Happy Autistic Pride Day

Today is autistic pride day, and I really don’t have much I know what to say,  ca months ago I wanted to be sure to have some big post out for this day, but honestly? I’m still struggling to get back into the swing of posting again, and right now there is just so much going on in the world and in life  spoons are really low, so I want to keep it simple,  

Happy autistic pride day, remember to celebrate neurodiversity today, 

Uplift autistic voice,

Center the voices of Autistic PoC today! 

Presume competence 

Everyone has a right to AAC

Communication access rights are basic human rights! 

Embrace stimming

You are not a burned 

Your support needs are valid and matter and you deserve access to supports that’s are helpful and not harmful to you as an autistic person!

There is so much more I want to say, I want to make a long post about autistic culture, I want to talk about the importance of aac but right now none of it is falling into words, this year has gone by so fast I can hardly believe it, 

 I hope everyone has a wonderful autistic pride day! 

Autistic Speaking Day I'm just going to be me

growing up I spent years learning very hard how to blend in, and yeah I largely failed at it, it seems  but still there are parts of me I blocked up and away  to try to blend, like shimming, I stim, a fair bit less than I did when I was little (though I am told I still stim a lot) adapting my communication and other things,

But 

Blending in is not my goal 

I just want to be me 

I'm tired of trying to fit into everyone's boxes of how they think I /should be,  

Everyone has these expectation 

Either I must be or try to seem non disabled and I must be this (fill in chain of behaviors social skills, likes and dislikes, ways of communicating subjects of interest leaguer activities and interacting here) way to fit in to blend (said way burns out all spoons and is not achievable at all even with my best effort put forward )

Or

I need to be autistic and disabled in exactly /this/ way (fill in arbitrary random expectation of what people expect me to be like and my life line to have looked like as a white autistic CIs disabled female) to have my current needs communication needs/style validated 

If your a certain age you can't like xyz 

If your disabled you can't like (fill in arbitrary things here)

I'm tired of having things that I have learned, skills I have gained relationships in my life and other things used as ways to invalidate my disabilities,

Growing up I went through a phase where I worked hard to blend because I was told and I believed it was the right thing to do, that how I would be successful, happy so I gave it my alll and when this stage hit I sort of failed in horrid ways  it was a mess,  i also wasn't able to properly figure out where and how and that's way to much to write about the day after Samhain, I mostly just stood out a lot more and looked a lot weirder,.....and then I started a weird mix of trying to pass harder while not caring and embracing being the weird one,

I'm still the weird one, the strange one and I embrace that  but I no longer want to burn my spoons to try and pass, I just want to be me,  I'm now learning to accept myself, and my limitations,  and that it's ok to use support  and do things in ways that I prefer and that work better for me.

That doesn't mean I'm backsliding 

That doesn't mean I'm faking 

That doesn't mean I'm trying to be deceptive 

That doesn't mean I'm lazy 

It just means I want to find and do what's right for me 

I just want to be me 

I am going to do what works for me, when anyone else does that it's considered a life skill, many times people find tricks and short cuts that work for them and help them and they are seen as adaptive and unique and resourceful, and everyone is encouraged to embrace themselves and be who they are unless who you are is autistic, then you are encouraged to blend and those things that might help you or things that are useful to you that might be seen as creative in a non autistic and be famous on Pinterest, is now a seen as a nusaaunce accomidation and something you should adapt passed needing, and if you do  for a little while then  your expected to be able to all the time.But here is the thing that's not how our brains work, if we can sometimes manage with out a support that doesn't mean we no longer need or will benefit from it.

And I'm tired of it all

Everyone else is allowed to be themselves, and I just want to be me, and that's what I'm going to do, because I can't afford to burn spoons on pretending to not be me, 

So I'm going to stim 

I'm going to communicate in the way that works best for me (AAC)

I'm going to use visual supports

I'm going to rely on the services I need

I'm going to enjoy my souixie and the banshees, London after midnight, the cure, mission U.K., switch blade symphony,as well as non post punk bands and some metal 

I'm going to switch between black clothes with reds greens and purples and earphones 

I'm still going to carry my pikachu in my backpack 

I'm going to swim and hike and go play at the park and do things I like 

I'm going to study geailge (Irish) and build an Irish vocabulary in my AAC app 

I'm going to hopelfully onday again partner with and use a service dog 

I am Autistic 

I am neurodivergent 

I'm just going to be me and these things are parts of me.

