Have you ever come across the saying of “it always comes back too_____” blank. We all have our own blanks such as; “It always come back too my childhood” or “it always come back to food” or “it always comes back to when my hamster died”.
For me it’s Autism. No matter what is going on in my little world it always comes back to my Autism even when I try really hard to keep it separate it just interwinds itself even more. I’m going through some health things it’s something I’ve dealt with on and off since I was 2 unfortunately for a reason I wish I knew the the intensity of these health episodes and the quantity has increased massively in the last month or so. I feel like anyone dealing with similar events would struggle with them alone but with Autism in toe every bit of the situation is exacerbated.
Because of these events my routine has had to change, the way I work in a job that I’ve been doing for nearly two years now has had to change and that’s completely flipped my world upside down because of my brains inability to accept and process change in any other way than a danger. Despite knowing why the change has had to take place and knowing that hopefully it’s only temporarily it’s unsettled me to the point where I feel myself crawling out of my skin as I pinch myself hard to try and stop me clawing at my skin in complete frustration because my body is now in overdrive not only have I lost a sense of control but the routine that once held me tightly together is no longer and despite it being done for a very good reason my Autism senses it as an attack so it gets myself ready to battle the opposing team but do you know what? The opposing team that my Autism is so hell bent on defeating is myself…
As well as the routine change these health issues have made me very visible to my coworkers, something I don’t often like, I don’t like the attention nor do I know how to respond to it because of my Autism it makes me so uncomfortable to be the reason of their concern. A simple “we are so worried about you” makes my skin crawl, I can’t process it, I don’t know what to do with it, the fuss and the constant strings of “how are you feeling?” “Are you ok?” THE answer is I don’t know I DONT KNOW! maybe in a week or so I can answer but by then it be too late to answer such a question and sometimes I just don’t know how I’m feeling because of my autism I often go well forever with not knowing how I’m feeling I can usually guess but those guesses don’t always hold not when the emotions get so very complicated.
Like right now I don’t feel good I feel frustrated I think it’s like a pressure and it’s in the pit of my stomach and it’s a heavy ball of feeling I can’t pinpoint I JUST CANT. And I don’t know why but I do but I don’t and it got me thinking would I be in this amount of turmoil if I wasn’t Autistic like yes these health episodes would still be happening but would I be able to deal with them in a better way because I would have the tools already with me instead of running around trying to make my own tools with no blooming instructions.
Would I know how to respond to people who wants to help me?
I would I be able to say everything I meant instead of having to write it down? and it still not being enough
Would I have a name of this mixed up emotion I’m feeling?
Would I be able to advocate for myself more efficiently? be able to speak freely without something stealing my voice while it screams inside my head a silent scream
Would I be able to actually speak to a dr and explain myself properly so I didn’t have to wait for yrs nd yrs for treatment?
Would people stop assuming? That I’m either stressed or worrying? Before I could even get to that conclusion myself
Would ppl stop assuming im overwhelmed, would i be able to tell faster when im overwhelmed?
Would I be able to process these health episodes and the conversations the same days they happen instead of days after
Would I be able to self soothe instead of pacing up and down until I’m sobbing , my fists curled up in tight little fists.
Would I be able to say what I mean instead of meaning what I say.
Would I just be able to work without thinking I have something to prove without fearing that a health slip up could prove to ppl I’m unfit to work something that I often feel I have to fight against because I’m already Autistic.
I’m frustrated I’m frustrated I’m frustrated!!!!! but I’m I? I don’t know I don’t know, have u ever been unsure how ur feeling? Try that every single day but then having to make like u do like u know exactly how ur feeling all the time even throwing some names in there despite having no clue.
I’m losing the point of this post see I’m so just so don’t know mixed up I can even wrote properly. The unknown from these health things I’m going through triggers my autism, I build my world on the grounds of knowing everything I can about anything that’s happening in my own little world so I don’t crumble into a mess but this health thing don’t care about that it thrives on unpredictability but then my Autism drowns
Nd where does that leave me? It leaves me a mess a complicated bubbling ready to explode mess which then triggers the health episodes which triggers my autism and so on and so on and on the cycle continues the circle goes round and round and round. Especially as due to my autism I over think so it really does go round and round
So it really does all come back to….Autism. No matter what I’m doing, living, working, seizing….. it comes back to the A word and what a very complicated word that is….
The worse thing about my Autism is never being able to feel completely understood because I don’t even understand so how could I possibly make others understand?
When I was younger and frustrations got too much I would yell, scream, cry, hit punch, kick, spit, full on exorcist on the floor. I didn’t have the means to regulate the means being communication because you can have all the stress balls and other sensory tools you like but without communication regulating is impossible because without an outlet for those frustrations they just fester until they blow up, resolution is not always the goal you see some of these frustrations will never ever be resolved because of so many reasons however sometimes just getting them out into the open weather that’s to your family, friends or a blog on the internet it’s important to be able to allow them to be freed.
10yrs without a verbal voice you would think when I finally got it I would never shut up that it would be my sole way to communicate but in fact it’s probably my least preferred way to communicate my frustrations, you see I’m still learning to regulate so verbally they may come out as rudeness or even a crooked smile and a downplay of the events that curse my mind every hour of the day and night so I let my fingers do the talking, across a keyboard they type everything I want to say but just can’t. they talk through the injustice and frustrations I feel on a daily basis the confusion that greets me every time I try to fit into a world that just isn’t made for me, it types and types and types in hopes one day someone a special kind of someone a someone who wants to in force change will read it and start making a world that not only speaks about inclusivity but inforces it too in ways that are big but also most importantly in ways that are small so tiny in fact that you might not even notice because they would already be so ingrained to our lives that we wouldn’t need to spare a thought.
