This topic keeps coming up recently and it’s bugging me. Why, you ask?
Okay, this is my take on this:
ASD is a disability.
It is a developmental disability. I do not see it as a lifestyle. I do not see the condition as a gift. I see it as a disability that may allow some to do extraordinary things at times partially because of our issues with perseveration and extreme focus on particular things.
I have Asperger Syndrome.
I think there is a difference between someone accepting a diagnosis and having a positive attitude about it and not letting it define them but finding ways to grow and cope and someone stating that Autism Spectrum Disorder is merely a gift or a choice (lifestyle). It makes me think of how silly it would sound to call “poor vision” a gift simply because it might improve their hearing.
I find it almost offensive when people call it a gift because I personally feel like it belittles all of the hard work I do on a daily basis to co-exist with neurotypical people. I can see how one might get confused but just the fact that I have Asperger Syndrome does not mean I am some sort of genius or able to do amazing things.
This is not a debate on whether or not I want a cure for myself or anyone else. I don’t even feel educated enough to answer that because I don’t know what a cure would mean for someone like me and I cannot and would not try to speak for someone else. Not my place. But I digress…
Why is it assumed that if a person calls ASD a disability that the person is then a pessimist? I see it as a challenge for me to deal with and adapt to every day. Or is it that people see Autistic Disorder as a disability and Asperger Syndrome a gift?
That seems like ignorance to me.
We cannot have a community without unity and an advocacy community that stands divided between parents and adults on the Spectrum is only holding us back from supporting each other by listening. We may not be able to relate to everything each other shares but that’s just diversity and I would prefer diversity over adversity in our community any day of the week.
Can we see beyond the politics and our pride? Can we just be there for each other? Shouldn’t we be the last community to be judgmental of others? Alienating others? Can we stop long enough to listen? I don’t want to preach, I just want our community back. Here, I’ll start. For those of you who want to share…
What is your story? I’m listening.
Please do not turn the comment section into a political debate.
Gretchen Venters 
I agree with you!
I’m a parent of a 15-year-old with (moderate) ASD as well as a self-diagnosed aspie. I’ve learned the most from individuals on the spectrum rather than the “professionals.” And I surely haven’t fit in the parent support groups I’ve tried.
I feel like we all have something to offer each other in our community even if all we can offer at times is listening just so we are all heard. 😉
Hi again Carrie! What is your take with a double perspective on how we can be more unified?
I think it’s a difficult thing to do, and I don’t have a specific plan. Part of the trouble with unification where families/young children are involved is where the parents are on their journey.
Many parents of toddlers-young kids are just barely getting by day-to-day with their own sanity. They don’t want to focus on what growing-up with or adult autism looks like because they are under emotional stress from potty training or behavior issues that make it hard for them to do more than collapse at the end of the day. When parents are in this survival mode, it can be too emotionally draining to think beyond the day/week/month.
The parents of kids about 8 years and younger have different needs and than of older kids. Those parents with younger kids would benefit from hearing from people on the spectrum about what therapies/living conditions/calming ideas would be helpful for their kids right now. But most in that group aren’t ready to face what adulthood, or even teen years, on the spectrum looks like.
So, I guess my perspective is tailor the message for the audience, which isn’t new. 🙂
Gretchen I really admire your courage in writing this post and the way your writing hits so many of the nuances and subtleties of this issue. The problem with diagnosis in general is that so many people use it to fully define themselves and others. I love the way the ASD community has been able to come together and connect with the unifying experience of their diagnosis as the focal point. But ASD – regardless of what you call it – is far from being the one defining feature of anyone I’ve ever met.
I also like the tone you take. It’s not accusatory or defensive but you make your case with compassion and confidence. Great post!
Thank-you! I’m glad the tone came across the right way. I don’t want to judge anyone, I just want us to stop splitting into separate groups, ya know? We need each other even if we don’t all agree on everything or haven’t had the exact same experiences. We can still offer support 🙂
What is your take on how we can strengthen the community?
Hmmm….that’s a good question. First off, in the interest of full disclosure, my involvement in the community stems from being a counselor. I don’t have an ASD although I’m certainly on the ADHD side of things. I’m only saying that because I think that most of the questions about community are probably best determined by folks on the spectrum.
To be honest, I think the ASD community is a very strong one already. I’m in the Boston area and I think the job that the Asperger Association of New England and others have done in bringing people together has been magnificent.
