Excerpts from the book... (28% indicates location in the Kindle version of the book, instead of page numbers.)
Introduction: “...I am not a different species, an alien creature, a changeling, a robot, a freak of nature. …my mind is unstrange. I am a familiar word, pronounced with a different accent. I am your mother’s recipe prepared by a stranger. I am your favorite song, recorded by a new artist. I am a human being; I am Autistic.”
28% Have you ever spent half the day lost in the beauty of watching how water moves? Have you ever solved a Rubik’s Cube in less than a minute?
41% They say we have an “epidemic” of autism, a veritable tsunami of Autistic kids.
42% And those kids are going to grow up into a world that doesn’t want them, that doesn’t want to employ them, that thinks they’re scamming the system if they live on government support.
6% Researchers are only beginning to really look at autistic adults in any number. Even though the first people… diagnosed with autism are in their 70’s and 80’s now.
43% We are Autistics and we are better off when you focus your energy on helping us to be the best Autistics we can be. If we look “funny,” people will learn to handle that. They will get used to that.
It’s more important that we feel safe, calm, happy, competent. It doesn’t matter as much what we look like getting there.
If we flap our hands, if we don’t look people in the eye, if we communicate through typing or we speak in a monotone – it’s okay. Those are not the things that matter.
8% I am uncomfortable with eye contact… I do try to look in people’s general direction and I look at noses, foreheads, and ears to simulate eye contact. I look at lips a lot…I supplement my hearing a lot with lip reading.
9% Eye contact is very intense, very personal and … honestly? It’s kind of sexual. It is painful and embarrassing to look into someone’s eyes unless I am deeply connected with them.
< My Thoughts > “Eye contact is very intense, very personal and … honestly? It’s kind of sexual.”
The literature reflects that among individuals with autism, eye contact may serve as a threatening stimulus leading to avoidance behavior.
< My Thoughts > “Other nonverbal communications often get lost for me…”
Persons with Asperger’s (aka ‘high functioning autism’) often experience social isolation in a variety of situations and settings. In the classroom, according to Safran (2002), teachers can also feel isolated from their colleagues, in their attempts to support their students with Asperger’s. But, accepting teachers can signal the student to stop inappropriate behavior and help to keep them to the rule of raising their hand to be recognized; so not to create an annoying situation. Teachers “can find creative ways to connect the student” with his or her peers, in the classroom. “An effective teacher “can usually see the point the student is making…” and thus interpret and help the other kids see the value in what is being said. Teachers can become skilled at facilitating the learning of all students
< My Thoughts > “But I live that topographical agnosia every day and not just in strange neighborhoods.”
According to an abstract written by Gil-Neciga (2002), “Transient topographical disorientation (TTD) is a short-lasting inability to find one’s way in a familiar environment, while the patient remains conscious and is able to recall what happened.” “Altogether, our findings suggest that TTD is frequently associated with a more persistent right (brain) hemisphere dysfunction of unknown cause…” “…possibly a preexisting right hemisphere deficit… causing a sequel of acute episodes.”
29% Maybe you know a little bit about me, what it’s like to be me when you stub your toe. But I live that dyspraxia every day… I have enough balance to pedal a bicycle but I have to use an old step-through frame … because I can’t throw one leg over a bicycle without falling down.
< My Thoughts > “But I live that dyspraxia every day… ”
In individuals with autism, visuo-motor neurons don’t always fire the way they were designed to. So, observing an action and executing that action doesn’t happen because the brain can’t seem to do it’s job. Something a simple as seeing someone wave to you… but you can’t make the mental and physical connections to wave back. Or, when you are walking on a city street, you see the curb coming, and you see others stepping down off the curb… or, stepping up. But you can’t make that happen… no matter how hard you try.
29% And even if you do know a little bit about what it’s like to be me with autism and the dysgraphia (difficulty with handwriting) and the prosopagnosia (can’t recognize people’s faces) don’t make the mistake of telling me “oh, just keep practicing and you’ll get better at that.” You have no idea how much study and effort I have put in.
