Through Different Eyes: How People with Autism Experience the World

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Biology 202
2003 First Web Paper
On Serendip

Through Different Eyes: How People with Autism Experience the World

Alanna Albano

Many of us have heard of the neurological disorder called autism, and have a general sense of what the term "autism" means and all of the typical behaviors that belong in its category. Yet, I must question how many of us out there who do take an interest in autism really understand how having this disorder can totally distort one's perception of what one experiences in the world. A person with autism senses things differently then we normally do, and also responds to them in other ways – what we would call "abnormal behaviors". Why is this so? According to scientists, MRI research studies have shown that the brains of autistic individuals have particular abnormalities in the cerebellum, brain stem, hippocampus, amygdala, the limbic system, and frontal cortex (7). This provides substantial evidence that autistic behaviors must be in some way caused by these abnormalities. The problem is that we do not know exactly how or why these abnormalities cause someone with autism to experience the world differently than we do. This underlying issue of autism has always greatly intrigued me, and yet the topic of sensory integrative dysfunction in autism has been overlooked for many years. Articles and documents addressing this feature of autism have begun to appear only recently. While conducting research for my paper, I found it a challenge to find articles that specifically talked about this topic that I desired so much to learn about. Thus, the ultimate goal of my discussion is to reveal a misunderstood, hidden world – the complicated sensory dysfunctions that underlie autistic spectrum disorder.

What have we found out so far about how people with autism experience the world? All the information that we do know has been pieced together from observations of autistic behaviors, and recently, the personal accounts of high-functioning autistic persons. Dr. Temple Grandin, a professor at Colorado State University who has autism, has been able to provide us with an in-depth look into the sensory world of autism: "I pulled away when people tried to hug me, because being touched sent an overwhelming tidal wave of stimulation through my body...when noise and sensory over-stimulation became too intense, I was able to shut off my hearing and retreat into my own world" (7). Tito Mukhopadhyay, a 14 year old boy from India with severe autism, has also been able to give us a somewhat clearer picture of what he experiences: "I am calming myself. My senses are so disconnected, I lose my body. So I flap [my hands]. If I don't do this, I feel scattered and anxious...I hardly realized that I had a body...I needed constant movement, which made me get the feeling of my body" (2).

These accounts have provided a special glimpse into the sensory disorders that accompany autism. It is fascinating to see how Dr. Grandin and Tito are living examples of how the autistic person perceives the world. At first glance, the two testimonies seem very much alike to me. Both of these autistic persons' nervous systems are constantly overwhelmed by the sensory input that their bodies receive. However, a much closer look reveals to me the key differences between the two. Dr. Grandin is a high-functioning autistic person whose nervous system receives too much sensory input. Her brain is painfully overwhelmed by the flood of information, and in response to this she withdraws from the source of input by "shutting off" one or more of her senses in a desperate attempt to find relief. Tito, on the other hand, is a low-functioning autistic person who is amazingly still able to communicate what he is feeling to the rest of the world. According to his testimony, Tito's nervous system actually receives so little input that he cannot sense a connection with his own body. His hand flapping response is his attempt to calm himself and gain a sense of his body's existence. The comparison between Tito and Dr. Grandin demonstrates an unmistakable yet perplexing truth: no two autistic people are alike. Although they may share common behaviors, these behaviors will appear in all sorts of combinations and will vary in levels of intensity. It is my opinion that this observed irregular pattern of autistic behaviors is partly what has contributed to its being ignored for so long. I find it unfortunate that researchers in the past had probably cast autism sensory issues aside simply because it was just too baffling.

Observed autistic behaviors such as hand flapping, tapping and /or mouthing objects, toe walking, rocking back and forth, head banging, and vocalizing, along with the testimonies of various autistic individuals, have led researchers to believe that those with autism are either severely over-sensitive, under-sensitive, or both to outside sensory stimuli. Autistic persons have said that they have visual distortions and impaired depth perception of their environment, noxious sensations, and auditory, proprioceptive, tactile, and kinesthetic impairments (1). This is evidence that their nervous systems do not process sensory information correctly, so they feel overwhelmed by the abundance or lack of sensory information that their nervous system is receiving. In response to such confusing input, they exhibit abnormal behaviors in an attempt to either reduce the amount of input their nervous system is receiving or increase it. Such behaviors like tapping or vocalizing allow them to know where their "boundaries" exist in their environment, since they cannot see the world the same way we do (4).