I've never fit into anyone's boxes perfectly ever and I'm not going to 

I'm just going to be me

The actual Autism crisis

TW all the trigger warnings an.iesm, death abuse, and pretty much everything 

           There is a very real and serious Autism crisis

Yes we do have and Autism crisis and it seems t be an invasive epidemic world wide! But it's not what you think! 

The crisis isn't about "the rise in autism rates," something that is largely do to more awareness and understanding about Autism 

No the crisis  is invasive, frightening and dangerous 

The Autism crisis is....

Am invasive lack of presumption of competence especially when we do not have or use verbal communication or when our verbal communication is deemed poor

It's the assumption that those who do use verbal speech need few or even no supports at all,  and the reality their needs are often over looked, ignored and rarely accommodated

autistic communication rights are ignored, before we can have access to a full comprehensive AAC system we are often told to "prove it low tech first," when we don't use AAC 100 percent perfect right off that bay we are said to be in interested, many alternative communication methods are viewed as "con traversal and even when we are clearly typing on our own either the authenticity of out words or that of our diagnosis are called into question

The communication support needs of autistics with decent to excellent verbal skills is overlooked and ignored entirely

The fact that communication and verbal skills are seen as binary concepts

The fact that access to communication AIDS and a variety of methods of non speech based communication methods isn't seen as a basic human right for us,

The fact that people assume we don't communicate if we can't use or don't use verbal speech or an AAC 

The fact we have to remind people behavior is communication 

That children are expected to spend 40 plus hours a week in therapies designed to try to make us  indistinguishable from our peers or as normal as possible while also getting other therapies and being expected to also go to school, childhoods stolen in hopes of making us seem normal 

A growing number of dangerous and experimental treatments and abusiveAnd therapies in hopes of curing us, many of which would be considered child abuse with a non autistic child, prominent example is mms (mini ale mineral solution aka bleach fed to children and administered though enimmas  

The fact that autistic friendly therapies are not seen as a priority and learning to pass as normal is even at the detriment of the autistic individual

The fact RPM isn't more widely available and I'm not sure if insurance will even cover it

The fact that stim suppression is considered a training goal even though stimming is critical for many of us

The fact that essentially dog training techniques are used as therapies on us to train us to act normal.

The fact there are therapy goals at teaching us to play "the right way" (aka the non Autstic way)

The fact it's seen as acceptable to talk about us like we aren't Ben there when we are next to you!

The. Fact that proper clump comorbidy in with being part of autism and don't look at them separately as additional things we have to deal with,

The fact that organizations that claim to represent while ignoring us when we say something is harmful and they will try to silence us and claim to speak for us while shutting us out, spreading fear and stigma. 

It's the attitudes that murdering us is some how mercy, while our killers often parents and care givers  are painted as victims and us the undo burden who they had to endure,  our support needs and challenges are used to justify our murders,  that when we are murdered the reports aren't about how it is an unspeakable act of cold blooded murder but rather about the struggles of our killers, 

The fact society seems to send them message we and our loved ones are better off if we were never born or if we are dead

The fact that we have to fight for our basic human rights and those are often ignored.

The fact that parents showing videos of us at our worst  to "educate" by posting about how hard and horrible autism makes their lives is seen as acceptable and our dignity and privacy not being valued especially in the face of parents talking about their suffering

The fact parents suffering matters more then the Barrie's that we face due to ableism and a societies attitudes about us

The pervasive use of functioning labels that paint an inaccurate picture about an autistic individual and our needs, capabilities and assets, 

The using of functioning labels to silence and function shame autistics 

The fact that being able to type is used against us to invalidate out voices especially if we type well (spoiler how well we type tells you nothing about what challenges, daily struggle S or impairments we have)

The fact that any small success or having certain life skills even if they are not as important as ones we struggle with is s used against  us to silence us 

The fact that functioning shaming is a thing 

The voices of Parents " professionals and organizations being valued over those of actually Autistic people 

The mere fact an autistic person can disagree with something or say "wow that's harmful," or "how would you feel if that was up you," to things like meltdowns p or personal care things being put out on the Internet for the world to see and 100 parents will jump in and attack or harass the autistic person, really all an autistic person needs do is disagree with the something posted by a parent, org or a non autistic and they get attacked.

The fact that there are amazing parents and family members out there who work to lift up Autistic voice, support neurodiversity fight for presumtion of comptenence fight agaisnst all the issues on this list to better the lives of their children and loved ones only to also be dismissed and told they have it easy and clearly don't know what "real autism is,'

this whole "this is real autism," thing often used by people who feel autism isn't being portrayed right often used as an attack on what they see as ?to happy a depiction" and ignoring the fact that autism is complex.