I hate talking about this topic mainly because people seem to just wave it away they put it down as the person being paranoid them using their disability card where it doesn’t belong but what they don’t know is how it feels being the other person. The person who has to admit that discrimination is taking place we got through many phases of this realisation if you call it that because discrimination is something we face every second of the day however let’s go back again how it feels to be that person. Having a disability I think a lot of people think it means you think everyone is discriminating against you when it’s actually us who are the issue, I didn’t know what else to tell you apart from that is not true at all like yes we are aware that there is room for discrimination because of our disability or the way look or skin colour or whatever is but that doesn’t mean we think it’s happening every second of the day in-fact we like to look on the good side a lot of the time we like to gaslight ourselves telling us that we have got it wrong but deep down we know we are just too aware.
I’ve been painfully aware my whole life some days I can predict things before they even happen it’s because I can pick up on patterns in peoples behaviours like no one else I usually use this skill as a way to help me see a routine in places, things, people so the day isn’t too overwhelming but it also means I can pick up on peoples Intentions a lot quicker than my peers I see the looks, I hear the whispers I feel them, I smell them I’m aware painfully aware you may add, I feel the judgements and the questions on my abilities, I see you thinking ur being clever I also see when other people finally notice the same and they try to cover it up thinking I’m still oblivious to the whole thing but in fact I’m already so far ahead of you I can’t even see you anymore. The one thing I’m not very good at is knowing what to do about it like of course the first thing being is report the behaviour but then I get stuck in my head about it, why should I be the one to report it why does it happen in the first place? Why in this day and age is this still something that is happening in the work place, at home, in the entire world? I then feel like reporting it woulndt do a thing because why would it? If a change was wanted then it would of already been Implemented yet here we are stuck in the same behaviours as yrs prior, so what can I do? Let it roll of my back, let the injustice of it all drown me, keep doing what I’m doing and show those people they can’t get me down? But they are? They have…. I’m sad for me but also sad for the other people like me who will have the same crap but I’m…stuck. I’m just stuck. What if I report the behaviour and what if they do that one thing which is worse than just ignoring it or telling me I’ve read it wrong…what if they tell me exactly why they exclude me what if they confirm what my head has told me all my life….that….that I’m unable, I’m just not good enough…
One thing I do know that I can do is to write about it, let people read it, some may think oh here we go again someone saying they are being discriminated against and they are not, some may share it, some may message me a heartfelt pm full of motivation and some will just sit with it…. Is there a wrong thing to do? I don’t know I guess either way it’s out there someone will have it someone will be aware of this problem that affects so many people mainly in the work place and I guess right now that’s all I could wish for…. I want people to be painfully aware just like I’am
Every
Single
Day…
When I was diagnosed with Autism at age11 I figured there would be a lot of things left unsaid back then it was more because of the physical aspect I had very little verbal language it was always deep within but there was a disconnect from my brain to my mouth especially when it came to emotions and feelings. As my verbal skills grew things were still being left unsaid as for so long I thought I didn’t have anything worthwhile to say the years of being mute had lead me to believe that I didn’t have anything important to say and no one would listen. Then I started a blog back in 2016 and realised many strangers hung on my every word. Now here I’am in 2023 and I realise that some things are still left unsaid but not so much because of my autism but because of typical life weather it’s the business of the days that take away my words, distance, lack of time and even death. What do you do when you have so much to say to a person who is no longer here? I’ve tried to sit with it but that it just grows and festers, telling the person is not an option either so I suppose writing it into the caverns of the inter webs is the next best thing hm?..
I’m not really sure what has created this strong need to write this it’s either that last month marked 4yrs of your passing or the fact that I’m in a place in my life that you helped shape.
I last saw you in July2018 on a visit to the school after leaving July2016, I was working at a doughnut shop and had decided that I was not going to university you couldn’t understand why I was “throwing 5 university offers away” you were disappointed and asking me why a question I could not answer as back then I didn’t know why I was making this decision all I knew is that I couldn’t go, throughout the yrs of teaching me my goal had been university and soon it had become your goal too you wanted to get me there even when my actions were less than forgiving back then so it’s understandable why after a year me deciding it wasn’t for me was hard for you to accept and understand, you had spent yrs trying to get me to believe that I had the talent to create a bright future for me while I self destructed right in front of your eyes. You were adamant for me not to let the people and situations around me hold me back something I had been happening a lot in my last year of school.
You thought I was going back down the self destruct route you didn’t say it but I could tell, I always could tell, I can see now that anger and disappointment was you not wanting me to miss opportunities as you of all people knew how short life could be. But back then we were both so stubborn which lead to disagreements, after our tense encounter you said I should visit more, I didn’t. I was angry and annoyed that you couldn’t of just accepted I didn’t want to go to university I was angry that you argued it with me why on Earth would I of wanted to come back to more of that?