The distortions in sensory perception have been linked to certain brain abnormalities discovered in the brain autopsies and MRI images of different people with autism. Normally, our internal "brain maps" give us a sense of our bodies and involve the regions of the brain that deal with the senses and movement. MRI images depict that autistic persons have scrambled brain maps (2). In other words, the information connections for sensory functions still exist, but they are located in the wrong parts of the brain. For example, face-recognition areas in the brain of autistic persons have actually been found in the frontal lobes, which is quite contrary to the specialized location of face-recognition in the normal brain (2). Autistic brains have been found to be larger than average, and they contain an incredible amount of electrical discharges in the hearing regions. The cortical columns of the brain contain a much higher amount of cells than the norm, and also make extra connections between neurons. This excess circuitry is what is believed to cause problems in sensory function (10). Abnormalities found in the brain stem, cerebellum, hippocampus, amygdala, and the limbic system may also explain many sensory processing problems. For example, the amydala, the emotion center of the brain, is underdeveloped, as well as the hippocampus. The hippocampus controls sensory input as well as learning and memory, so immature growth in this region of the brain would most definitely explain some common autistic behaviors. In the frontal cortex, it has been discovered that there is a significant lack of Purkinje cells. How this abnormality relates to neurodevelopment and mental function is still unclear to researchers (9).

As of today, researchers recognize the common pattern of autistic behaviors, and they have located what and where the abnormalities in the brain are. They have agreed that these abnormalities may be contributing to the behaviors often observed in autism, but exactly how and why is still a widely debated topic. Various researchers have come up with their own specific interpretations of the connections between the autistic brain and autistic behavior. For example, in terms of visual perception, researchers have theorized as to whether autistic persons really do have severe visual distortions of what they see, even though they are by no means blind. Many have debated how and why some autistic persons will rely on touching objects to recognize the identity and location of objects despite their apparent ability to see. We know that parts of the autistic brain that control vision may be under or over-developed, but it is not understood how sometimes autistic persons may be able to see just fine, while at other times they behave as if they were truly blind. From what I have read, it seems that some professionals question if these visual experiences and such are truly caused by physiological problems in the brain, or if they are just mere hallucinations. The second argument seems highly unlikely to me when so many apparent abnormalities in the autistic brain have been detected. It only makes sense that the visual disturbances would be attributed to something physiological, not psychological.

Unfortunately, there has also been an overwhelming reluctance by professionals to rely on the testimonies of autistic persons who are capable of describing their condition. I was rather shocked to come upon this fact while conducting my research. I do not understand why they would refuse to listen to the ones who suffer from the disorder, because they are the only ones who can actually explain what it means to live in the world of autism. Do these researchers believe that the words of a mentally disabled individual are not plausible? Such negative attitudes displayed towards society's mentally disabled have only delayed in the quest to solve the baffling puzzle of autism.

In conclusion, we are left with more questions than before, and no definite answers. I have explained the complications surrounding sensory integrative dysfunction in autism, hoping to make others aware of how much it affects those living with autistic spectrum disorder. Autistic people will respond to a lack or abundance of sensory input by flapping hands, shutting off certain senses, and doing other abnormal behaviors. Several abnormalities have been found in the autistic brain, but many researchers debate what the connections are between these abnormalities and autistic behavior. These debates, as well as disfavorable attitudes towards the mentally disabled, have only slowed our progress in the search for answers. I can only hope that in the future improved research studies and technology, as well as increased awareness and compassion among society, will have helped to improve our knowledge and understanding of sensory dysfunctions in autism.