Autstic adults and children are constantly exposed to hearing terms like "burden," "crisis" "Broken," "lost," damaged and "trapped" in reference to us and being autistic and this is seen as ok while "valued," "competent," "life worth living," "being seen as a whole person," and any discussion of acceptance and understanding is seen as"glorifying autism," controversial and radical 

The fact that people take offense to the Neurodiversity movement that basically say different neurology and disability is part of human experience, disabled people and people with different neurologist have a right to our basic rights, understanding  supports we need and acceptance for who we are and it's ok to have different neurological make up and to have disabilities what ever they may be it doesn't take away from our value as a person

The insistence one use of mental age

The idea IQ test accurately determine anything really.

The fact that most of the funding for autism goes into studies about causes, prevention and prenatal testing instead of into studies on what services and community supports are most beneficial to autistics, to adult services and community support or to services for adults

The fact that April is often a traumatic time for Autistics as we are looded with harmful awareness adds that stigmatize us, stories of our peers treating us as humans and being praised for it and inspiration porn, and of coarse lets not forget the light it up blue which is a giant add for autism speaks that  the autistic community has addressed as harmful and is the center of a massive boycott,

The fact that the autistic run and founded events in April for acceptance and understanding such red instead, the blog challenge, and a variety of alternatives to light it up blue are generally ignored drowned out by the things lifted above

The fact that services and supports for autistic adults especially in community supports are rare and hard to find 

The fact most services cut off at 22

The fact most organizations providing service dogs for Autistics will not train them for adults and many are either scam or well intentioned but promoting and using practices/tasks such as tethering that are highly dangerous to both dog and he autistic individual. Even though there are a variety of tasks  that guide and hearing dogs perform that can really help mitigate and manage sensory processing issues.

The fact that poor families, families of color and minorities and females are less likely to receive an autism diagnosis and the gender and cultural biases in the diagnostics and the autism field

The fact most people think of autism they depict a white male child often sad looking

The fact that even though every other disability community has pretty much realized  negative awareness techniques and using pitty to get funds was wrong and damaging so they did away with it like in the 60s or 70s (it's 2 am I don't have the exact date more the spoons to look it up) up yet this is the main way fundraising is done in the autism community 

The fact that electro shock is seen as a reasonable way to treat autism and is just reaching the fear in hopes of having it banned as I humane in the year 2016! Please FDA ban aversive shock therapy!

The fact sensory issues are rarely taken seriously 

The fact that non autistics are praised for treating us like people

The fact we have to fight to be seen as humans 

The fact that passing means our diagnosis is devalued and not means we are denied  out autonomy 

The fact that our sexuality is ignored

the fact that we spend hours in compliance training

the fact that having emotions such as anger, frustration and being upset while normal for everyone else is seen as being defiant and uncooperative,

The fact that autistic is used as an insult now by some

The fact that use of autistic is ignored and even painted are therapy 

The fact that when autistic choose to use identity first non autistic people correct us and tell us how to talk about ourselves and insist we use person first.

The fact we are often given little to no autonomy 

The rampant infantalization of autistics

The fact doctors still tell parents if we don't do X by age 5 we never will 

The fact that the entire focus is to make us normal and not to accommodate us and help us grow with our strengths

The fact you can be denied an organ transplant because you are Autistic

the practice of forcing eye contact

The fact that the world tells us it's better we pass and burn ourselves out completely then we seem even a bit Autistic

The fact that our accommodations and needs aren't taken seriously and are often treated as not real or a burden

The fact that we are seen as tragedies not people 

The fact it's 2-3:30 am  and I can rattle these off the top of my head despite being half awake!

I know I am missing so many more!

This is the real Autism crisis

 The real Autism crisis is how society treats us the Autism crisis is Ableism!

this is a crisis we must address and needs to be dealt with!

this is the Autism crisis Autistics face everydaay!

Image description white Germany Shepard wrappers in 2 blankets laying on a brown leather couch with head  on a white pillow dangling back over the side of the couch

nightmares in grief.

   I dreamt about her again last night, this time i dreamed she ot loose and as it by a car before running off and vanishing, only to be found in our yard hours later in the dark, laying there breathing slowly dyingt taking her last breaths as i ran to her to old her only to have her lick my hand one last time before she passed, ever since nim died I have had dreams like this regularly  each one is different but each time she dies or s dying and is often unable to stand or get up that part makes sense she could no longer stand or get up on her own our last day with  her. I don't know what else to say here but i miss her.