So I didn’t well not until Feb2019 I went back to do a presentation to 6thform about life after school, you weren’t there you were sick. I was still working at the doughnut shop but I had accepted that in itself was still an achievement something you had told me in 2018 that despite the disagreement to do with uni the fact I had a job was still something to be proud of the only difference is I had more of a clear reason to why I had made the decision’s I had made I was a little less lost and wished you could of seen it for urself, i wished I could of shown you that I was focusing on my Facebook blog something you had inspired me to start in 2016 that little blog had grown in thousands I guess that’s when the journey of unsaid things started, I couldn’t tell you I just had to hope you somehow knew.
In March2019 I visited the school again and again you weren’t there well not physically but in spirit you were everywhere, in pictures, in memories and in the words that were said by students past and old and staff around. It was your memoir service, I said my piece but it could of never been enough, yrs of fight, exhaustion and cancer treatments you could finally rest; you left a huge impression on those you you met and well you know all that sappy stuff. Life carried on I left my job at the doughnut shop in 2021 I then worked in a nursery as a level2 apprentice for as long as you had known me I had wanted to work in childcare to the point you had made sure I was working in some sort of educational setting in my work experience sessions.
Life well life got hard as it often did the roads that were once clear were now full of obstacles and hidden traps the twists and turns got more frequent and I had lost my footing a few times, I got up each and every-time but I was getting tired and was struggling to find the want to get up again, I needed to find something that made me want to get up again so in July 2022 I left the apprenticeship. I spent the summer flopping about going with the flo for once in my entire life just seeing wherever each day took me.
In October2022 I landed a role within a teaching agency they found me a job within a special needs school something you had wanted for me but only because I had wanted it for myself first, you saw the fact that I had been a student in a special needs school as something that would of been so valuable to so many people you saw my biggest weakest as my biggest strength, I put in all of the lessons you had taught me in my own teaching silently trying to be just like you before realising you would of hated that you would of wanted me to aspire me to be better than you were which is still a work in progress. After a few months I realised I wanted to do this long term something I had always wanted but something I was too scared to even try and do like I had a good thing here why challenge it? “What’s life without challenge” I could hear you whisper. So I applied for a permeant job at the school and got it which leads me to now. April 2023
I have hard days, I have okay days and I have really good days. I have days where suddenly mostly everything you did makes sense I see so much of my younger self in the students I teach also a lot of differences, I’m more appreciative in a way I don’t think I was before in a way you can only be when you have stepped in such similar shoes, I also see the things that I was angry at for you for yrs I forgive you and myself I vow to be better because that’s what you would of wanted, I wasn’t perfect but neither were you and that’s what makes humans so beautifully complex. I understand the exhaustion and the emotional rollercoaster you must of been on teaching me and others, I see the joy you must of felt when my students succeed and I feel the pain when they struggle. I constantly want to better myself for them, I’m unapologetically myself which I know you always strived for me to be, I use my diagnosis to get ahead, I sit in the busy staff room and I think what you would of said if you were still here? Would you of accepted that me not going to uni was the right step or would you of still been stubborn? Would you of laughed at me while I told you about my headache of my days payback for being the cause of your headaches? Would you of persuaded me to come teach with ya? Or would you of strived for more? Would we of joked that I was coming for your job? Or would things still be left unsaid? Would I of even told you or just assumed that you would find out somehow you see before you passed I never liked reaching out or taking a chance on things but since you passed I’ve realised that sometimes you have a choice between reaching out or missing that opportunity forever.
Would you of been surprised? Would you of just smiled knowingly as you always had faith in me that I could reach this moment. Would you be pushing me for higher? “Right peri next is Hels then teacher training” or would you let me decide on my right path. I wish I could tell you, I wish you could see me see that because of you I’m someone but most importantly I’m someone to 13 teenagers whom I’m hoping will soon realise they too are and can be “someone” you were always the first person I wanted to tell when I landed this role there had been other experiences before this I had wanted to tell you but this was a big one it often feels wrong to live it out without telling you, it’s unfair but we can chuck fair out the window, you told me in 2017 that a personal family event I was dealing with would be the hardest thing I would have to go through but honestly I think exploring this and being happy but not being able to tell you about it is the hardest thing I’ve had to go through, it feels wrong. But I can’t let it feel wrong because I’ve worked too hard to throw it away over the fact I can’t tell you so like a lot of things I’m working on it I’m working on myself too I’ve to realise that sometimes I’m the problem and it’s not all on the hand I’ve been dealt so now I’m in a good place professionally I’m now healing personally so I can be unstoppable. I just have to have faith that somehow you know, somehow you are seeing this. That you are and would of been so proud and that I tell you everything by taking you everywhere I go by using your lessons in how I teach others
I strive to be successful using my talent for good, I realise my talent and I own it. I smile as I showed the kids everything I’ve achieved in forms of articles and written achievements despite challenges that they too some share, I hear you in my ear “welldone kid now KEEP GOING”
So I do. I keep going for you. Always for you. But also for me.
Now I suppose this is where I sign my name like I would after every email I used to send ya. I would often sign it off as speak later others may see that as a odd thing to put now given the circumstances but it feels right because my mind speaks to you everyday. Maybe you can hear me and that’s why this letter has been playing in my head so much recently. Or maybe someone else will see it others who wants to see you, maybe your amazing daughters who I know will grow to be a force to be reckon with, I hope when they are older they see this and they see you and what you continue to inspire even without your physical form so they can have something that fills in the gaps of “things unsaid”
anyway…
Until next time. Speak soon
Peri.