Bibliography and Additional Links:


1) Can Foundation Page,A Case Study of Distorted Visual Perception in Autism


2) Autism Today Page, A Boy, a Mother and a Rare Map of Autism's World


3) Autism Today Page, Different Sensory Experiences/Worlds


4) Autism Today Page, Possible Visual Experiences in Autism


5) Autism Today Page, Reconstruction of the Sensory World of Autism


6) Autism Today Page, Auditory Processing Problems in Autism


7) Autism Info Page, My Experiences with Visual Thinking Sensory Problems and Communication Disorders


8) Autism Today Page, An Inside View of Autism


9) Pub Med Page, Nicotinic Receptor Abnormalities in the Cerebellar Cortex in Autism


10) Pub Med Page,
Stereological Evidence of Abnormal Cortical Organization in Individuals with Autism


11) Autism and Related Conditions Page, Sensory and Motor Disorders


12) National Center for Biotechnology Information Page, Neurofunctional Mechanisms in Autism


13) Autism Today Page, Sensory Disorder

 

 

Comments made prior to 2007

I think that people using the words mentally disabled contribute to the fact that researchers tend not to trust the descriptions of autistic individuals when discussing their perceptual experiences.

I am a high functioning autistic person and I can assure you that I am in no way mentally disabled. Mentally different, yes. The only thing that disables me is the attitude, including inappropriate language, of so called normal people.

I take great offense to being referred to as mentally disabled. It is inaccurate and untrue ... Gillian Graham, 31 May 2006

Comments

cin's picture

they are smarter

I remember when society labeled children as ADD and said they were slow and to medicate them so they would fit into there systems . But I read about a mom who said NO NO No my kids are very intelligent. So she home schooled all 3 of them.they all had PHD.s before they were 20...... AUTISM IS the next level of intelligence. Why would God not make us to evolve when the level of intelligence and k knowledge today is far more advanced then it was even 50 yrs ago. I'm 55 so I've watched it happen at such a fast rate too. I've got 5 vert smart kids, but I have 13 extremely intelligent grandkids. 4 of them are (ADD) :) 1 is brilliant (autistic) I hate.that I've not been able to figure out his language, but im working on it. I want here more from those of u who could help me to understand more how he see and hears thing. I read fish out of water ..great book it helped me to understand his Frustration with communication . He s 5 everyone treats him like he slow ........everyone except that is for me .he knows right from wrong . He knows what he wants to do....... I just need help understanding him. That is without treating him like a baby. Or that he's stupid . He hates that I see it in his eyes. Honestly would you tell a blind person to read this without technology made for him. And what about there heightened senses.did there brain change to make up for no site. Oh ......love the talk it son gave. He was so right about Einstein. God continue to open our eyes of understanding ...in Jesus name.

JjhS's picture

Perception

I found myself at this piece of writing after deciding to research autism and how people diagnosed as autistic perceive the world around them. My boyfriend has jokingly referred to me as a functioning autistic, but I see a lot of similarities between what is described here and how I sometimes relate to the world. While reading this and all of the responses, I started thinking about how many sounds and lights and electronic hums and general stimuli there are everywhere one might go in the course of a day. The majority of people either cannot absorb all of this input, or else they choose not to: they have trained themselves to ignore/ overlook. It seems by all descriptions that autistic people have much more awareness, somewhat enhanced senses which consequently result in less of a "filter" or mental block that others employ habitually. This often means that there is little or no filter when an autistic person communicates to the world.

Ann Dixon's picture

welcome

Welcome, and glad you found something thought provoking on Serendip. You might also like:

Enjoy exploring,
Ann

Serendip Visitor's picture

I'm 15, with asperger syndrome

I can relate at a great extent of what the article provides

At times I have the Holy Spirit and Satan tell me things over the years since I was 7. Some resulting in uncontrolled behavior with great fear and some allowing me to endure through hardship.

Sumaya kamil's picture

Biology project

I like this topic very much and I am doing biology project about autism . I have to find how autistic people behave differently than us ... I would like to know that

Serendip Visitor Eugenia's picture

college assignment need some feedback please

I have returned to college as a mature aged student.Need to do and assignment and have chosen autism as my topic.need information on how you are discriminated against,how you are perceived in the community,how people react in general.difficulties you face from day to day. These are some of the topics i will be covering in my assignment.I have two nephews with autism however i would like feedback apart from my sisters.Any help would be greatly appreciated.
Eugenia in Australia

Serendip Visitor s begum's picture

aspergers

My child has aspergers he is now sixteen and I wouldnt change him for the world. I am also an inclusion manager in a nursery I took on this role as I wanted to convey to other parents that they could look at their children as a 'normal' child whatever that is every child is unique in their own way and my child may seem strange to other people but to me he is a young man who has ambitions dreams and aspirations he is fufilling these and will fufill these dreams.

