Sorry it has been so long since I posted. I needed to break from blogging for awhile; autism has been very hard on me the past year. I am only now kicking around the idea of blogging again because I always want to have my voice put there to be considered among young, non-speaking autistics, who use assistive communication.
Speaking of assistive communication, I have been learning to use Proloquo4text this year. It is an app on iPad that has superior intuitive predictive text, so that I can really say what I want to quickly, without always having to type out every letter. It takes a lot of practice to learn to scan the predicted words visually and choose the word I want, instead of impulsively tapping any word I see. Autism is all about non-stop, wild impulses for me, so I’m always working eminent hard against them to choose the right word or the right action instead of whatever comes into my brain that second. It takes utterly so much energy.
Me using proloquo4text
As much as I love learning Proloquo4text, something about it infuriates me; that I didn’t have it at the age of two or three years old, and that I wasn’t given any technology to communicate until many years into non-speaking autistic life. There is simply no reason that autistic kids can’t use communication apps at young ages. In my case the iPad wasn’t invented when I was that young, but for kids now there’s no reason not to start technology communication apps early. As soon as speech is delayed they should start using AAC I think. All speech therapists should know this instead of focusing too much on verbal speech. Communication happens in many ways and they are all valid, not just speech.
I always will be passionate about this because I didn’t have any way to really communicate until I was 12 and started to learn RPM at school. The ever present mounds of frustration over not talking have left their scars on me even now. Autism has enough hurdles to jump, why make them more and harder by limiting the ways we can communicate, all over clinging to verbal speech as the only accepted way?
Autism is the mother of so much heartache in people’s lives for the wrong reasons. Autism is not a wrong way of being, it’s different, and in some ways superior to typical.
Autism gives me an outlook on life that is unique, somewhat due to the fact that I am not constantly talking in response to everything going on. Most people are rather obsessed with themselves and their own opinions, and lack listening skills. A cacophony of talking accompanies most every gathering. Somehow, constant prattling on is comforting to neurotypicals. They conceal their inner insecurities by never allowing a break in conversation.
Meanwhile, because autism apraxia doesn’t allow me to speak, I can listen to all and carefully consider all perspectives. This gives me a great advantage in life, I believe. There is not the expectation on me to come up with the right responses immediately. So, I am able to take time to assimilate what I learn through listening. This is by far the best way for me to learn.
Autism really is a pleasant listening life. There is so much richness to being a captive audience to the eminent orchestra of life all around me.
Me on my laptop listening to music.
New Year’s Day 2016 is upon us. I eminent can’t wait to see what this year has in store for me and for autistic people like me.
We still have a long way to go being understood and included in all aspects of community life. We have to a do a lot better starting at the beginning of autistic lives. Parents need less fear from doctors and more tempered guidance about autism neurology. Early childhood teachers and experts need to realize that autism is not a crisis to be solved, and that little kids need time to just be little. Teachers need to be better educated about the unique needs of autistics; especially the we need more presuming competence, and more understanding of how autism neurology learns differently. Lots of people need to realize that autism doesn’t mean stagnant development, it means different development timeline.
My hopes for 2016 are that we start getting autism right, and are willing to shed comfortable yet incorrect ideas about autism that keep us from getting the education and lives that we want and need. I look forward to the coming year being one for autistic voices being heard and listened to.
Happy New Year to all!
Autism emotional regulation is totally hard for me. I hasten to get overly upset about a lot of things that I know aren’t a big deal, but my emotions get control of me and then I lose control of my body. When that happens I get destructive and lash out. I have broken so many things; TVs, computers, shower heads, windows, couches and chairs, beds, walls, and so very many toys. I often also hit my head and pinch myself. It’s not pretty. I know full well that I shouldn’t do it but my emotions rule me in in that moment of meltdown.
Autism has been a lot like being The Hulk at times.