I like to engage into group conversations like anyone I hate being excluded but gosh I find it so difficult. When everyone is speaking I can not listen to all at once and I can not tune out and just focus on one. I hear everything!!! I hear the pet birds chirping, I hear the kids playing upstairs, so here I’am trying my best to engage in the on going conversations because man I SO WANT TOO!!! But then someone near me interrupts and I can no longer hear anything else but that person so without thinking I harshly snap “please shhh!” All eyes are suddenly on me…harsh scows chucked in my direction and comments like “Don’t give him attitude” “why are you so rude” “don’t start peri” I’m not starting nor am I giving attitude I just want to LISTEN I want to join in I want to feel INCLUDED I want to CONNECT with you why must you knock me back? Don’t you see I’m TRYING. I try so hard to do things you take for granted I try so hard to be a part of YOUR world despite being knocked back time after time don’t you know how much that hurts but I keep trying because I just want to JOIN IN do you know how sacred that is!!! That despite the constant misunderstandings I still want to join and listen to everything being said, I want to debate about topics, I want to laugh I want to make you laugh I want to feel a part of something so all I’m asking is please be patience with me please slow down, please don’t feel like I’m giving you attitude or mouth when I get overloaded and suddenly snap and please let me explain this matter because when you just roll my your eyes at me it makes me feel maybe I should of never learned to speak in the first place…I JUST WANT TO LISTEN TO YOU please see that as a privileged and not a burden and please never see me as a burden either…..
I often get asked this question a lot… “Peri do you still have meltdowns” and the simple answer is “Yes” however they have drastically changed throughout the years.
In the Autism community when we think of meltdowns we think of the person chucking themselves onto the floor, clawing at their face and screaming for hours on end. These are the meltdowns I used to have, I used to scream and cry, lash out at loved ones while chucking myself into walls and anything else around me.
Nowadays my meltdowns are often silent and for me they are more painful than my “typical meltdowns” like typical meltdowns the silent meltdowns can be triggered by anything from change, sensory overload, misunderstandings, arguments, illness, pain and so on. Imagine letting out a blood curdling scream yet it’s silent? Your whole body is screaming but yet it’s all internal all you can do is sit there and scratch your face, hit your chest while everything falls down within. If the meltdown was triggered by a argument you would often find me repeating segments from the argument that was said to me and I will be repeating this over and over again like “your a lia your a lia your a lia” even repeating thoughts I never got to express in the argument like; you said that I remember I remember” Then the silent tears will start, I’m trying to regain my breathing but my mind grabs hold of me and brings me back to the meltdown so I lash out at myself willing myself to just move on. I scream again but again it’s silent I hug and squeeze my chest willing for it to stop willing for someone to notice me and pull me out of this never ending torture cycle. I whisper comforting words to myself pretending I’m someone else yet knowing if anyone else was to say these things to me I would pounce on them as in this state I just can’t accept love. My head throbs and my chest heaves I feel like I’m going to pass out I feel trapped I can’t escape so I scream again whacking my head against the wall in the hopes to stop this internal pain …..yet no one heard because in reality I’m just sat there looking at my phone with my hands pinching into my skin. I’m drowning and no one can see all I can do is hold my breathe and hope the meltdown subsideds soon.
Autism can be lonely and isolating especially for those who experiences these silent meltdowns..just because it’s silent does not mean it never happened. It happened and it bloody hurt…
Autism and empathy
I have Autism and no I’m NOT a robot…
I’am not a robot, I have blood coursing through my veins just like you, I feel happy, angry, sad, scared just like you, I feel pain just like you and believe it or not I feel other people’s emotions too just like YOU….
“But Peri people with autism don’t have empathy I know this is true because I have read it in a book”!!
“Wait you read it in a book”?
“Umm well many books so it must be true”!!!!
Urgh I swear I have had that conversation a billion of times the whole myth of Autism people having no empathy has been going on for ages and it’s one that is actually pretty hurtful because when you say we have no empathy your actually calling us inhuman and funny enough that really hurts (another reason why I can clarify that we are not robots!)
We struggle with empathy don’t get me wrong but just because we struggle with it does not mean we don’t have it at all, the main trouble is how we express it and often feeling too much. I remember when I was nonverbal one of the main catalysts of me not talking was that I felt too much meaning I had no idea where to even start, I didn’t know what to say first. My empathy also caused meltdowns, going into a crowded room would always end in a meltdown not just because of the physical stimulation but a room full of people means a room full of different emotions and feelings, emotions and feelings I was going to all be feeling all at once….AAAAARRREGHHHAAA it’s too much!! Mums angry because the washing isn’t done, dads sad because his car is broken, the baby is scared cos the dog barked, my sister is happy cos she got good grades whatever the feelings were for and why I will instantly feel them all at once, I just couldn’t cope so I would meltdown or react negativity which would cause trouble so I often try and distance myself away from other people’s feelings if I don’t react then I can’t be told off for my reaction….right?….
But now I get told off because my lack of interest must show I don’t care which must mean so don’t have empathy….urgh your so wrong when will you realise that the problem is not that I don’t feel anything at all but that I feel too much so I get overwhelmed which results in me not always reacting appropriately or reacting in a way that you approve …🙄
I have done some nice things in my lifetime like I organised and took part in a 15mile charity walk for my teacher who has cancer, I also did a PowerPoint for this teacher when he had to go for an operation etc I did those things out of choice I did those things because I felt bad because I felt what he was feeling because I wanted nothing more to make him feel a little better…
“So you see I wouldn’t of done that if I didn’t have empathy would I?” N
“No peri you did that out of respect for him not empathy” da hell?!? Are you really assuming MY actions and MY feelings?!?!? I don’t know if you understand but the word My means they are MINE meaning no one can undermine them, assume them or explain them apart from me! And this Person’s argument was that I didn’t show them empathy at a certain time they assume I don’t have any empathy at all….NO!