AutisticRanger's picture

Educate about Autism Don't Redefine

Growing up Autistic, it is the way that you are treated that is the most difficult part of who I am. That said, we need to educate the general public about the fact that although those on the Autistic spectrum have difficulties with communication, short-term memory, emotions and senses, to name just a few general difficulties, they often have the ability to excel just as much or more then their deficits hold them back. We do not need the APA monkey's to 'redefine Autism' so it is not so 'alarming'. What a crock of balogna, if that is the truth!

People need to understand that those on the Autistic Spectrum are not 'retarded', but rather extremely gifted intellectually (for the majority) and they need to treat us as such. Also, those neurologically normal people would do very well to recognize that thinking out of the box is a blessing. People pay all sorts of lip-service to 'unconventional thinking' or 'thinking outside the box', but then when it comes down to it, those same people will discredit absolute brilliance as stupidity because they are afraid of stepping outside of the socially accepted norm. Of course we need the latitude to cope with our surroundings in an effective way, but that does not mean treating someone like they are stupid.

That is why so many allegedly Autistic individuals throughout time were the ones that came up with the truly paradigm shifting discoveries and inventions. Einstein, Edison, Newton, Michelangelo, Mozart, Lincoln, Washington....just to name a few were all what we would consider today mavericks who, by having a different way of looking at the world were able to make and or create truly monumental discoveries and creations.

Visitor's picture

Article

I wrote an article for my school newspaper about autism, so I thought I'd share it:

The American Psychiatric Association (APA) is considering a new definition for the disorder commonly known as autism, one that effects more than 36,000 children born in the United States each year. Autism is a word that normally haunts parents. They fear that the diagnosis means that their child is going to have a hard and unenjoyable life. But current cases of "autism" may no longer meet the clinical definition. The APA is considering generating a new category of disease called “autism spectrum disorder." Supporters of the proposal say that its more strict criteria would lead to a more accurate diagnosis and effective treatment...in addition to a reduction of distraught parents.

However, many are in opposition to the proposal. This new definition would reduce the rate at which the disorder is diagnosed. It also might make it harder for many families who would no longer meet the criteria to receive health, educational, and social services on which they used to rely. The APA has arranged a panel of experts to reassess the definition of autism, and the association is wrestling with the agonizing mental health question of where to draw the line between unusual and abnormal. Ultimately, this decision is sure to be wrenching for some families.

The proposed changes would probably exclude people with a diagnosis who were higher functioning. In response to parents' concerns regarding the termination of the services they once received for having children with autism, Geraldine Dawson, the chief science officer for the advocacy group Autism Speaks, said, “Although it is possible that some service providers or funders could request a re-evaluation, especially if a child or adult is seeking new services, it is our hope and understanding that the current diagnosis will stand for existing services.” The APA is thinking thoughtfully, and within a few short months, autism may be redefined.

Redefining this term not only decreases the financial and educational benefits that someone who used to be considered 'autistic' receives, but it also changes the way that person is perceived by those around them. This disorder can totally distort one's perception of what one experiences in the world. A person with autism senses things differently then we normally do and also responds to them in other ways. This is why labels like 'autistic' affect our opinions and thoughts on a person with autism.

When asked about her opinion on this new definition, _______ said, "I don't think that that is fair at all. People's rights should not be undervalued or redefined just because of the mental disabilities they were born with. People with autism or people who used to be considered autistic should be entitled to rights as they were before." She also stated that, "Autism is a medical disease with which one is left with for the rest of their lives. Someone who is not diagnosed with autism but has similar traits has the hope of growing out of their social setbacks. I would not necessarily distinguish between them, but I think that if they have the same disabilities and the same needs, it is not fair to take away the benefits because they are not classified as 'autistic,'" when asked how she perceives someone who is 'autistic' rather than someone who is not technically 'autistic' but has similar social skills.

Another ____ student also shared her opinion by saying that, "I do not think it is fair to grant someone benefits and rights because of their disability and then take it away because of this new definition. I would not perceive two people differently if one was diagnosed with autism and if the other did not technically have autism but had the same disabilities because they both need and should receive the same benefits and rights." People with autism have disabilities that make the general public stereotype them as 'autistic', when they cannot help what they are. Society labels those with autism as "not normal." But, what is normal anyway?