Nightmares are  pretty normal experience in general though they have always been a bit odd in how i have them. Ever since I can remember I have had very vivid, graphic and detailed nightmares often they varied in topic.  they can be so bad that i wake and am afraid to sleep again. I may even get up and check the doors and try to calm myself enough by reading or watching comedy, or a favorite light movie to get back to sleep.for me nightmares have also always followed a pattern, I would go with out a single nightmare for weeks even months and then they would start, one night I would go to sleep and i would have a nightmare and from that moment on I would have nothing but nightmares for 1-2 weeks having as many as 4-6 a night then they would stop; and once again i would be nightmare free for a while until it started again. I still dont know why i have them in this sort of pattern and i still have them like this to this day,

        Last year is among the worst year i have have experienced to date, if not the worst in all honest, because last year i lost 3 very critical members of my family, a cat Lorien (she passed unexpectedly,  my  service dog Nim and my mom all within a short span of time from each other,. since then i have been finding blogging pretty hard, i just struggle to know what to write anymore, but I know my grief is manifesting is not how others might expect. in fact i find it very hard to show grief around even close friends and family, but I plan to try and delve into that in another post at some point. One of the ways that it seems to be manifesting for me right now is in the form of nightmares.

       I am experiencing the losses all over again in nightmares,  this is happening with both Lorien mom and Nim, but often switching around with who, most common ones are mom and Nim., sometimes the events are nearly exactly as they happened and sometimes they are completely different but each time i wake up and i just break down. recently Nim has been the main focus of these nightmares, not surprising as i used to have nightmares about losing her even when she was alive, but it was different then, then i could call her up onto the bed, or more commonly tun around and wrap my arms around her while i cried myself back to sleep in the comfort knowing she was there and it was ok, Now i wake up and she is still gone,  I can no longer just reassure myself "its fine it was just a dream,"  i cant simply "wake up and comfort myself that is will all be ok, because it isn't even if the events in the nightmare were far from what actually happened the end is still the same and waking up only serves to remind me at least one part was real.they are gone, one of my worst nightmares has come true, and now i relive her loss a dozen different ways in my dreams.

i dont know what else to say

   

Crusading against hate! autis, speaks founders are NOT heros!

  hello,

         Recently People magazine featured bob and sussan wright as "heros among us"  They got a huge cover page and a story of coarse but here is the thing People if you had done a little research first on your subject matter you would have learned very quickly

Bobs and Susan wright are NOT heros! 

• there is nothing heroic about dehumanizing Autistics!

• there is nothing heroic in spread fear and stigma for your personal gain!

• There is nothing heroic about fighting to keep autistic advocates out of the discussion of autism

• there is nothing heroic about make an entire group of people feel like burdens and curses to their family!

• there is nothing heroic about SHUT OUT the people you claim to speak for and silencing their voices!

• there is nothing Heroic of parading parents in front of a screen to cry and say how much their child has ruined their lives!
• There is nothing heroic about painting parents and caregivers who murder autistics in their care as victims faced with a horrible burden and turning the murder victims into the villains!  There is nothing ok about demonizing the person who's life was taken from them and turning the killer into a matter in a cry for more help!

• their is nothing heroic about demonizing Autism and fighting against autistics that want acceptance, and understanding

• There is nothing heroic about promoting organizations known for severe violations of human rights like JRC

• Bob and Susan wright are NOT HEROS!!! Autism speaks hurts #actuallyAutistic people! the little good they have done pales in comparrison to the pain suffering, tears and harm they have caused building barriers of fear between Autistics and the community! Period!

white German Shepherd behind "boycott Autism Speaks" written in chalk

People magazine you may ot have realized this but by featuring them as heros and battling autism as a good thing you too have contributed to the steriotyping, dehumanizing, demonizing and spreading of hate and fear towards Autistics

people magazine the very title og your article was steeped in ablism, in ignorance and clearly designed to creat fear, fear of autim, T

My mom recently passed and I miss her more then anything one of her biggest fears was that my disability would mean my life would be valued less, she feared what societies view of my value as a person, or more appropriately lack of value in the eyes of a society that sees me as nothing more then a burden, would permit others to do to me, what rights would be allowed to be stripped from me because I was seen as worth less and a burden due to my autism, and most of all she feared if politics went really messed up I would be on a list of burdens to cull from humanity due to my disability, and while that last sentences sounds pretty extreme and unlikely  the rest of her fears were valid. And they are valid because of how autism speaks spreads awareness, because of how you portrayed autism in your Article,

Painting autism as something to be feared, to be battled paints autistic as less, so often you hear parents of autistic kids fearing what will happen to their kids when they die, well how you speak of autism will effect the answer to that directly, The message you send to the world is about autism and autistic is how autistics will be viewed. 

