Comming out, telling friends and family you communicate using AAC

Recently I have found myself struggling in needing to talk to more family and friends about AAC and my need for AAC. It is something that for me is often scary, it is frightening to family and friends about your need or preference for using AAC to communicate.  It is scary not know how they might react but it can be even more frightening when you do have some sense on how they might react, so for Autistic speaking day I want to talk a bit about coming out on AAC use.

For those who do not yet know AAC stands for alternative augmentative communication these are non speech based forms of communication, some examples would be Sign language, Braille, picture cars, letter boards and  dedicated speech devices or tablets with communication programs on them, but so too body language, books, news letters, emails,, notes letters and even the Internet are all also forms of AAC . So in reality everyone uses a form of AAC, this is something most people don't seem to realize, and even though people almost everywhere use and even rely on some form of AAC daily, the forms autistics may use such as using a tablet to speak are all to often met with resistance 

When it comes to Autistics who have little to no verbal speech at all Often we and our families struggle and have to fight to gain access to AAC. All to often there is a fight just to get AAC methods covered or provided through insurances or through school,  there is all to often the idea that an autistic must prove we are capable or here before anyone is willing to believe in us, or to see us as capable and worth putting funds and efforts towards providing AAC,  this is an attitude that needs to change! Often when a family wants to look into AAC for their loved ones they will be discouraged by being told it is to costly, their child needs to prove themselves first or worst of all they are "to severe" to learn or use AAC or it might "hinder the preffered verbal speech" this is something that has been proven to be wrong and it has actually been shown on several occasions that implementing and providing a comprehensive AAC system, modeling how to use it in many individuals has encouraged verbal speech development. But far more importantly it provides a path to communication and let's our voices be heard,  even when a school or insurance provides AAC it can be a fight to get friends and family to accept the need for AAC, they may try and push for speech, AAC isn't valued like speech is and our basic rights may be Violated by having our devices or AAC tools taken from us as punishment especially when we are struggling, having a bad day or just are in a terrible mood!

While people might be familiar some with the struggles in getting  AAC for those of us who are non verbal or minimally verbal, there is a side that is rarely known about and almost never discussed are the issues Verbal Autistics experience in getting access to AAC, as well as the issues we face in getting people to both understand and  accept our use of AAC for communication. when we have some level of speech especially when people outwardly view our speech as being good or even exceptional speech we are not perceived as having any communication issues or challenges, and it is often believed we don't need and won't benefit from the use of an AAC device or system!

The truth is when we may seem to have adequate or even excellent speech we may still benefit from AAC and believe it or not in spite of having great speech in some cases we still may really NEED to have and use an AAC system. There are many Autistics I have spoken to and know many other Autistics who use AAC when they lose the ability to speak, something that many "verbal"  autistics actually have to deal with, when this happens we can't speak period, this is a situation in that the need for AAC should be pretty clear!  However people often will not believe that there is a real need for AAC and will often accuse us of "faking it", "seeking attention" or trying to avoid something by not answering when we truly can not.

For many of us despite  having some speech or even having good speech we still struggle on a daily basis to use our speech to communicate and though it isn't obvious, things people assume we are able to do such as expressing our needs or describing things or events, we struggle to do so through speech and may be unable to express those things through speech even when we are able to tell you all about something we love, but through the use of AAC we are able to communicate these things far better then we can through speech. In fact there are many of us who have a brain body disconnect that means what we can get out of our mouth is far less then what we want to or are trying to express, and sometimes it will be in no way related to what we were trying to say at all, 

this is something I struggle with a lot, I also tend to lose the ability to speak often in stressful situations but also in over load and sometimes for no reason at all. For me speech also causes a lot of issues and impairs my ability to process visual information, and actually causes many challenges and impairments for me that I have written about in other posts, for all these reasons, even though I gained speech after being delayed in speech as a child  I gave up the use of speech except in a few special situations, this wasn't something I decided over night, it was something I put a lot of thought into and discussed with doctors therapists and  a few close friends and family. I won't go into the whole story here as I have detailed it in another post, the short version of it was after a lot of work and testing it became clear my ability to communicate and do so effectively  through AAC  was significantly greater then my ability to do so through speech, we also found that after long periods with out speech a few areas I had severe impairments showed marked improvement though far from being completely fixed, things such as awareness of my environment coordination body awareness all improved, though I still struggle with them when I use verbal speech for a long time these become much more impaired. So it was agreed upon by my doctors, therapists, friends and family and even my mom! that  inspite of having verbal speech i do in fact need AAC and I benefit substantially using it op as my main form of communication,