Serendip Visitor's picture

Autism

Hello, I am doing a project on autism for nursing school. I was hoping I could please use what you have written on here Arlena Pattillo on my presentation?? I will site you as a source if you give me permission. I wanted to get a parents perspective out there in my presentation.

Also to the anonymous writer with the almost 18 year old son. If I could use your story and I will just site this website as a source???

If neither wants me to. I understand and respect that. Just wanting to get some different stories. Enjoy your kids :)

Thanks very much
Linda Kammerer-Kelowna BC

Serendip Visitor ANNONYMOUS SUFFERER's picture

SUFFERER (i wish i could help with the research)

Thank you for your research into this subject. I'm getting assessed for autism. i might not have it but i'm sure i do. I feel like i have the worst social anxiety in the world. Panick attacks at school almost every day or other day untill highschool (where at worst i couldn't breathe properly) just because i couldn't communicate and nobody understood it. I have always asked myself what was wrong with me since i was 3 and started nursery. Every relationship i've ever had i've lost including family, apart from one friend now who i am yet to scare away! I'm nearly 20 and havn't even had 10 friends. In highschool i heard about Depression and Social anxiety and diagnosed myself with those which got rid of my panick attacks. I put it down to social anxiety and everything made sense although life was still excruciatingly hard as it always has been and i couldn't change it. People blamed me (for my complete social incapabillity), saying i wasn't trying. I was trying, it was that i was just failing, and nothing but failing. You learn where your place is because you realise that when you try you fail, like someone trying to play bowling with no hands. Just as they can't grow hands, you can't grow whatever part of the brain it is you don't have that it takes to socialise, but because it's in your head and you cant see it, people assume it's your fault and that you could change it. But why wouldn't a man who wanted to be a professional bowler just grow a pair of hands? Maybe in the year 3000, they will have worked out the genetic differences with autism and the exact part of the brain that's missing and you will be able to get a blood test, like you would for Downs Syndrome but for now, people are just going to have to start believing that children/ adults might be incapable of communication and accepting that it's not their fault. My parents never got me any help even though i always told them i needed it because they diddn't and still don't want to admit it. Teachers will always think your being lazy when your terrified/ don't know what to do and think your attention seeking when your emotional/ having a panick attack and sometimes bully you and so will family and friends who can't accept it. I just feel sorry for the other kids. It's horrible! I wish the government would trust us to explain it because no one could do a better job right now!

Serendip Visitor's picture

The world from my autistic view

Autistic people do see the world like others I am autistic myself and I see it as others but in more detail and more ways I don't look at the bigger picture I look at the hole picture but pic out the detail that bit that doesn't quite fit in the abnormal bit I also hear the world differently more loudly so I only like quite people as loud people speak loudly so it's like they are shouting constantly and the people I trust and know well will I let shake my hand but if some wants to hug me I have to have known them for years before I would allow it but still vary cearfully and I only like the subjects that have an answer like maths but hate subjects that don't like phse
I feel like other people feel I do as other people do I see as other people see I hear as other people hear i am the same as other people but in more detail
I am autistic and this is my view of it

arlena pattillo's picture

Keep raising the awareness

I think what makes it hard for society to reconize autism as a disorder that affects the nervous system, is that there are too many documentarys and articles that portray Autism as a psycological disorder instead of a nueroligical disorder.

The hardest part for me as a parent to accept is the way others see my son, how hard it is for him to make friends and then maintain the friendships he has made really breaks my heart..because it hurts to see him struggling at what a typical child would not have the same struggles as he does..

But I really do believe kids like ours raise the bar on how we see and percieve as normal..what is normal anyway? what may be normal to one person may not be normal to another.

And for a child with Autism, they don't want to be pushed inside that box to be percieved as normal, they just want to be loved.
I know since my sons diagnoses back in 2007, we have had some tough struggles, mostly with how other people percieved us..but what others think or say does not matter to me anymore..

