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Autism Is Not a Disability, It's a Different Ability

 I originally posted this story in another experience, but it makes more sense to put it here---

I don't really consider autism a disability but most of society does. I have 16 year old autistic son who has a difficult time getting around in what we call the typical world. According to him, we nuero typicals (nt) are the ones with the problem.

 

He feels we get too hung up with things like being polite following societal rules. He doesn't understand why we try to change him to fit into our world. His needs are very few and very simple. He likes order and quiet. If he chooses to talk he talks, if he doesn't he won't. He prefers structure to change.

Why should we care if that's the way he wants to live his life? He's kind and caring and just wants to do his own thing.

I have to say, that I think he's got the right of it. He doesn't bother worrying about what others think of him or if he's wearing the latest styles.

So really, who is the disabled one, him or us?

goddessone goddessone 41-45, F 30 Responses Feb 24, 2008

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I suppose I could come up with a digital camera analogy here. NTs take their view of the world, filter it, process it all to hell and save it as a lossy, poor imitation of what they experienced. Those with Autism take their view of the world and store it away as raw data, which a pain in the butt to deal with but gives the best results. Yes folks, Neurotypicals (including me) are the equivalent of the cheap-*** camera that saves as a JPEG but can't save RAW. If anyone's disabled it's us.

Unfortunately autism can be a disability when it's severe enough where people with it needs to be cared for. But, for many of us, even as adults who has autism, we live by ourselves in our own homes, hold jobs and drive cars. I'm problaby a high functioning autistic and have even operated heavy equipment. <br />
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I've pretty much have grown out of most of my problems but, I have at least 2 problems that are still quite severe, but doesn't disrupt my life other than finding a human relationship totally unacceptable.. Maybe in that case children and adults alike would probably have a "different autism". It has been hard for me over the years to deal with autism and the problems it posed in the workplace.<br />
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So I guess what I mean is that the severity of the autism is what makes it a "different autism" or a "disabling autism".

Believe or not, Autism is a gift! God do not make mistakes...

@2children,<br />
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I agree, I would like life to be easier for my son too. With the way things are right now, I am the one who needs to adapt and I do. Having said that, you'd be surprised at how much you already know about your son. Do not underestimate yourself and your ability to know your son. You'll find ways to adapt too...

My son has autism and his "disability" varies. Like nit have the ability to talk, communicate, write or read. I would do anything to be able to have just one conversation with my son or be able to know what he is thinking. To know his favorite color...to know why he gets so frustrated (probably because he cannot express himself) that he bites his arm so hard he bleeds. Yes if I could I would change, for the better. To be able to tell me what I know he's dying to say but struggles to do. He's only 8 and I cannot even imagine how hard it's going to be for him as an adult. I wish the best for my son and it's obvious I'm not trying to "change" who he is as person but to make things easier for him.

Have you seen the movie Wretches and Jabberers? It describes the journey of two non-verbal men with autism who learned to type as adults. The breadth and depth of what they communicate is truly awesome to behold. Perhaps learning to type could be something for your son? Wishing you strength for the journey.

Damn right-and the older my son gets the more I appreciate him. I wouldn't change him for the world and I truly believe the world needs to change for him. He is honest, he is intelligent, he is pure. I am so thankful for my son and while things like his fine motor skills and sensory processing do need improvement-I would change nothing else about him and I don't consider him disabled at all.

DancingShiva: As far as I'm concerned, diagnoses are tools, nothing more. My son was at a fabulous preschool where they gave him what he needed. When I asked them if we should pursue a diagnosis, they said it wasn't necessary-yet. Slapping a name on him wasn't going to change what he needed. And this was a school that would come to me and say, "We see (x) in your son, and think (y) would be very helpful. May we give him this (therapy/assistance/accommodation?" We gave him formal evaluations so he could access the necessary supports once he switched to primary school. I aggressively sought private evaluations and diagnosis in preparation for a move to a much less enlightened school district.<br />
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Now here's my crazy theory about the explosion of what we call "disabilities:" Many of our children with autism are incredibly sweet and gentle. They radiate an innocence that is beautiful and humbling. They operate outside of the petty interactions we call everyday life. True, difficult behaviors tend to arise from outside stimulus that can't be handled. Often when the overwhelming stimulus is gone, so are many of the difficulties.<br />
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I find myself wondering if humanity is in the throes of trying to better itself. I don't want to get side-stepped into a discussion of creationism v. evolution here, please don't flame me, but I feel that maybe, just maybe, humanity is evolving into something more, just not in the way we might expect.