I’m Just like YOU meaning I don’t “show” empathy all the time like maybe you had upset me that day or I was having a bad day so was unable to separate my feelings and yours etc there are many reasons why I acted the way I did but not having empathy is not one of them. I’m sure not everyone shows or acts on their empathy 24/7 so why I’m I made too in the fear of being labeled a non empathetic robot? Why do I have different rules to all of you?
Just because I didn’t show it does not mean I didn’t feel every ounce of pain you were going through maybe that was the problem maybe I was too overwhelmed so reacted negatively or distance or I was just trying to process everything because unlike you I process everything differently and much slower.
I often don’t always show my caring ways in the old traditional way like I won’t give a crying person a hug and I won’t sit there giving you a mushy pep talk because I’am unable to connect to you on that level but I will connect with you in other ways, I will sit with u in silence letting u know I will never leave u, other times I will leave u too it but then come back with a gift like a drawing for you or I will crack jokes and try to get you to laugh and smile so beautifully.
Then other times I won’t connect I won’t make u feel better because your pain is too great for me to Handel, I’m feeling every drop of pain you have and I have no idea how to make it better so I blame myself…I feel like a failure that turns into self hatred which turns into depression and anxiety which can turn into outbursts of snide comments but those are not cos I have a lack of empathy those are because my empathy is too strong which means I get too much information all coming in at one time so I can’t cope.
So I know it’s hard to believe like I’m going against all the “facts” you have read in those billion of books of yours but I’m not a robot, Autism people are not robots and you calling us that actually really hurts because you are really questioning are ability and subjecting us to inhumans.
Autism can be misleading we do things which may make you think we have no empathy but really you got to dig deeper, you have to look in between the lines, you have to have belief in us that we are just like YOU but a little different we want to be loved but we also want to love and we take joy in making our peers happy and feel better. 😊
I was that kid who ruined celebrations such as Birthdays, Christmas, New Years and any other celebration. Of course this was not intentional in reality I didn’t and I still don’t want to ruin anything but I have a hard time in keeping my emotions in check on celebration days.
Even as a 20year old women I still find that I ruin these special days which I hate as I do want to be able to join in all the fun and the boisterous conversations but I can’t. Otherpeople’s birthdays are the hardest as there is this pressure to make it an amazing day for the person and of course us with autism takes that very literal so we think even if we frown it will ruin their day.
So we keep everything pented up even though we are frustrated and our anxiety is hitting the roof because everything is different. Decorations are up… lots more people coming round….noise of laughter and ripping paper, routine is chucked out of the window and…and we just can’t cope.
So some of us scream, some of us cry, some of us get rude and snarky because we are unable to catch up and understand a conversation but we so want to be included so we try but the words all come out wrong so we get labelled as rude and inconsiderate.
There may be someone who just rubs us the wrong way but we are made to spend the whole day with them to celebrate but we can’t filter out their unkind words as well as everyone else and with everything else you can hear, feel, see, smell it’s too much so you blow up. The next thing we know we have said made a scene, everyone is tutting at you, your Granma has stormed out, a choirs of sarcastic “welldones” are heard and you are left feeling ashamed.
It’s sad that we are often made to feel ashamed over behaviours which we can’t help, we try so hard everyday even harder one days like these but they always prove to be too difficult. We don’t want to ruin anything we just want to enjoy the day with you but we can’t so to save you from disappointment and distress due to our behaviour we hide away.
We give you our gift and cards then we go and sit somewhere out the way and watch from afar. We are not ignoring you because we don’t care for you it’s actually because we care too much so want you to have the best day and if that means without us then so be it.
So before anyone says to us “that we have ruined your day” just know that’s the last thing we want, we are truly trying so hard to keep everything together.
Thank you 💙
Dear Parents, Caregivers, Doctors and Educators.
I’am Autistic but before that before anything else I’am a human being. I need food, water, shelter and love like anyone else to survive just because I’m autistic those things never change it just means I may also need extra things being done or those things being done differently.
Please don’t force us to have friends. I know you probably think your doing what’s best for us so making us play with those kids in the playground will solve all our problems but I’m sorry it won’t. It will just make us more uncomfortable so we will retreat back into our own world. Ease us in gently, listen to us ask us what we want even if we can’t verbally tell you we will tell you in other ways you just need to be patient. We don’t want to be forced to play with others when we are not ready because it shows us we are indeed outcasts and again we are failing you.
Please don’t ever say we can’t because we can and will! To us the sky is limitless, you may have your doctor degrees and teaching degrees but really you know nothing about us because you can’t because we are Jacks in the boxes but we don’t perform for anyone. Help us reach our full potential instead of putting restrictions on things YOU “think” we can’t do.
Please don’t pity us because then we will think we are broken and something that needs to be fixed, honestly we often think you are the ones who needs pitying. You go at such a fast pace that you miss so many wonderful things around you.
Please don’t force us to fit in your square peg hols, we are circles so no matter how much you push us we will not fit! But we will get bruised, bent and broken….why do you want to break us?