Great article Keep raising the awareness, Godbless !

arlena pattillo's picture

Gods blessings

I have a bueatiful eight year old boy who was diagnosed with Autism back in 2007, I say bueatiful because that is what I see when I look at him, I love this article because it raises awareness and describes the world of someone living with Autism...the person living with it and their families.
what is the hardest thing to see is that he tries to make friends and yet has a hard time making friends and maintaining friendships because of the social aspects affecting his communication due to the autism. I want to find resources and help so that we can work through this together. I don't want to change my son into what others want to think percieve as normal..what is normal anyway, when I think about it what one person percieves as normal may not be normal to someone else.God has our kids here for a special reason...that we are not to take one single moment of life for granted...and our kids are Gods way of reminding us of that...great article! true and thought provoking...blessings and love to all..

Tammi's picture

Oh my goodness. I thought I

Oh my goodness. I thought I was the only one in the world with the view of don't change my child to your normal and what is normal anyways? Everyone seems to be trying to focus on defficiencies and overcoming them. My child is not defficient, he processes his world and relationships different from others, that does not make him defficient. He does things in his own unique way and processes things in his own time frame. That makes him unique, not necessarily different. When will we as a whole community come to realize the differences are not horrible, they are just different. Our children have an insight to life and an understanding that we may never be able to grasp and to have that unique way should be uplifted as a blessing, not a curse. I am tired of people trying to make my son their idea of normal. How do we truley know what normal is anyways? Love them, support them and help them when they ask. Allow them to make the mistakes you would allow anyone else in your life to make with careful considerations and sheltering from harm, they will learn the lessons much better than the average person in your life because of their unique way of looking at the world.

A.V.Koshy's picture

I agree with your paper

I agree with your paper beautifully written entirely - I wish I could travel through my nine year old son's mind and live there for many days and in his body and then I'd be able to come out and help him.
Please change mentally disabled to differently abled in your paper, it hurts to hear him and others on the spectrum as being mentally disabled.

Serendip Visitor's picture

Nice to hear some positive for once!!

Thanks for posting! This article brought a smile to my husband and my face! We have a just turned 3year old diagnosed on the spectrum about 8 months ago. At first I was filled with anger and rage and forgot about everything else and made my life about"fixing his booboo". After about 5 months in I dropped 7 of his therapists bc I felt they were actually holding him back. I'll admit I don't regret the intervention that he received. Now everyone, therapist and psychologist included can see and HAVE TO ADMIT he is above his age level in many areas. His only deficit now is speech, but he is verbal. He makes me very proud. He is brilliant, and I find myself often times wondering just How smart he is. At first I felt autism was an intruder in my family, now I feel acceptant am even proud to invite it to stay! My family is better for it, and I expect amazing things to come from my son. I enjoy, and brag on his precision, attention to detail, his flapping and spinning are adorable And I embrace it as part of him. His advanced understanding of technology amazes me! His complexity pushes me. And I love it! And the quotes you posted from your son.. Well, I believe my baby probably will and does feel the same. Lol he probably thinks we look stupid when we exaggerate our selves in attempt to get him to imitate. It was very interesting reading this and I feel it was great insight into what goes on in my son's mind and what my attitude should look like when it comes to him and his diagnosis... Diagnosis superhero!!! =D

chad mckinney's picture

I too am autistic!!

I never fit in anywhere and was always an outsider, never had many friends never said or did the right thing, i hated myself for a long time. I just wanted to be like everyone else, when I found out that i was autistic I was excited at first to know what was wrong with me so I could fix it. But i didnt want anyone to know, ashamed i kept it a secret. But that just made me feel like more of outsider not even human. I no longer keep it a secret i try and tell people my story and explain how i think and feel but it is difficult still to get them to understand. As i get older i feel that i am getting much better at it, but i am afraid that i will loose me in the process. I have noticed some of my abilities have dulled with my social integration. But these days i focus more so on sharping my abilities and less on my fitting in with people, and as an outcome i have come up with some awesome creations and ideas. I have even started up my own company to get these products and ideas out to the world, to maybe make it a little better place for all of us. It amazes me that when i am just me and dont try to be like you, how well recieved my ideas, products and art are recieved. I wish i would have just learned that a little earlier. For all you autistic's who maybe reading this keep thinking big there is nothing wrong with you, who knows we maybe the next stage in evolution (I would like to think so, what a beautiful world it would be).
Chad McKinney
Dallas, Texas

Philip Hoad's picture

autistic nomad

Hi chad
Your comments have really hit the nail on the head for me, I am 51 and about three years ago I was diagnosed autistic, I have spent time since trying to find where I fit in, I feel like I am trapped in this body and my creative energy is wanting to get out, I study other people all the time,but need to put my energy into myself.