While I have the support of doctors, my mom and a few close friends and family, There are still people in my life who i don't typically see often or interact with much that I still need to discuss this with, and with whom I need to explain everything to, Until I am able to talk to them about this I often will turn my verbal speech back on when interacting with them, This can be hard for me to do and is very stressful, I often feel like I am hiding part of who i am from them and sometimes this can sen me into a spiral of doubt about my need for AAC, even though that is silly, it happens because the whole time I am with them i am trying to figure out how to explain it all to them, I am thinking about all the things they might ask or say and i need to plan out how to reply to those things and I also need to think about the criticisms i might get after explaining it all so I can be ready for them, I know this will take time for the people i am explaining it to to understand and process, so i worry about that too while scripting how to talk to them and all to often i fail at getting it out,  So even though I have been using AAC for my primary form of communication for a while now I am still  needing to  discuss this with friends or family members who have known me for a while and who know me as being "verbal."  I need to find away to explain this to them and hopefully help them understand and accept AAC as my primary form of communication and really how i need to communicate.

 This is something that can be really hard to get people to understand. There are still people in my life who I still am struggling to get to understand, I know I am not alone in my struggle as a Verbal Autistic in having my need for AAC be understood and accepted, I know this is a struggle almost all verbal Autistics often have to battle with when they use AAC,  weather it is for short periods, on occasion,  as their predominant form of communication or to simply help them express themselves better when they feel it is something they can communicate better through typing;  using AAC will  often be met with resistance, doubt and criticism,   Here are just a few examples of the criticism and challenges verbal Autistics that use AAC may face  when using AAC or discussing their desire or need for AAC with friends and family 

Criticism

"You don't really need that"

"Then they will never talk"

"Your faking"

"You may loose verbal skills"

"But I love your voice"

"It's inconvenient"

"Your just doing it for attention"

"But you never needed AAC before"

"You only have mild autism you don't actually need this" 

"that us only for people who can't speak at all"

"You speak fine,"

"You don't really need it there are other with real autism who can't speak at all,"

"At least you. can speak" 

"But it's so slow"

"But You can't use it while you work" 

"But i know someone who has a relative with severe autism who can't use AAC or speak at all so you shouldn't use it, you don't really even need it"

Theses are only a few of them there are many more but I'm to tired to remember them.  But these are things we often hear, when a verbal autistic comes out to you about needing AAC 

remember when you send a text or an email out on Twitter or face book you too are using a form of AAC,  everyone has the right to use their preferred method of op communication, 

When I first came out to my mom she was very skeptical and I promised to use speech with her in private, with time she saw the difference using AAC  made for me and the ways in wich it improved my ability to communicate and my ability to manage in times i would have otherwise not been able to, over time I have slowly come out about my need for AAC to others and I have had a mix of reactions.over time my mom not only accepted my use of AAC but she was very supportive of it and that meant the world to me!  Still I have people I need to come out to about my need for AAC and that scares me, I worry they won't understand, but I can't keep using speech with them just because I am afraid to talk to them, it isn't being true to myself, it is harmful for me to do so and it takes resources I need just  to be able keep up the verbal speech for them. 

Coming out as an AAC user is hard and scary especially if you have verbal speech,but we need to be able to come out to you,   Please keep in mind not to use any of those phrase I listed in criticisms  

The truth is most of them are wrong and all are damaging. Many of them comparing the verbal autistic to another autistic you perceive as having it worse are not only hurtful they are degrading and insulting to both autistics, the verbal AAC user and the autistic you view as more severe. Both have equal right to AAC, everyone has the right to their preferred methods of communication, please also remember just because someone can't speak it doesn't  mean we aren't communicating! Behavior IS communication!! Presume competence in all cases of autism!! I can't stress this enough!