Roller coaster emotions can seem to take a life of their own. I try hard to be even keeled and it takes a ton of energy to do it. Sometimes it takes all the energy I have. I can’t seem to make some people understand this about me. I promise you I don’t melt down because I want to, or because it’s going to have a good outcome for me. I think that notion is purely ridiculously assumed by others that don’t get it. Poorly aligned neurons that make connections between emotional and coping parts of the brain are the culprit. My brain will hopefully mature in the emotional realm over time, but right now it’s not there.
I need to try to avoid things that are emotionally taxing for me. This is utterly not me trying to get out of doing things! Sometimes it’s not apparent to others what the taxing things are to me, and that makes it hard for everyone. For example; Mom didn’t realize that listening to NPR news in the car was emotionally taxing to the max for me. I can’t process all that killing and evil, it’s too autism overwhelming. Ever since I asked her to turn it off it’s been much better. I still have a lot of emotional problems that plague me though. I think many autistic people do.
Take time to consider if the autistic person in your life might be emotionally overwhelmed too.
Me walking in the forest calmly
So much injustice reigns over the disabled, and the privileged shirk their responsibilities instead of being loving to their fellow man.
Ordinary man is charged with taking care of others as the most noble of pursuits, but the work of care giving is probably the most belittled work there is. Someone making their life’s work caring for even one person is doing God’s most important work, totally. But, these dedicated people get little to no support and their pay is no more than a pittance of soot. Morale in these jobs is low and lonely, but they are so vitally important and so loved by those whom they steadfastly serve and help. Sometimes they get no breaks and no time to themselves.
Moms in particular have so much on their plates and can be so maligned just for having kids, and especially special needs kids, and can be said to be doing nothing when they don’t work outside the home. This attitude says a lot about what our society values and devalues.
People need loving care and to have bonds of trust. Kids like me and others with intense needs, arrestingly require another person’s support. That is not a bad, or sad, or burdensome thing, and we don’t need to feel bad about our state of humanness and what we need. We have as much right to exist and to be loved and supported as typicals. So it alarms me when I see that being a care giver has so little respect and support. These people are the backbone of society and are vital to the health and survival of legions of humans. They deserve our utmost respect and our tangible support for the work that they do.
I love my care giver mom and want her and all moms and carers to have the support and respect they so deserve. We are truly out to sea without them.
Spring awakens senses to all creation.
Autistic mind elaborates sounds of birds calling out to the creator, “we are made to beautify the world with life!”
All things play to the orchestra of creation singing, “awake! All things are made new!”
Even living aligned to neurological normalcy you will someday pass away. Autism spring dons appreciation on all life and lives.
Birds aren’t small to God, He sees each fluffy fat one with affection. How much more does He love autism me and autism you?
Esteem life to highest regards; we all can be made new in spring.
Shoveling last of snow from my yard.
Love, Autism Henry
Most people don’t know that non verbal autistics are of sound mind. Upon seeing us do moves like flapping, rocking, or moaning, they assume we are unintelligent. People then proceed to talk about us as if we don’t understand what they are saying. This means we have to endure horrible untruths being said about us without being able to respond. No wonder we run off to escape elope. No one can just sit and endure that without blowing a gasket.
Sometimes people ask mom questions about me like:
“Is he low functioning?”
“Is he in regular school?”
“Will he be able to live alone someday?”
“How do you cope with his autism?”
Or best yet,
“Is he violent?”
These are all both assumptions about autism and questions I could answer myself, if asked. Sometimes mom gives the wrong answer but she doesn’t mean to. Other times I want to answer but the person doesn’t understand that I need additional time to spell my response on the letter board.
Aligning my way of communication to the verbal order of doing things is alarmingly hard. At times I feel like I’m the only one expected to change my way of doing things, but that will never work, and isn’t fair either. Anyone would think that it is just to make sure that someone using a wheelchair to get around should have a ramp, or a wide door so they aren’t excluded from places and from people. Autistics that aren’t verbal need accommodations too so that we aren’t excluded. Sometimes that requires people to make more effort than they are used to, but the work pays off when we have a woven tapestry of everyone strong together.
Let’s make it happen.