Londi Dennis's picture

I just met my 21 year old

I just met my 21 year old nephew for the first time and he is autistic. I would like to learn more about this. The little that I do know is that he will not do anything unless I tell him to do it. He isn't potty trained and he doesn't know how to brush his teeth neither take a bath. I think his mom may have sheltered him and not try to help him to learn things... Any advice from you will be appreciated...

arlena pattillo's picture

regards

as a parent of an a child living with Autism all I can say is I live with his Autism too...he is 8 and just learning how to dress himself he is potty trained and has been sice he was four years of age...there are many levels of the autism spectrum which it sounds as if your nephew is on the severe end of the spectrum ...whereas my son is on the mild end of the spectrum and I can tell you there is alot of stress involved raising a child on the spectrum...my son has a hard time with sensory issues and have to get on him for brushing his teeth..he has a hard time being around crowds of people and bright lights and loud noises..is hard for him to tolerate.

people stare at us when my son has a meltdown when we are in public like I don't know how to control my own child, I wish I could control his meltdowns..try to be understanding of your sister offer to babysit so that she can go out and do some grocery shopping a little understanding goes a long way..many blessings to you and your family..your nephew sounds like a special person and maybe for some reason you are in his life ..Godbless

Anonymous's picture

i've never meet anyone with

i've never meet anyone with autism but when i read your article something caught my eye. You wrote that your son knew what people wanted and how they felt as well as the statement he told the his principle. I justed wanted to know though what he meant by "they would probably talk to us"?

Anonymous's picture

People with the gift of Autism being labeled at all!

My son is almost 18 years old. He is a high school drop out. He dropped out of school on his 17th birthday because that is the legal age that a student can make this choice (without getting the parents in trouble), here in the state of Texas. His reasons, and I quote... "Because your teachers are monotonous and have no real connection to students or passion for the materials they are presenting. Because your teachers are more concerned with discipline and fear, than education and respect. Because your teachers place no value on individuality, and when intelligence and curiosity interfere with the lesson plan, their worlds come tumbling down. Because I can see their weakness and insecurity, and I am not afraid of it anymore--they are wasting my time."

This sounds so incredibly arrogant, but this is my son, Mitch. This is who he has been since the day I took him, at 8 years old, into a meeting with his principal and he told her, "Margaret, (addressing her by first name) It's not my fault I'm smarter than you." Quite honestly, he was.

Having an Autistic child is difficult. You spend the majority of their childhood trying to figure out what's wrong with them. Why aren't they like your other children? Did you do something wrong? Why is your child unhappy? Why does your child seem to dislike you and everyone else? Why does this child, who you know is incredibly smart, do so poorly in school? Why doesn't your child have any friends? Why is your child so emotionless? Did something happen to him/her that you don't know about?

I could go on and on. It is a hellish nightmare. What makes it SO MUCH WORSE is the countless relatives, neighbors, educators, counselors, and other "professionals" who draw assumptions and, almost always, the gaze of blame turns to you, the parent.

There is absolutely NOTHING wrong with MY son. That is the conclusion I have come to after almost 18 years. NOTHING. He is a neat human being. His behavior is not the "norm." His ideas are big. His love and emotion runs deep, but it's there. He's narcissistic. He walks to the beat of his own drum. His volume knob is simply an "on/off" switch. There is no "inside voice." There is simply silence or LOUD. For my son, Silence = sadness or frustration. LOUD = happy and comfortable. I've grown to appreciate the yelling.

My son tells me that autistic children that don't talk, can talk; they just choose not to. He says that they are able to communicate in other ways, but we (normal people) can't see it. He says we choose not too. When he was in an autistic educational setting, he was one of the higher functioning students in the classroom. He said that he could tell exactly what the "non-speakers" wanted and how they were feeling just by watching their eye movements and body gestures. He says they communicate just fine. He also says that if we "normal people" would pay closer attention and stop worrying about what is wrong with them, we would be able to see too. He also says that they would probably talk to us.