If the message is that we are drains, burdens and that we destroy the marriages and live of our families then people we see us a such and they will view us as less then human.  And in the words of a friend of mine 

"Here is the problem with the fear rhetoric, it makes people afraid it dehumanizes those living with this disorder, it enables people to see them as less and that is very dangerous!!, extremely dangerous! When you view someone is less it is easier for people to do all sorts of awful things to them, use them as experiments, rape, kill or lock away in some institution where not even their basic needs are met left to sit in their fecal matter. If we present our children and loved ones as burdens then that's how they will be treated! No on will want to help them, they will be seen as drains and their value will be lost to others. And al the things I listed above will continue to happen as they do today! How can we expect society to help and stand up for our loved ones when we are telling them our children are nothing but a problem, a burden and saps on the economy! " (S,D)

No one with autism no matter how mild or severe is less than human because of their challenges, challenges don't take away from your humanity!

Everyday autistics around the world hear how they are burdens, drains, need fixing, our murders are excused, we are told everyday our lives are worth less and burdens to our non autistic loved ones, at the same time our voices are silenced by organization like autism speaks when we try to speak up and say we are here we matter, 

Bob and Susan wright are not heros their organization shuts out and fights to silence autistics and silence our voices, they spread stigma and fear and excuse murder that is not heroic!

if you want to feature real heros look at the Autistics and our families who are fighting for acceptances, understanding and supports that actually benifit autistic people.look at people fighting the stigma and demonetization of Autism because in a world the tells you we ar lost, broken and burdens the true heros are the ones who stand with us in love support and acceptances who lift up our voices, We are not broken, we are not lost we are here we matter and we deserve to be heard! So if you want to highlight heros highlight Autistics, high the parents and allies in autism acceptance who support neurodiveristy and acceptance those are the real heros!!

The need for a better case for Ipads used as AAC

Hello,

 
This is an updated version of my blog post "the perfect Ipad case" When I wrote that post this was the case I was using

Ipad have helped give many Autistics and individuals with many other disabilities a voice, but ipads are often very fragile and break easily as  result many of us but special cases to help protect our voices. over the years I have searched for the best ipad and while there are many great cases but there does not to be any cases with all the features many of us need. below are discussion of the 2 cases I have had with their pros and cons followed by a list of features for the most ideal Ipad case for an Ipad being used as an AAC device

As you can see it was a really nice case and had many great features to it.

1. It is very durable -it does a good job protecting my ipad mum the ever frequent accidental drops, falls,  bangs into walls and waps from the over excited Nimrodel's tail when I return home!

2.  It has a handle!!! - I absolutely love the handle feature to it!! I use the hand frequently and  ad you app an see I have also used the handle to add features to the case it didn't have.

3.  It is soft! -What you can't tell from this photo is that this case is actually a soft rubbery sort of material, (though the teeth marks on the handle might give a hint to that if you can see them!)   The soft material means it doesn't hurt as much when it bangs against my sides, it bounces off of hard surfaces realtivly easily and when it does it isn't very loud!  At night I hang my ipad up on a hook to charge and I do feel that the softer casing  makes this safer for the wall.

However it did have some very clear drawbacks for

.  the fist is a major drawback and by far the biggest is that it is not water proof. For e this is a feature that I really need. Using an ipad for communication as well as everyday basic living I need to be able to take out and use my ipad in the rain with out worrying about it getting ruined in the rain! A water proof ipad would also enabled me to hanging it up in the shower or be able to use it while spending time in the pool, fishing or any activity that may cause the ipad to come in contact with water.

2 it doesn't have a screen protector-while this can be bought at a store I do wish there was one a part of the case.

3  it doesn't boost the sound- this is another big one for me. Using the ipad for an AAC device means I need it to be able to be heard in public  so if the case could boost the sound (especially if it could do it significantly would be highly benificial!


A few months after writing this I got a new case, I got the Life proof case for my Ipad and I have really liked this case,

the plus

it is durable,
waterproof ( though I did have a life proof case leak on me twice so im looking into back up)
and holds up really well to being dropped

(a few of the down sides)

1. no built in speaker (explained above)
2. you have to buy the strap separately
3. Flimsy strap attachment, the connectors for the strap are loops that are relatively easily broken ( I can go through them in 2 months or so, this is a pretty major down fall) *see images below*
4. no built in screen protector (though my screen has held up well an glare resistant protective would be very useful and help reserve battery life)
5. while i can use my head phones o have to use a wire adapter thing cant explain better but the headphones are prone to slip out
6.  I have had a few leaks with past life proof cases especially with my phone but over all this isn't that common