Love, Autism Henry
Poster about me I did for school.
All people communicate but not everyone talks. Some people talk a little but not conversationally. Some people say words and phrases out loud that don’t match what they really want to say.
Sometimes I use talking words but I am still very much non verbal. Saying words out loud is not always possible or accurate for me. My pronunciation of words isn’t totally clear, and I say words in different order than most people when I say them. I can very much more fully express myself using the letter board, or Proloquo2Go.
Many times I say nonsensical things like, “Larry boy!” or “Go back to green house!” and I repeat it many times for no reason. I hear myself and think, boy, I sound ridiculous; and I wish I could stop but I have no control.
When people ask me things I know exactly what I want to say, but there is an ever-present blockade between my brain and my mouth. It is extremely frustrating as you can imagine.
Especially damning are the assumptions that my intelligence is low because of my thwarted attempts to respond the way others expect; with verbal words. I can remember a time when a person said to Mom that I have a very low IQ of 40, and I wanted to scream, NO! But I couldn’t. It was horrible not to be able to defend myself.
I sincerely, altruistically, hope and pray that more autism pros like teachers and doctors will realize that autism causes major issues with getting the body to cooperate with the intentions of the brain to respond, but ability to comprehend is unaffected. This will make way for more appropriate help for autistics.
It’s been a long time since I posted here. Since the last time, a lot has changed.
School didn’t work out well for me, and I had time off before starting at a new school. I went there for seven days before Christmas break and I’ll go back after break. It is a very small school which is nice, and all of my classmates are autistic too. So far I have loved music therapy and gym, but the rest has been a hard adjustment. I get very consumed with anxiety and upset and do things I shouldn’t like pull the fire alarm. I know I shouldn’t do it but my impulse to do it is so strong that I’m powerless to stop myself; someone else has to stop me. I’m hoping that as time goes on I will be less alarmed at school and will do well there.
In retrospect, I think a school like this would have been good for me years ago; they have a totally different set up that is more aligned to the needs of autism. There are great things like music therapy and bikes we can ride in the hall after lunch. It’s also eminent awesome that there are different ways offered to communicate with teachers like iPad apps and keyboards to type on, and pictures too. One more great thing for me is that I don’t feel conspicuous doing normal autistic moves and vocals like flapping hands and moaning, because it’s normal there among us autistic kids.
I hope this school turns out to be the right school for me, and that I can align autism to calm daily for ultimate success. I hope you can pray for me that it works out.
Love, Autism Henry
Christmas I got Blokus an awesome game
Sorry that I haven’t blogged in awhile, I have been acclimating to my freshman year of high school. I have had some hard times and some good times. I was getting very anxious and upset in some of the regular ed classes I was in. Autism found it hard to deal with the expectations to stay quiet and sit still. I didn’t want to disturb anyone and felt eminent conspicuous. Faced with that as a daily prospect I was getting anxiety very badly. Also I couldn’t concentrate well enough to do work consistently using RPM. So, now I am getting the same regular ed curriculum but in small special ed classes. This is working out great so far. I also got my lunch switched so I can eat with my kindred autistic friends Alec and Anthony. This helps me so much not to feel alone at school.
There have been a lot of good people along the way helping me to do my best. My case manager is totally, radically awesome, and aligned with autistic ways and quirks. My aide is wicked awesome and so nice to me. We always like the same country songs too.
I hope I can soon extend my school day to be as long as everyone else. I’m only going for four hours right now, but there is so much more I want to do and learn. This is the first year I am taking an actual math class. Before I was doing functional math that bored me to death. No one realized I could do math because I had no way to show what I know until I had RPM. Now I’m in algebra and I totally love it. I want to teach math someday. I also love world history and can’t wait to do more units.
Autism challenges can be hard, but with out of the box solutions like movement breaks and schedule accommodations, autism can be successful at school. Autistics being part of the school community is important because autistic people are everywhere out in real life.
These are my red headphones. I wear them to muffle eminent noise that taxes autism sensory system. Very useful at school.