He was invited to give a presentation at St. Edward's University in Austin Tx a few years back. His presentation was SUPPOSED to be on disability awareness. He put his little powerpoint up on the screen that was titled "Autism...Disability." But then an amazing thing happened. The "DIS" disappeared, and the audience (made up of parents, teachers, counselors, psychologists, psychiatrists, clinicians, etc.) was left with the word "Ability." (There was some chair shifting and voice clearing--as one could well imagine).

His entire presentation focuses on why he is completely normal...and what's wrong with the rest of the world? He draws on the fact that it is speculated that Einstein may have been Autistic. His closing arguement was a question posed to the audience. "What if a doctor had come to Einstein's parents when he was young with "magic pills" or "breakthrough therapies that could cure him of this horrible affliction? What if the parents had accepted the treatment and it did in fact "cure" Einstein? Would Einstein still be a household name and the intellectual powerhouse he is remembered as today?"

Pretty quiet audience when he was done...but, more importantly, it changed my perception of my son....forever.

I wouldn't attempt to assume that everyone has the same experience, but for me and my family, a simple change in perspective changed our lives...and his. We have made sense of his abilities and talents, and embraced the differences that make him unique.

Jane ( care worker)'s picture

autism

I so admire your son and you as a parent i have read a lot of info from scientists etc but what i would prefer to study and understand is autism from a person who has this condition as i feel this is the only way i can best be educated a.d be able to to support the person i caring for i have never seen autism as a disability.just a different way of receiving ininformation it

Serendip Visitor's picture

Your son sounds like a

Your son sounds like a wonderful, bright and intelligent young man! The educational system failed him and how wonderful that he was able to recognize that it was their failure and not his. It sounds as if he is going to do some great things in life and with a parent like you backing him the sky is the limit for him!!

Nancy Howell's picture

That was the most beautiful,

That was the most beautiful, articulated piece. Thank you so much for taking the time to share it! I have taught students diagnosed with learning disabilities for the last few years, and quite frankly, I don't see why others can't see the beauty in the way they think and function. Too often, well-intended folk try to put everyone in a box and label them. The reality is that no one is in a box. When my special needs students meet me, they tell me they are "special ed" to which I reply that I am special and so is everyone. Why others expect clones of themselves is beyond me. Thank God we have kids with differences. It makes the world a far neater place with them in it.

Paul Grobstein's picture

Learning from autism

Nice piece on NPR the other day about how people on the spectrum can also help us all better understand ourselves ...

Autism gives woman an "alien view' of social brains

 

Anonymous's picture

gift of autism

My brother has a daughter and a son with autism. He recently told me a story that in his mind proved that they had communicated without what we would consider talking. Now that I have read "People with the gift of Autism being labeled at all!" I see that they did talk without their voices.
My brother took a toy and put it in his garage that was many miles away from where they lived, his son was with him. He returned to the garage with his daughter, she went into the garage and picked up the toy and brought it home to her brother again. My brother, their father was amazed and wondered at the fact that his children communicated in some way.

Anonymous's picture

people with autism being labled as "mentally disabled"

As the mother of 25 year old son with autism, I have personally experienced the battle (I mean that literally not figuratively!)of having people label my son as mentally disabled. I think it was easier for the people who were responsible for his education in public school to lable him rather than accept that he percieved things differently therefore needed things explained in a different fashion because they did not understand that he learned in a different fashion. Now at 25 he is an encyclopedia of information which he loves to share, manages his own finances, is politically active and loves to travel. We do have to deal with behavior issues that are stimulated by noises. We keep a supply of earplugs on hand and the Ipod is our friend! I am glad we took it upon ourselves to give our child every opportunity to excell in all that he could. I tell the parents of other children, don't let someone else tell you what your child can or cannot do. Let them grow and encourage them in all things.

Serendip Visitor's picture

I am happy to read all this

I am happy to read all this testimony. My son is a handsome and lovable 12 years old autistic. You can feel how many things he knows but that he is not able to bring out. He has words but he is not very verbal. He vocalize a lot. Sometimes I feel like going in his brain and share what he is feeling. It gives me hope when I read other parents experience.
Thank you a lot.

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