My son is what they call "high functioning Autistic" and w3 as diagnosed at age 3 as "NOS" aka the doctors don't have a clue! He is now 15. I too have done extensive research for the last 10 years and on more than one occasion have come to the conclusion that just MAYBE we are seeing larger and larger numbers of autics every year because the human race is evolving into what we need us to be in order to survive?

The diagnosis "Autism" ****** me off!!! As not only the mother of a kid with "Autism" but also as someone whose academic background is in cognitive development, "Autism" is a junk-drawer diagnosis. The docs say "Ok, there is this cluster of symptoms that we can't explain any other way so... yeah... let's call it Autism and call it a day and completely IGNORE that totally different things are going on with these kids!" There are at least 6 different diagnoses that are currently just shoved into the ASD or PPD NOS box and it's garbage. My son has moved from nonverbal-poor prognosis to "nearly" Asperger's (whatever that REALLY means) and I couldn't agree more that the DISABILITY is in society that refuses to honor all of its people (and this includes other "disabilities" as well). It's time to stop thinking about "normal" versus "abnormal" or even "spectrums" but to see that people are different. And for folks whose nonverbal/ minimally responsive kids are diagnosed with Autism that lumped together with folks whose kids are diagnosed with Autism that "simply" have Asperger's- it's PAINFUL because there can be so much in-fighting and jealousy that needlessly keeps us from connecting as mothers of kids who society- for very different reasons- rejects in general. We should be banding together -if we had the energy :) - with other mother of kids with junk drawer diagnoses like Borderline Personality Disorder and Oppositional Defiant Disorder and other vague "they don't play nice" labels.<br />
*whew* guess I really needed to vent about that!

Sometimes I think the ignorant people out there, that don't understand Autism are the ones who are disabled, I think people with Autism often times have a better outlook in life.

I don't think it's a disability either, children with Autism are not looking for a cure, they are looking for acceptance.

Exactly Kaykers, thank you....

Bless you...I'm not a mother but I do know many people with autism. I'm always so confused when they are made to seem like they are 'different'. Perhaps they do things differently and perhaps they see the world differently, but normal does not exist. It's an imaginary line drawn by what people expect, and most people do not expect the behaviour of an 'autism child' (forgive me if that title seems ignorant). But just because it's not expected, it doesn't mean it isn't okay.

Emily,<br />
My son saw it that way when we divorced, my daughter didn't. His mothers new husband was Dad and I was "My real Dad". He only likes to watch the TV programs he already has seen. He has only "explored a diiffert thing" in his cooking. He is a fantastic cook. He combines things into a flavor explosion.<br />
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Also, as I look into what we call handycaps in others, I find that I seem to be one of them. It does not display itself as with your son and mine. It is something I have never been able to explain, to myself or anyone.<br />
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I have never heard music as most do, or as they seem to. To me, music is a sound, nearly a noise. There seems to be no pattern to it, it makes no sence to me.<br />
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Yet the work I do, work that came "naturaly" is to work with sound. Not music, far from it. I work to measure and reproduce in a laboratory the sounds made by rockets, jet engines, cars, eplosions. I have done this for some fourty years and am good at what I do.<br />
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I guess that by the standards set by society, I am fortunate that this ability or disability presents itself as it does.

My boy is the same way - he's 17 now, going on 18. I've homeschooled him since 3rd grade. He's a GEM. He thinks there's something wrong with us - but it's typical he likes his world orderly, structured - non chaotic. Doesn't like surprises - they used to traumatize him, now he's just super disappointed and/or mildly disappointed but has to share his disappointment with someone - like to get it out verbally. I think most autistic children/adults are very much like us regular type folk - it's like this: They feel, everything that we feel, but they do so with a much higher level of intensity almost to the 100th power - if you know what I mean. So, if you take that and just treat them like you would any other child, but with the understanding that they just need a little bit more love, a little bit more time, a little bit more explaining, a little bit more kindness - you're going to reach them and they're going to KNOW that you love them and that this is a safe world. The more they know that this is a safe world - they begin to come out of their world into ours. But frankly, I have always loved going into my son's world - it's a neat place to be and when I'm in there with him - I can ever so gradually pull him out into my world - to where we have what is called "our world." If people over hear my analogies speaking to him about something in real life, I may have to say, "Well, it's like this your dad is a fire type Pokemon and I'm a water type Pokemon and we both need to be with our own type Pokemon." Well, now he understands why his Mom and Dad have to divorce - we both have to be with our own type of Pokemon. But on his level - he can comprehend oh so easily - what's going on with his parents without having his world come to an end. He's okay with it - he envisions that he'll end up having 4 people in his life someday - rather than 2- figuring when he parents both find other spouses. Kind of neat how he sees things, huh?