Please don’t yell at us for things we can’t help, I know we can be can be frustrating. Chucking the food you have slaved over for hours down the toilet. The texture is bad but so is the smell I gag just looking at it so I needed to dispose of it quickly. switching all the lights in the house off, they were hurting my eyes and head why is the world so bright? endless hours of screaming because it’s raining but today is Sunday and every Sunday we go to the park but now we can’t and my routine is messed! Lashing out at anyone who tries to hug us, making high pitch sounds at the supermarket then eloping because Someone else has just made a loud noise and that is NOT OKAY!
Please don’t say we are not trying because we are trying as hard as we can and we try every hour of every minute of every second of every single dam day! We try because we love you because we hurt when we know we have caused you pain and frustration. We can’t express to you what we are going through but our reality takes everything in us to make it through without a fight. Every food we put in our mouth we are trying not to puke it back up, every trip to the shops we are trying not to meltdown, every noise or sound we form we are desperately trying to form a word so we can speak to you, every kiss and hug we give we are trying not to squirm because physical contact burns us,every time we look at you we are trying so hard to give you the best eye contact without melting down because the puzzle inside overwhelms us. Even when you think we are not trying like when we are already in a meltdown we are, we are trying to stop and regulate our bodies and we try so dam hard so please don’t judge us just love us.
Please don’t leave our siblings out because you are focused on our needs. They are too fighting a silent battle so they need all the love and backup they can get. They are superheroes often sacrificing themselves for there quirky sidekicks so please don’t sacrifice them too. Half your attention and if you can’t do that let the siblings know you and we love them and are thankful for them everyday.
Please don’t force us to look at you, it hurts so much. We are listening to you and respect you but we don’t have to look at you for you to know this. We wouldn’t make you run over hot Cole so please don’t make us look into your eyes.
Please don’t force us to speak, we know how desperately you want to hear our voice. It’s in every parent book and is often referred to as the most magical milestone we will ever go through. Do you know how much pressure that is on us to fulfil such an important milestone? We know we should be doing it with ease, maybe we had already spoken but our voice was taken away as fast as we got it. It’s frustrating we so want to make you happy and just speak but putting everything on us speaking is not healthy because for some of us we won’t ever speak and yet again we will feel like we have failed you for something we really can’t help.
Please help us connect to you in other ways. Speaking is a way for us to connect with each other but it’s only one way, there are millions of different ways you can teach us to connect. Cards, signs, talking devices, writing, drawing, dance. These are just a few so please think a little outside the box and help us connect.
Please welcome and join our world instead of trying to push us into yours. When you join our world by taking part in our behaviours or sitting silently with us while we are on our tablet or lining up our many objects it shows us you are accepting us and our world with welcome arms. This will make us more willing to connect with you as well.
Please keep our routine in check as much as possible and if you can’t please warn us. Our routine is the only thing keeping us together so when it is disturbed our whole world is tipped upside down. We are not being spoilt or being stubborn we are just trying very hard to keep it together so keeping everything in order is key. Imagine you spent months putting milions of pieces of paperwork in organised files but then it is messed up meaning you have to start all over again. Knowing this process will take you months and take you away from learning other important skills to survive on this alien planet.
Please be patience we can take a lot of time to achieve simple tasks but we promise if you wait we will show you amazing things. Listen more because we sing beautiful silent songs just for you.
Don’t cry for us but cry with us, we are not something that should be cried over, we are not broken, we are not dying and we do not need to be fixed. We understand how scary this whole thing must be for you, parenting must be terrifying; one minute you are going out drinking and partying then the next you look down and you see this kid on your knee who is depending on you to survive and when you add Autism into the mix that kid will grow into an adult and may still be depending on you. It’s scary for us as well having to put all this trust in a person you truly can’t understand or connect to no matter how much you try so we have just got to trust that you will love and take care of us. When things go wrong we too want to cry so please cry with us let us know it’s okay to cry and that you are feeling this pain too, just don’t cry for us.
We know once you probably dreamt of flying but now your having nightmares about dying. Just don’t, we don’t know what will happen in the future but we will be okay because of everything you have and continue to teach us. You can still fly but now you don’t have to fly on your own.
Laugh, smile and love us! That’s all we want like anyone else we just want to feel and be loved! We may not show or accept love in the traditional ways but that does not mean we can’t feel it or show it. Don’t force us to hug you but embrace our other ways we have to show you we love you. You are our maps but we are your compass so please hold our hands and follow us into the doors of life, please don’t make us go on our own. We need you, we want you, we LOVE YOU.
“Maybe one day, I won’t be this way, Until then we’ll get by” ♥️
Love from
Your Autistic children, teenagers and adults.
I think the most asked question which autistic kids/adults and their parents get is ”why do you/they do that?” Mostly because most people think whatever we are doing is an inconvenience to them or sometimes they are just plain curious. What we do is no concern of the public but I know many families who often wonder why their kids are doing these ”bizarre things” So I’m willing to share my insight on the things I do and why I do them in hopes it can help families with their loved ones but also bring general awareness to you all not to judge if you see a child/adult doing something well ”strange”
”Why do I always look at my hands and wiggly fingers?” Have you ever looked at your hands?? they are the most interesting things in the world, they can do so many different things and move in so many different ways. All my fingers in perfect order moving in a rhythmic order its calming to me like the sight of a quiet ocean gently coming in and out to shore. Looking at people’s eyes are like looking into caves of hell and fire lots and lots of fire god how it burns but my hands they are not fire they are birds which are dancing to silent songs, they are my calm they are my muse.