The life proof strap attachment

Another flaw with this case is the audiojack access, while it holds up well being able to use the audio jack require you use an adapter, that is an issue where the adapter is flimsy, as it screws into the case and is pretty much a cord that you plug your head phones into, this can get in the way and be easily broken, (see photos below) , ideally this could be fixed by making a water proof no cord based adapter, that seals the case but can remain inside the case with out risk of breaking or causing obstruction when positioning the case, 

The normal port seal gasket thing a round lack pla skit thing with screw threads and a yellow gasket

The poor gasket inside the case viewed from the inside of the case

The cord adapter to be able to plug in the head phones mes  with a holder attached for the gasket

The end of the adapter cord male plug in

So what would be the perfect ipad case? (most important ones are highlighted)

1.  MUST be FULLY water proof protect against being submerged at the deepest depth and longest time possible!
2. be able to float
3.  It MUST' be able to protect the ipad against, drops, falls, being thrown, stepped on and run over!
4. Shock resistant,
5.  Built-in high quality  Speaker with well Amplifies sound-  this is crucial when using the ipad as an AAC device! *This MUST also be waterproof) one of my biggest issues is the need to have an extra Bluetooth speaker that can be heard in large crowds this means i have extra weight to carry and adjust to ideally a case should have a speaker loud enough this is no an issue)
6. Have a built in Screen protector  *ideally glare resistant*
7.  Have a handle  and a good strap!
8.  Should have a soft outside  (if possible  but the handle should defiantly be soft)
9.  Light weight  
10. Will NOT interfere with with wireless signal or blue-tooth
11.  affordable!!!!! Seriously this shouldn't cost the same as a new ipad! Ideally this case won't cost more then $200
12. Easy access to ports and have a way to use the ports and remain waterproof
13. crush resistant/ crushproof 
14. Has a stand and has mounts you can buy and use 
15. MUST be available for Apple, Android, Kindel and other non apple Tablets phones and other AAC applicable proucts!
16. Fire resistant
17. Home screen protector , (it would be good the be able to block off the home screen button so it isn't accidentally hit and close out of app )
18. Come in many different colors!!!!
19. ideally the ability to have a softer outer case that can be bought as an attachments for easy gripping.
20.  have a cover (otional)
21. light weight
22. Bonus points if it has some way to make charging iPad wireless possible (not sure it that's a thing)

These are features that would be beneficial to many on the autism spectrum and using their iPads as aac devices or just as a general life organizational and maintenance tool.  It is crucial that these device be able to be used in a multitude of various environments and impacts. I pads are very expensive and when your ipad is your lifeline it really needs a case designed to handle everything life has to throw at it.. I really hope that someone could make this case and have it available to everyone! 

                       

                                              

please stop Assuming- what your assumptions of disabilit based are wrong

 
   Please Stop assuming

Please please stop assuming i"m independent, well off, mildly affected have the easy form of autism "high functioning " or whatever else you want to call it! Just because I post and advocate on the Internet! And STOP Shaming autistics who do have independence or a milder form of Autism! Stop using it to take away their voices!

Ok I am going to be straight forward here and honest As I don't like posting about my challenges on social media, I like to keep them private this in no way means I don't have them! Yet somehow people assume I dont. Here is the thing I don't fit neatly into your little box and most Autistics don't!

All too often people see I write blogs, they see I use social media, that I'm trying to get a bachelors degree and I am engaged and they use this to make assumptions about me and decide I am to mild to have significant impairments from my autism, they assume I am not severe enough and so my opinions dont matter, what you don't realize is my fiance is also disabled has ADHD and likely Autistic too, I am going to school because that's what my transition plan was and that's what I know how to do, I have been doing it all my life, if I get my degree I have no idea what I will do after that, so let's out this all out on the table then once and for all!

The truth is......I'm actually pretty damn disabled

Driving-NOPE
First off I can't drive a combination of sensory issue, trouble focusing, delayed reflexes make this something I just flat out cannot do!

Face? "Who are you?....oh right your my parent"
I can't recognize faces out of context, not even my own mother! I have to use other ways of identifying people! I use hair, clothing, context and smell. So in class I can recognize my teacher but if she cut her hair I wouldnt know who she was and would panic when she started class because I would see her as someone else and I would walk out and franticly try to figure out what day it was, was i in the right building? Was class canceled? Did we switch class rooms where is my class? When my fiance cuts his hair i often cry and feel uneasy around him for the next week or two, a few times I almost walked off with someone who had a similar hair cut and outfit to my mother!