Yes......right on again....thanx..................... Lou

Lou, your son sounds like an amazing man. Too bad we 'normies' aren't always like that. You've been blessed, and I know you know that.

More,<br />
As with much of what you post, you are so ON.<br />
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The simple matter of a home for my son, or a job he can do. <br />
He is so proud to be a janitor and he thinks minnmum wage is great. He has learned to get by those who "look" at him, of those who expect him to understand them.<br />
When his mother passed away, I thought he would move to the house I had bought for him. The last year we began to look for a place where he wanted to stay.<br />
Last Christmas when I arrived at his new mobil home, that he picked out, I asked him where should we go for dinner. He wanted to make a pot of veggie soup. I then learned his old stove had been broken for some time.<br />
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As I spent some time with him and we just kicked around town. I met three women he had sheltered from their husbands. They all took me aside and said the same thing.<br />
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"I thought he was going to hit on me but he didn't. I thought he was watching as I bathed but he wasn't. I sort of offered to be his "freind" but he pretended not to understand. He let my kids play with his cats, he was a male model to them. I wondered what was wrong with me..he turned me down.."<br />
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I do what I do to leave them something. For him, something more than minimum wage. He is so together.

Lou, it's true, autism is so simple yet so complex. Of course the complexity arises out of of society's desire to keep all things the same. To me, society in general is prejudiced.<br />
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As long as a person is viewed as different, then they are wrong, or stupid, or any one of many things. Why must we fear "different"? Why does skin color matter? Why does it matter if a person stims? Why should it make a difference to me or you if Joe Blow downs the street honors a different God, or no God at all? <br />
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None of this matters to an autistic person. That is one of the reasons we have such a hard time 'placing' them as adults. Good luck in your preparations, it's been my experience so far, that preparing for adulthood is far worse than anything we've experienced so far.<br />
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Jman, I'm not looking for a cure. I'm looking for a way to make it so my son can live a quality life, now as a teen, and later as an adult. Because he was diagnosed late in life (by medical and psychological standards) we are forever playing catch up....teaching...unteaching....reteaching....<br />
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He's the one who has to conform...why? This is one place that I have not been able to get over my bitterness at the NT world, and guilt at myself for not forcing the issue at hand when he was younger. I KNEW something was different about him....but I was just a mother, not a medical professional, the only time I was around babies, was when my brother was born....so what did I know? Funny how I knew it all....<br />
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My son has many of husband's traits....amplified as you say...he has a difficult time in crowds, does not like loud noises, of course there is the issue with social interaction too. So maybe that's where the medical community should be looking, it's an interesting theory....<br />
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But a cure? This isn't cancer, or even the common cold....this is who they are.......how do you CURE that? <br />
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There has to be a better way........I'm determined to find it....but if the CURE will also cause harm, then I will continue on the path we have been following, and pray for the best.

I'm right there with you IWM. We are TABs (temporarily able bodied). We sometimes battle with that desire for normalcy. Our son runs up and down the hall and in circles outside reciting movies/stories/cartoons/whatever is on his mind at anyone time - he calls it playing. Different than me, but who's to say it's wrong. <br />
The real challenge so far is adulthood. Finding a place where he can survive and earn a place is difficult. It's one of those milestones that we haven't reached yet - with no endpoint in mind. One day...It is heartening to read about Temple Grandin's success in the work world with a supportive work environment. <br />
Acceptance is the cure - maybe if my son was much younger, I might be more interested. But after years of trials - pangamic acid, vitamin B therapy, hearing training, touch therapy, sensory integration, other miracle cure of the day, etc. I have a pretty well defined filter.<br />
It would be wonderful to "treat" whatever makes nim autistic, but at 22, what difference would it make? How much of his personality has been defined by his capabilities. It would be impossible to erase all those years of that mental process. It's not like he would magically be less resistent to change, his speech would miraculously be understandible, and stop his need to run.<br />
I see many of my sons characteristics in me. I often felt like he inherited much of my traits just amplified. As a child, I had a physical need to rock (back and forth - not musically) - it went on until I got married (again not the musical kind - I still do that on a continual basis). I have always had a need to analyze my environment - which pays off in my career as a programmer/ANALyst. I was the kid who didn't fit in socially. Amplify those and toss in some touch sensitivity, and were not too far off.<br />
In fact, if there was a cure, how much damage would we do to him by giving it to him?