”Why do I often make a sounds or hum when I’m happy/sad/angry”? Well, why do you smile when you’re happy or cry when you’re sad?” It’s just something that happens my sounds are part of my voice is how I communicate but it’s also a reflex just like smiling when you’re happy or yawning when you’re tired. I also hear a sound on the tv or a sound while out and about. If I like the sound it will often become ”my sound” which means I will echo it over and over again exactly the way it sounded originally. At the moment ”My sound” is a sound which sounds like an old squeaky door opening in a horror film.
”Why do you only eat a certain food?” Because I like everything the same including my foods, a different food can throw me right off. It scares me because it wasn’t what I expected and now it’s ruined my whole day just because of one different food! It’s crazy but its true I can’t help it, what if the texture is weirder from the others? what happens if it’s too crunchy or too soft? too sticky> too gooey? or the taste is all wrong, too spicy? too plain? Having all the same foods creates less anxiety and means I don’t have to starve myself.
”Why do you meltdown if your routine is changed?” Think of it this way if you had spent ages and ages developing a careful plan of this new universe which you have crashed landed on with no instructions so you had to make your own but now someone has changed something which makes your very careful thought out plan fall to bits. It’s frustrating and really really scary! Without those plans I have no idea what to expect or whats going on, I depend on those plans to live and without them I just fall apart. I scream, shout, cry lash out because I have no idea what to do or how to cope now I’m alone and have to waste my time that I need to use to get to know my peers around to now developing new plans which I’m sure will get ruined again and again but what choice do I have?!?! why cant things be the same?!?!?
”Why do you move around so much?” My body is fueled by a never ending motor, imagine a hyperactive squirrel which had accidentally taken a sip of an energy drink well that’s what my motor is. This world is so big so noisy so many things to see so bright! I have to keep up I have to always keep moving always move my body as that motor is having to work so hard to keep up with the world around me and if it stops even for a moment it might stop for good…. Jumping, flapping my hands, rocking, hopping, spinning, running, pacing my body was meant to move it needs to move.
”Why do I have to keep stopping writing just to engage in a stimming session?” Why do you have to stop and sneeze? It’s just an impulse I have, it’s something I have to do plus it feels really really good and regulates my body so I can concentrate and write a beautiful piece just for you. Just keep stimming, just keep stimming.
”Why do I line everything up?” ORDER!! this world needs order it’s so chaotic, so crazy there is no structure here and all my instructions to this world are all in this weird language that for the life of me I can’t understand so I have to create my own order. Lines are great don’t you think? who does not love lines?!?!? they keep everything in its place and everything has its place, the world is less noisy, bright, crowded, scary, overwhelming when everything is in a line. Straight and perfect unlike this world which is curvy and messy.
”Why do I only like even numbers?” Odd numbers are the numbers of the devil they just don’t feel right! every tv has to be turned up not too loud but on an even number, I have to have an even number of pieces of food on my plate, even numbers make me feel happy and calm where odd numbers make me feel anxious and restless
”Why do I chew everything” It didn’t taste nice…that shopping receipt I chewed, nor did those lego bricks or that computer cable or those rubber bands, they all tasted awful and made my jaw ache but I have this need to chew like you have the need to breathe. I don’t even realize I’m chewing most of the time until someone mentions it to me.Our brains all have a special part which controls all of our sensory needs well you see mine is totally busted its all wired wrong meaning I need to chew all the time I know how unattractive and silly it makes me look but I can’t help it. This does not mean I’m a dog or an infant it does not mean you can challenge my academic abilities it just means my blue wire is connected to a yellow wire instead of another blue wire.
”Why do I have obsessions?” I become obsessed with things normally tv shows which is kinder awesome as you may like the same tv show as I do but believe me when I say you will never like them as much as I do, when I like something I will learn everything I can about it, if its a tv show I will watch it over and over without getting bored with it because if you love something so much then you will never get bored of it right? I have so many friends say they love something but then become bored with it after a while…it makes no sense? This world can get really lonely you know like everyone seems to know what they’re doing, they seem to have special groups where they fit into and special people they connect too but I don’t…. So my interests become my special places and my special friends, when I’m watching a favorite tv show or doing a favorite hobby I feel like I finally belong, I finally feel secure and safe in a world which is so dark and scary
”Why do I script?” As a way to connect, because of its fun, because I feel safe when I do this, I feel like you even if the way I’m talking is slightly different. Sometimes what I hear on tv is really funny so I just have to echo it why wouldn’t I? like I said when I like something I like something an awful lot even the words and sounds they make.
”Why do I crave pressure and weight?” I feel like a floating balloon, I feel like I’m just floating I don’t feel like a real person I need to feel like a person I need to feel like I’m existing. So at times, I need a big tight hug or to be jumped on while I lay on the floor or to be squashed into a tight hole. It’s why you may find me tucked between the sofa or a gap of the fridge or why I have a hundred layers of covers on me even though its summer time. My blue wire is connected to the yellow wire meaning I don’t get that natural body awareness that we need to make us feel like a floating balloon so I try to make my own blue wire for it to connect to.