Please do not compare us to other autistics to dismiss our challenges that's not ok and it is degrading to them overlooking their strengths and their value as a person. the truth is if we are coming to you and telling you we want to use AAC or that we need it, it is because we do need it, please understand this isn't for attention and we do have real challenges you aren't able to see yourself, telling you about our need for AAC is terrifying and what we want and need the most is your support and understanding. It means everything to have that. what we truely want and need most is acceptance,  even if you may not agree with it please do your best to be understanding, trust us and supportive. The thing we need most is your Acceptance not judgement.

Thank you

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!!

They are not Heros! a post to people magazine on Autism speaks

hello,

         Recently People magazine featured bob and susan 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 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!
• their is nothing heroic about demonizing Autism and fighting against autistics that want acceptance, and understanding
• 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!

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

if you want to feature real heros look at the Autistics and our families who are fighting for accetances, understanding and supports that actually benifit autistic people.look at people fighting the stigma and demonization 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!

Whit German Shepherd standing next to large chalk writing that reads "boycott Autism Speaks!

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! 

                       

                                              

NotSpeaking Not Silent Acceptance, Love andSelf-care: #AutismPositivity2015

 I am autistic and I work hard to bring change, I fight for acceptance and fight the stigma of autism, I fight to bring reform to autism service dogs, I fight to get the Mason alert in place, I fight to promote acceptance and under standing and I fight for the right for preferred communication method and the right to AAC and providing a communication alternative to autistics as soon as possible,
So what is acceptance?
Acceptance is not giving up, acceptance is a starting point, acceptance is what allows us to make real progress,
Acceptance is what leads quality of life
Acceptance is no longer working against myself but working with my abilities and limits to reach my potential in acceptance I a, no longer working to be normal I am working to be successful with what I have, it is about supporting myself where I need supports and building on my strengths,
Acceptance is so important for the autistic community, when we are accepted our accommodations we need are seen as known, standard and logical, we are viewed as important an valuable. We are t painted as burdens but as autistic people who have our own value.

Right now advocates have to fight to promote acceptance, and it is not the norm this means thousands of autistics live hearing they are burdens, broken and need fixing when they need to hear they are autistic, they may need help and supports but that's ok, they have a right to supports,  in stead of focusing on fixing them and making them normal the focus needs to be on giving us tool that help us communicate and be successful

Acceptance is recognizing communication and communication needs are different for everyone, AAC is seen as a basic right and not a last thing to try but instead an important first step

Over this year I have been working hard to be a good advocate, I advocate for autistic rights, for the Mason alerts and for reform for autism service dogs these can burn me out  on top of this I have lost 3 loved ones this year so selfcare has become critical for me but what self care is changes with acceptance

When people talk about self care, it is often in the context of daily living activities such as teeth brushing, taking medications, showering, eating dressing ect, areas in which I experience many moderate to severe defficates, but self are is so so much more and takes on a larger meaning when you have reached acceptance and maybe  one of the most important things when it comes to acceptance and when it comes to self advocating


For me acceptance and self care means I recognize my limits, it doesn't mean I have  no issues in defficates in self care but rather that I recognize that I need help with my daily care activities and I recognize I do need help,

For me acceptance and self care is about recognizing my limits

Self care and acceptance are not burning myself out trying to be normal,

Self care is doing what Is right for me

It means Giving up one skill that takes so much from even when it is something others prefer,


It is recognizing that what is right for me isn't what others prefer and not everyone will accept or agree with but something I need to do for me

Acceptance and self care is using AAC in favor of speech

It is not being ashamed to be autistic and realizing I'm not broken, ivy brain works different and I need to do what is right for me and not what makes everyone else happy,

Today self-care and advocacy means not writing the perfect blog post but writing a short choppy blog as best I can and working on a better one another day

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