For a long time my idea of autisum was, I guess simplistic. My son was born with a sevear case of dislexia. My efforts had been to deal with that and prepare him for a life. We are both much older now and my efforts have shifted for his life without me.<br />
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Throught his school years", his class was a bend of the "children of a lessor God". How could that be I wondered.<br />
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More recently, I read an article in The Scientific American about autisum. It was quite an eye opener of what they think is going on in these extraordinary people. I was left with the feeling that there was something to be learned here, about how we view this thing we live and the way we have made it so complex.

D...I'm reading your comment with tears in my eyes. Very few people understand how much that first word means to us. There are so many of our kids who will never speak, but each first is like a brand new day. <br />
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Parents of autistic children learn not to take a child's firsts as a given. My boys are 5 years apart, and I remember how many milestones my younger son hit well before my older one. It still happens, the problem is that now my older son recognizes the differences in their abilities. <br />
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I'm sorry, I went way off track here.....<br />
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Bottom line....<br />
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D.....you are a special woman, and thank you for helping our kids....

Mom....he's differently abled. He's learning to communicate differently than you and I......let me tell you, getting here was not a cake walk. Yes, I'm lucky because he was somewhat verbal from about age 4 on.....that didn't mean that he understood using words would help him to communicate his wants, needs, desires.....what I found was that I had to stop listening for him to communicate in the way I wanted...words, pointing etc. He had his own form of communication, and once I learned it, life became much easier.<br />
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There is an ability in your son that you don't recognize yet....but you will if you keep your eyes open...and instead of looking IN the box....check around it, under it....even 100 yards away from it, you'll find what you need.<br />
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It's a hard road our kids and ourselves travel....my guy was suicidal for years...that's a scary thing...when a child in general is suicidal, it's horrible, add the way our kids look at the world to the mix and it ignites pure terror.<br />
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But, still maintain, that it's us and our drive to make our kids conform to societal that hurts them most.

Maisie, I have the autism awareness magnet on my car....and I truly believe that being aware is the first step in helping our kids. <br />
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I'm all for a "cure" whatever that is, and all the talk within the community about finding the 'cause' to me is missing the boat. <br />
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Give our kids, and the rest of society the tools needed to help live our day to day lives....then try to solve world peace.

I hope that someday I can feel like you do, IWM. I mean, I'm beyond trying to "cure" my son. I do accept the autism. I would for sure at this point say my son has a disability. A pretty severe one. He's pretty much completely nonverbal and can't always let me know what he wants. We are using a voice output device and hopefully that will help out. Only the future will tell what he will and will not be capable of in the future. I hope one day to be able to feel like he is just a bit different then most, marching to the beat of his own drummer. For now...he is about as different from a typical 7 year old as he could possibly get.

I have two sons......and wouldn't trade them for anything in the world....it's funny, I never "wanted" a daughter....I had not idea what to "do" with a girl and I guess the Universe knew that since it sent me only boys.<br />
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As for your cousin, that's is a huge accomplishment, he sounds very special indeed.

I have a cousin with autism....brilliant guy...just not able to learn the same way we do...never held him back, though...even when he was told no to his dream of becoming a priest...now he is a special needs teacher...for the high functioning people with autism, the perspective they bring does tend to remind us how distracted we "normies" can get....for those who cannot get out of their heads at all, that would be hell...your son sounds amazing...I, too, have a 16 year old son...he is amazing...I have no favorites among my children, but I must say that I really love our relationship...we are very close....I adore his humor, his kindness, his wit, his genuine affection for those he loves, the way he sees the world...sons are a wonderful gift....SS

you have more insight than 99% of the people i know...thanks for your comment and for really seeing your nephew as he should be seen

couldn't agree more i have a 13 yr old nephew who is autistic. he is VERY smart about things that interest him the kid started band last year and can play at least 4 instruments. his only problem is the interaction with others you know how cruel kids can be and the kids at his school are constantly calling him retarded (i wonder how many of them can play 4 instruments LOL) he is a great kid

Thank you. It's a long and difficult road, but it's neither good nor bad. Just different.<br />
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You'll also find that as your son grows, you will learn to appreciate the small accomplishments so much more that if he were nt. Just for the fact that you understand most things don't come naturally.

I have to agree, though my son is only four, I also do not see autism as a disability. I say this to people and they think I am delusional - I know it is *classed* as a disability but from living day to day raising my son, I know he is *able* to do anything he wants, not disabled. Like your son says, they just do things differently! Wonderfully put, I applaud you and your son.