 ADLs/self care

In my last neuropsych performed last summer or fall on the ABASS ll  I scored over all in the "extremely low range" and never received above a "borderline" in any of the categories within!" And we were being generous because the truth is most everything on their we checked off as "yes" needed a side note of "with help, supervision and prompting" there are many things I can do I have learned to do I don't process to do without frequent prompting from eat, brushing my teeth taking, my meds putting on *clean clothes*,  to doing homework,  cleaning my room and basic chores, if I don't have someone prompting me to do these things on a regular basis they generally don't happen  and I will go months without brushing my teeth, weeks wearing the exact same outfit only remembering to change my under bits every few days, Even though I have and thrive and NEED routines to survive I need prompting to start them,  I really heavily on a picture schedule app just to get me through my mourning routine, because just getting up and getting ready is often a confusing and overwhelming tasks, but the picture schedule only serves as an aid to help me get started. I without someone prompting me to open my picture schedule I will sit for hours confused and unsure what to do first or how to get started. Before when I had Nim this was only a bit less of an issue since she would always wake me, we had our walk together and then i would come home abd be mostly able to remember to start my picture schedule, but even this wasn't 100% think more like 40 % after Nim died, my world fell apart, and "functioning" became even more overwhelming. Nim was no longer there to signal me and opening my schedules became painful as her care took up a good 50 percent of my daily routine Without Nim I need now more than ever to have someone to prompt me to get started on those basic daily rituals.  However the visual schedule isn't enough, as if something interrupts me or there is a suddenly new step or obstacle (like no clean bowls for breakfast) I will become stuck and begin pacing back and forth and unable to move onto the next thing and may become so overwhelmed with confusion i meltdown. having someone there prompting me helps me get back on track and will often help get me through meltdowns so i can rearrange and figure out an alternative, without this help remain stuck for hours, This is all simply trying to get ready for the day, but it is by no means the  end of it, these issues and challenges extend throughout the day and a simple break in routine or expected plans can cause me to get stuck and become completely non functional.

   

           Sensory issues also play another role in impairing my basic ADLS , One of the reasons tooth brushing is a major issue for me other then remembering to do it and not knowing how to do it right or how long to do it tooth paste is also an issue. Most toothpastes burn when I use them and so I must have a very specific type of tooth paste or I cannot brush my teeth. While I love showers and bath but the feel of towels on my skin after sends a horrible sensation through my body and if the towel rubs on itself i get  horrible sensation in my teeth like i had bit into it that makes my body shake and can cause panic and overload, some days it is  enough to cause me to shut down and break into tears until i can get my body to restart and be able to move on, this is another area where "having someone there" can make a difference between out for an hour or two and getting through it in 30 to40 minutes as they will be able to help by stitching the towel for blankets and then be able to provide a deep pressure that can help get me restarted. After showers and baths i have to be completely dry before i can put on clothes, this is less of an issue with shirts and sweat shirts for me as it is pants, putting on pants while my lower half is not yet dry will also send my system into a sensory mess, This will also cause a long lasting sensory irritant throughout most of the day while my pants and skin fully dry.  Sensory Irritants are things not bad enough to cause overloads and meltdowns on their own but drastically increasing the risk of something else triggering them and that something else can be something very simple a minor and even something i may not normally be affected by.  New freshly washed clothing can also cause issues as it often feels tighter to me which is another sensory irritant and they take several hours to a whole day to feel comfortable in. Sensory issues cause many impairments for me and affect many things like sleeping, eating, dressing and where I can and can't go or do and  there are many of them and they are complicated. In fact sensory issues can make up their own  pos entirely t so I will only use these few examples

Eating

If I have someone helping making and cooking meals for me i can mostly be okish with this but in general I am not, this is another area where I need a lot of prompting as I often do recognize when I am hungry until i'm having headaches and feeling shaky and emotional, even then  if there isn't something easy to heat or just eat to I often won't eat because I can't figure out what to cook or where to start so I become over loaded and wander off and meltdown until I am exhausted and pass out or find a way to forget my hunger until the option of easy food becomes available Another common issue I have is when i am hungry but there is nothing my mouth will accept or will want to eat so  i gain will wander off and not eat anything.  There are a few things I can cook on my own but all to often I get overwhelmed by all the steps involved just like ith my moning routine and without someone there to prompt me i will not make more then one meal a day, though even this can be risky as i tend to forget im cooking and have left things on the burner, I find if i have premade meals or things easy to make like chicken nuggets I am a bit more likely to eat. However getting food is often so overwhelming I generally dont Eat