< My Thoughts > ‘dysgraphia’ (difficulty with handwriting) –
Students with dysgraphia have childish looking handwriting. Take out a piece of paper and write your name and address, using your dominant hand. Now, turn the paper over and write them with your other hand. That will give you some idea of what it’s like. But that’s not the whole picture; besides causing difficulty with handwriting, it causes other composition problems like spelling, and organizing ideas.
29% and the ‘prosopagnosia’ (can’t recognize people’s faces)
< My Thoughts > ‘prosopagnosia’
Kress & Daum (2003) have published the following about prosopagnosia, “in every day life, has severe effect on social interaction. For example prosopagnosic people often find themselves in embarrassing situations when they fail to recognize familiar people at chance meetings. The problem leads to fewer friends and feelings of guilt. In some reported cases, along with not being able to recognize close friends and family, they cannot even recognize themselves in the mirror.”
“Studies suggest that this is not a memory or visual experience problem, but one of brain development and processing. Like newborn babies who cannot focus yet, prosopagnosic people can get other sensory information like motion, smell, or sound of voice to identify the person in their visual field.”
38% You don’t want your child to grow up like me – No you don’t!
32% You want to go out and check your mailbox but there are people out there and you’re not ready to face people with their strange demands and their unexpected questions... So you wait until 3am to go take out your trash and see what mail you got that day.
And you savor the chill night air and the bright stars and take not of the position and phase of the moon and wish you could float up into that blue night sky and hover amidst all the beauty and escape the chaos and pain of a world you have never felt you belonged to, not even before you knew what…or who…autism is.
< My Thoughts > “…escape the chaos and pain of a world you have never felt you belonged to…”
Reiske, et al. (2012), “Worry/Depressive and Avoidance Behavior” are among the possible reasons for people with ASD to feel that they have never belonged. “Separation anxiety, obsessive-compulsive disorder, as well as, communication and socialization deficits may be responsible for those feelings, especially in persons who are more high-functioning on the autism spectrum.”
“Regardless of the ability level of the individual, the person’s own preferences should be taken into account, and there are ways of trying to figure out what is important to even the least communicative of individuals.”
38% You don’t want your child to grow up like me – No you don’t!
37% I live in crushing poverty. I live on SSI (Supplemental Security Income), Medicaid, and food stamps, which means that I live about 20% below the poverty threshold.
73% I think I’m a good person. I know I really try hard to be good and do the right thing. And I am not ashamed of being autistic.
But I do get ashamed of some of the ways my Autistic brain interacts with others, especially when I’ve worked so hard to stop doing those things.
I am who I am and I don’t hate being Autistic but it can be really hard to deal with the parts of autism that make it really hard for me to connect with other people.
37% I entered into sexual relationships with strangers in exchange for a place to sleep and food to eat. It’s called survival sex. Survival sex means abuse.
37% If I marry, I lose much of that and become dependent on my husband, stuck in a relationship that I can only hope stays good because I will have no resources to leave.
Although I am so poor, I feel wealthy and fortunate because it is such a big step up from how I used to live. I have never been able to keep a job, which means before I started getting SSI, I was unable to consistently keep a roof over my head or food to eat.
< My Thoughts > “I have never been able to keep a job…”
Sicile-Kira, C. (2014) “…the adult with ASD need to develop strategies to be a good employee…good coaches will be needed to help put strategies in place to help those with inappropriate behaviors learn to keep them in check in the workplace.”
“Some people on the more able end of the spectrum have found the college or university environment a comfortable place for them to learn and even work.”
Now there are so many opportunities to get an education by combining ‘brick & mortar’ and an ‘online’ settings to achieve various degrees.
57% You don’t want your child to grow up like me – No you don’t!