”Why do I flinch with touch?” Your touch hurts… It’s like you have just poured a thousand of ants all over my body and now pouring acid onto my open wounds….Believe me, I’m not being oversensitive so please don’t think I’m and force me to hug you, do you really think I’m happy that my tangled wires prevent me from giving and accepting love in the most natural ways created? Do you think I really enjoy not being able to give my family a hug when they are hurting? Do you think I like having to explain to them how I can be touched by some people but others like them it still hurts? Of course, I don’t its hell but please know it’s nothing to do with any of you. It’s just my tangled wires I can’t make sense of someone touching me
”Why do I hit my head?” Sometimes I get too much information coming in all at once and the mental pain that I endure because of this is so intense that the only thing that can help is causing myself physical pain. So I hit my head as hard as I can to try and get it to stop to try and get everything to pause just for a moment. I just wish I could get my brain to catch up quick enough, it hurts so bad. I dont do this for attention I do this because I’m hurting so badly that I coulndt even begin to explain it to me so please don’t judge just help me keep myself safe
”Why do I cover my ears?” Loud sounds are always louder for me, I hear them so much more than you do but I also see them and I also feel and taste them. All my senses get so overwhelmed that I just can’t cope. Loud sounds taste so bitter like nails covered with blood and pure lemon juice. Lound sounds looks like explosions of fire,knifs,bombs, and death. Loud sounds feel like stinging nettles, hot burning cole, and hedgehogs. Loud sounds sound like chalk on a chalkboard, bombs going off, cars crashing into explosions, fireworks, lions roaring the kind of noise which leaves a ringing in your ears, the kind of ringing which never goes away, high pitched ringing which makes me wish I was dead because I would rather be dead than be pained by that awful ringing. I hear the ringing, and smell the awful smells and feel the burning cold for much longer as well even when the original noise which caused this has gone I’m still hearing it, it takes longer for me to come down from it.
”Why do you smile and laugh to yourself?” Because The world is beautiful yes it’s very scary and loud but it’s also beautiful and because I have autism I can see some of the worlds hidden beauties which are often hidden from the rest of you. I smile because I’m so glad to be alive because I get to see everything which others miss. I get to see the way the sun shines on the water, I get to hear the sweet sound which water makes as it falls onto the ground, I get to see the birds arguing with each other like old married couples. I get to feel sand running through my fingers and in between my toes, I get to see the crinkles appear in my sister’s eyes when she laughs, I get to feel my families love in other ways than affection. Little things amuse me not because I’m not bright but because I know those little things are what makes the world go round, I notice all the little things because unlike everyone else’s fast pace lifestyle I walk around in this world noticing everything from the cracks on the floor to the sun in the sky. I’m happy I can see the small things because those are the most beautiful things in the world, the precious things because so many often miss them. I count all the leaves as they fall from the trees smiling as I do it because no one can steal this moment from me because no one can truly understand how much joy a simple activity can bring me, every Autumn the tree’s fall on off the trees but then every spring the trees grow new ones back how isn’t that amazing?!?!?! We are seeing real life dying and then living right in front of our eyes that’s enough to make me smile and laugh out of pure joy. I stand there for hours trying to make sense of it all as I see the beauty out of something so ”small”.
There are so many other things I do but I will be all day if I was to name and explain them all so I have done my best to explain a few. There is always a reason to why we may do something even if it’s as simple as ”we do it because we like it” The things we do are as important as the things you do, they may look weird and they may be different but they are what make us who we are and who we are is magical if you want to know more just ask please don’t stare and before you judge us ask yourself are we hurting you or anyone else? if not then let us do our ”thing”.
I’am autistic but before that I’am a girl, a women, a lady, a female however you want to address that title.
I know I’m not into all the typical girl stuff like make up, dresses, highheels, flaunting my self at guys. But you see I still have massive insecurities about the way I look and truly I just want to be beautiful…
I want someone to look at me and say I’m beautiful and really mean it, I want my eyebrows to just not be my eyebrows…every joke I hear about them makes me want to puke because it hurts so bad even harmless jokes I think because I can’t speak about my inscurties they think I don’t have any but in reality I have loads just like you…maybe even more because my autism can be a massive insecurity….
I want to be beautiful but wait what is beautiful? Like what is the definition of it? I know I’m not beautiful but my sisters are but I can’t really tell you what beautiful is just that I’m not it.
My biggest fear is to become fat, I know plenty of people who are overweight and beautiful but you see I’m not beautiful so being overweight would make it worse. I always hold a pillow or something over my stomach when I’m sat/ laying down because I’m insecure of my stomach.
I wasn’t going to write about this as I know a lot of people will feel like I’m just fishing for compliments but really I’m not, ask anyone who knows me they will tell you that I hate compliments, they make me feel awkward and uncomfortable. I don’t need reassurance either I just feel like I needed to express myself somehow and this is my blog I can put whatever I want on here as long as it’s not harming anyone else.
someone once told me “to be called beautiful you must be beautiful on the outside and you peri are not that maybe pretty but not beautiful” I have relented that and have taken it pretty literally, I don’t even think I’m pretty so what I’m I? I always thought you could be beautiful on the inside as well and that everyone is beautiful in their own way but apparently there is a certain look that only clarifies as “beautiful”
Im all for laughing at myself but my looks is a sore spot so when you joke about them they are the jokes which keep me up and night, I even hate myself for not being able to take them as a joke the way they should be taken…well I hope they are jokes…are they?? See this is how my insecurities work, they constantly make me misjudge and analysis people’s intentions.
If i care too much I’m a drama queen if I care too little I’ m a robot….life is hard when your not 100% sure how little or how much you should be feeling or what you should do when you are feeling something.
“I want to be beautiful but I don’t know what that is”….
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