Other issues I face arround food is texture ,taste and swallowing.  As is to be expected there are certain textures and seasonings i can't eat, my body has strong reactions to them where my throat will refuse to swallow them and no matter how hard i try i just flat out cannot eat them some examples are, many nuts, mashed potatoes, tofu and anything spicy Even when I can eat foods I like they I always need a drink as food gets stuck in my throat really easily and some foods that I like and can eat just fine may be more likely to be regurgitated (not something I can control)

Other areas I have impairments

·         Brain body disconnect (this means my body doesn't fully obey my brain and causes impairments in communication, writing, ADLs and more (this will likely be its own post some day)

·         Sleep

·         sensory issues

·         sensory processing

·         understandingbody language

·         Socializing

·         Meltdowns and shutdowns

·         Communicating

·         Wandering

·         processing danger in real time

·         highly fixated interst

·         finances and understanding money and bills

·         I can't drive period

·         body awareness

·         facial recognition

·         Executive functioning

·         cooking/ cooking safely

·         staying organized

·         managing female issues

·         and more!

        the truth is I have many many challenges and impairments, many of them are things you don't see or couldn't really know about with out spending real time with me. with out spending a day ot two with me or without taking on a job as an aid or caregiver for me most, of these impairments you would remain unaware of and would not know about from talking to me online or maybe not even spending a few hours with me a week. (well depends really, more you wont see ALL of them, but like spending time with me in person where you will see me stim and talk to you through and AAC device and i stuggle with eye contact and tend to hyper-focus,  but wether I was verbal  or nonverbal wouldn't matter since either way you could only really see a few of my issues and could not possibly make a proper judgement on the level of my impairments and disability just by interacting with me. This holds just as true if not more so online and when reading my writings, where i have many errors in grammar and spelling you are only seeing a fraction of what i am struggling with and far far far from all of my challenges.  The truth is  I have come so very far in my challenges and abilities since I was little and I hard to work hard to get to where I am today years worth of OT , play and speech therapies, of doctors and specialists.  thing like doing buttons on my own unless they were snap buttons didn't happen until i was 10, tying my shoes i was 14 riding a 2 wheeled bike? 14 (and that i can't do safely and end up cut up from it so i need an adaptive trike do to issues with body awareness)  holding pencils and basic writing took years  and years, I never did learn cursive and computers made a HUGE difference in my ability to write to express myself!  Yet all to often because I speak of a need for acceptance or i speak out against autism speaks  and can write online and express myself on the internet I am told i am to high functioning to know what real autism is like and people assume I have no real challenges or significant disability,What they don't realize when they assume this is I do have many very real challenges and I have worked very hard to achieve the things and accomplishments I have

        I am not alone in this, this has happened to all of my fellow Autistics, This is a practice a few Autistic friends and parent Advocates and I coined the phrase for called functioning shaming  definition below. This is something that is very harmful and damaging, it takes away voices from Autistics who had to fight to get their voices, Please keep in mind  when someone id advocating for acceptance or boycotting against an organization  you are only seeing a small fraction if their abilities and their challenges you don't know how hard they had to work to get there you don't know what challenges they have on a daily basis and by telling them they aren't impaired or disabled enough you are not only making assumptions based off of what little you see but you are also PUNISHING them for making progress (something you insist you want for your child or loved one) but taking away voices many of us spent years fighting and struggling to get, Voices that could give you insight and help you be able to help your Autistic loved on. so Please stop assuming and listen you then maybe we might both learn something and be able to help each other! 

 please stop making snap jugments about somones abilitiies or lack of ablities off what the post about, stand for or from brief interactions

please stop using accomplishments to take voices away fro Autistics

please stop assuming someone cant have severe disability and impairments and still want acceptance and to be treated like a human

please stop using functioning shaming!
 

                   thank you!

Functioning shaming  (1) the act of taking a person's accomplishments and your perceived functioning abilities based of the fact they have strengths or  abilities in one area and or choose speak out an organization that that talks about them yet shuts them out and is harmful or they choose to advocate for acceptance and understanding,  to dismiss and belittle their challenges and efforts to get to where they are today and silence their voice from the discussion of their disability(2) The act of saying someone is to impaired and disable to have an opinion and assuming they want a cure or hate their disability  because they have many challenges and may not be able to fully self advocate yet / using their impairments to deciding  they have your opinions and thus you speak for them and know what they want and need.  (also using their impairments to overlook what they can do and their abilities. (3) the act of punishing autistics and others with disabilities for developing or not developing skills) (4 The act of using ones abilities in one area or lack of abilities in an area you to silence them or speak over them

image description: purpl backgroound with the text of the definition of functioning shaming