Be a detective. Figure it out. Fix it. An Autistic kid who is behaving in a violent manner is an Autistic kid who is seriously suffering on a daily basis and needs a lot of help. And being able to speak doesn’t always mean that a kid will be able to tell you what is wrong.
< My Thoughts > “Autistic kid who is seriously suffering on a daily basis and needs a lot of help.”
As ‘Woody’ from Toy Story would say, “That ain’t no happy child!”
Sicile-Kira, C. (2014) would say that “some individuals with autism have ‘meltdowns’ – expressions of frustration at themselves or others. It’s important to understand that all behavior is a form of communication, and trying to understand why a person is having a meltdown or participating in self-aggression is important.”
“It could be that they are in pain and don’t have any way of communicating this. They may be in sensory overwhelm, or in the throes of a PTSD (post traumatic stress disorder) flashback. Over time, individuals can learn to self-regulate.” Get busy parents and start ‘detecting’ on your own, you know your child better than anyone on the planet!
39% You need to teach your child how and when to ask for help. It is just as important as teaching them how to say no and mean it.
40% You don’t want your child to grow up like me – No you don’t!
Disability is about more than impairments or barriers to doing. Disability is about societal discrimination and barriers to being. I am given unworkable “solutions” and told I’m ungrateful and not trying if they will not work in my life.
I am not just disabled by my conditions. I am not just disabled by my difficulties in saying no and asking for help.
I am disabled…by the attitudes it has about what I can do and what I cannot do. I face strong discrimination every day…”you look just fine to me”…
< My Thoughts > ”you look just fine to me”…
Green (2013), in her review of various articles, discovered that much of the literature brings up the ‘invisibility of autism’. Families seem to experience long-term stress and anxiety because of experiencing societies’ expectations of the person with autism, the ‘invisible disability’.
Tozer, et al. (2013), agree with Green’s findings and adds to that, how a family “tries very hard to maintain normalcy.” But, the “family seems to be inhabiting two worlds.” ‘One world’, the inside world, where they understand and work with the disability; and, ‘one world’, the outside world, where to “maintain normalcy” is just as important to them. Attempting to uphold both ‘worlds’ brings on stress and added struggles within the family. In a way, ‘maintaining normalcy’ to the outside world makes the autism even more invisible. And, the person with autism (who is passing as normal) is “less likely to socially negotiate” their authentic place in the world.
10% Autism is a fluid thing. …I often find myself unable to do something I could do the day before (and simultaneously able to do something I couldn’t do the day before).
< My Thoughts > “I often find myself unable to do something I could do the day before…”
I just wanted to say ‘this’ about ‘that’… Parents and teachers are often completely puzzled by this kind of event. As parents and teachers we make all kinds of excuses… for ourselves and our children… ‘having a bad day’… ‘must have forgotten from one day to the next’ … ‘not feeling cooperative today’…and so on. You can’t seem to get the correct answer. Can’t get the sequence right… Oh, my socks go on first… not over my shoes. Sure, sometimes there could be those reasons, but mostly it is because the neuro-passages are not connecting at that moment in time.
Teachers may even get a note from the parent stating, “She seems to have forgotten how to pull up her pants. Are you still working on that at school? We have to be consistent with her you know.” And, I’m certain there are days when the parents have had a note from the teacher asking the same thing.
Some days our brains are firing on all cylinders and some days they are not. You have probably experienced this yourself. We neuro-typicals just go get a latte and move on. People with autism can’t make just drinking a latte work for them.
38% You don’t want your child to grow up like me – No you don’t!
73% For me, the hardest thing about living Autistic is how much distance it puts between me and others… because of my sensory sensitivities. It’s hard for me to go out in the world all day, every day because the world is filled with bright lights, high-pitched sounds, bright colors, fast movement. The world is exhausting…
< My Thoughts > “It’s hard for me to go out in the world all day, every day because the world is filled with bright lights, high-pitched sounds, bright colors, fast movement”
Thompson (2012) tells us that “Systematic desensitization to textures, tastes, or specific types of tactile sensations (like water) can be conducted to improve tolerance.”
