn in a society that is not even fully accepting of me.

I have recently sent of my UCAS. This is something that neither of my parents has ever done or thought about doing. When they were younger neither of them did particularly well in the schooling system. While they are fine now and have done well for themselves, they were not supported at all during their younger years.

My mum and dad have their own horror stories about their educational careers that I am glad are a thing of the past. It is not my place to share their stories but I would like to say that while they had some of the most awful experiences during their time in education I am so thankful that I have had a truly different experience. Not only their support but the support and acceptance of my school and friend group- as Hayden puts it in her novel 'tribe'- has allowed me to reach a point in my education that not only has made myself proud but my parents.

I have been able to accept my diagnosis because I have a strong support group. Unfortunately I am aware that many people do not have a strong support group even in todays day and age. This makes my heart ache for those people.

If you are one of those people and are reading this post and want support please feel free to reach out to me and talk.

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This is a wonderful quote from Unmasking Autism <3

"Unmasking in public feels nearly impossible, because when we are around people, it's as if we have no thoughts or feelings of our own."

Unmasking Autism, Dr Devon Price

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Great Books on Autism

Different, not less

Strong Female Character

Unmasking Autism

The Autistic Brain

Let me know if you read any of these! I'd love to discuss them!