He goes on to tell us that knowing a person’s ‘sensory profile’ and ‘sensory alerts’ can allow for better functioning in one’s ever changing environmental settings. This also allows one to know what type of ‘sensory diets’ provides for one’s sensory needs. But, he claims that there are few empirical studies to support these ideas.
Along with this, he mentions “Auditory integration therapy is a type of sensory integration for autism that has received considerable attention. The proponents of auditory integration therapy suggest that music can “massage” the middle ear (hair cells in the cochlea), reduce hypersensitivities, and improve overall auditory processing ability.”
As a teacher in a Primary Autism class, I did have success with one student who could function better when listening through ear buds to tunes on an MP3 Player. Discovering this was my chance to make lemonade out of lemons, so to speak. I had a new classroom aide who thought it was perfectly appropriate to be plugged-in to her tunes all day. I cannot tell you how annoyed I was with her. But, I’ve learned to pick my battles. When she was meeting task resistance from an agitated student one morning, I had an epiphany.
As our guy was winding up for a big meltdown, I said, “Michelle, put one of your ear buds in his ear.” I’m not certain which of us was more startled, but Joey immediately calmed down and even initiated working on the requested task. Okay, so now I had two of them with ear buds in their ears. Oh well, at least now it had a purpose! And, this was a long lasting solution, the parents quickly got on board with two MP3players, one for home and one for school with tunes more to his liking.
Therapists were less enchanted with the idea and thought it should only be used in a reward scenario; I figured I could ‘eventually’ work towards that. Besides, they couldn’t argue that seeing this child with ear buds in his ears was not only age-appropriate, but trendy. Smiles.
Again, there is no consistent evidence that these things work, but as a parent and teacher, I feel that these cost friendly and non-invasive methods are worth a try. With the caveat that ‘what works once, may not work again’ or, the ‘novelty’ peaked their interest for awhile, or ‘not this time,’ but it may be worth a try somewhere down the line.
73% The world is exhausting…
< My Thoughts > “The world is exhausting…”
Autism itself is exhausting. As a parent and teacher the constant state of hyper-vigilance is exhausting. Then add to that trying to make sense of the world and now you have ‘super’ exhausting…. Yes! Sicile-Kira (2014), tells us that persons with ASD “may have a hard time making sense of their world, and so the sameness in certain areas provides a predictability and security missing from an existence that they are having a hard time comprehending”
95% I want to help others to grow as fully as possible into their best selves. I want to encourage Autistic people and their families through my writing and through the example of my life and my never-ending quest to improve the quality of my own life and show through my own actions that an Autistic life can have meaning and beauty, regardless of the measure of productivity or financial success, but also I’m hoping to show that an Autistic can find material success in this world on her own terms.
You don’t want your child to grow up like me – No you don’t!
End of excerpts from the book
< My Thoughts >
In her book, Sparrow Rose Jones refers her readers to very fascinating articles and other sources of information to inform you. My intention here was to give you just enough of the book to encourage you to read the very real and uncut version for yourself. There is much to learn from this candid account of autism. Smiles.
REFERENCES used in < My Thoughts > are:
Kress, T. & Daum, I. (2003). Developmental Prosopagnosia: A Review; Behavioral Neurology 14; 109-121; Bochum, Germany
Safran, J. (2002). Supporting Students with Asperger’s Syndrome in General Education; Teaching Exceptional Children; Vol. 34:5, p. 60-67
Sicile-Kira, C. (2014). Autism Spectrum Disorder (revised): The Complete Guide to Understanding Autism; New York, New York: Penguin Random House Company
Thompson, T. (2012). Making Sense of Autism; Second Edition. Baltimore, Maryland: Brookes Publishing Company.