I think at this point, the threat to the community you were writing about stems at least in part from one of the hallmarks of ASD – that is the tendency to see things in very black and white terms. So, for people whose view is that ASD is a difference rather than a disorder or deficit, the opposing view is just wrong and – for some – immoral. The same can happen looking at it the other way.
I think the best way to strengthen the community is for people who are actively involved in it to take the view that you took in this piece. Kind of a variation on the old Rodney King “Can’t we all just get along?” theme. There needs to be a more far reaching understanding of the notion that in the realm of mental health in general and ASD in particular, there are not a lot of absolute right or wrong answers. Lots of room for nuance and shades of grey. That’s why I liked your piece so much.
I am 56 years old and found out I was Aspie-Autistic just last year. My personality makes me have traits not related to Aspergers-Autism. My personality affects how my Aspergers-Autistic traits present themselves. As a pervasive development condition/disorder how could it not be part of who I am? Not all of who I am but a large part it.
I look at at my Aspergers-Autism as part difference that does not need to be changed and part true disorder. My preference for focusing on one topic, literal thinking, dislike of small talk are differences. They do cause me in some ways to not function well in society but this is only because I am minority and the neuromajority just doesn’t understand or fears me because they are not used to the way I think and act not because I am wrong or these traits mean I am disordered. My executive functioning deficits such as poor at multitasking, poor ability to plan and organize is truly disabling. Severe hyper sensitivity is truly disabling for many on the spectrum. This Autism is a complicated business.
Acting/coping to present as neuromajority is something I have do to survive. It is also something I do because I want to be nice to somebody I like. From now I will only do it for those situations. Never ever again will I do it because the society or myself thinks my Autistic traits are wrong or defective. Acting is exhausting, Not being yourself 24 hours 7 days a week is bad for you. Thinking you are wrong is also bad for you. This leads to depression, breakdown and burnout. When I do something “normal” that I did not used to do sometimes I am not sure if it is a skill I learned or acting and thus faking out myself. The cause of this disassociation was trying to act (and failing a lot) to be “normal” for decades.
I think a helpful book for me as an NT was to read the book, Far From the Tree by Andrew Solomon. It’s a 400+ page tome in which the author digs deep into communities connected by their common difference from the “norm,” I found fascinating how the deaf community is incredibly divisive over whether children should have cochlear implants, whether children raised deaf should be taught sign language or lip reading, and even whether deaf children should be raised by hearing or deaf parents. To some, deafness is viewed as a disability to be corrected, and to others it is an identity and something that makes them feel connected to a larger community. Reading Far From the Tree, you notice similar divides and perspectives within many of the different communities profiled.
Gretchen,
Thank you so much for this post. It is so helpful to hear what someone thinks who is actually living this everyday. My son is 4 and has autism. We are working hard and doing all we can to recover him but I have had people call me reprehensible for wanting to change him. I simply want to give my child the best quality of life he can possibly have. I love him regardless of what he can or cannot do but hate to see him struggle. I appreciate hearing your thoughts on this.
Hi Natalie! Absolutely. I would love to hear your own take on how we can grow as a community?
As somebody who has been an Autistic person for over 5 decades self esteem is important as it is with all humans. To a literal thinkers as Autistic people are words are very important. Positive words and Positive attitudes are better then negative words and negative attitudes. Saying somebody needs recovering is a negative, your son has not been abducted by some cult. The word “change” can be bad or good depending on the context. Saying I want to change a person implies he is defective. Nobody wants to be thought of as defective. And I don’t believe you think of him that way.
There is a lot you can do for him You have a family member that was born a certain way. You can build on that by teaching him skills such as social skills and how body language works. That is a positive attitude approach. You can modify his behavior so that he appears “normal” . I can tell you from experience I have “appeared” normal plenty of times. A lot of those times I was doing it so people would stop bothering me about my “weird” behaviors and other times I was doing it to please people. Adjusting oneself to please people is a good thing. Constantly doing that at the expense oneself because you think you are defective is a bad thing.
I’m a little confused as I do not have a son, not a parent. But as a person with ASD I just get confused with where “Autistic Pride” comes from. I feel proud that I can deal on a daily basis but I her stuck on how to be proud of my disability. But we all see things different ways.
I was replying to Natalie
Sorry, this app does not show who a comment is directed at. However, please remember to be respectful to other commenters as someone else said, we are only experts on themselves.
The cure vs. no cure argument is a heated one and prob not one we should be discussing on this thread. It’s a very personal conviction we each have and naturally we will all think we are right.
This post is about unity. She is being non-confrontational, let’s all just try to respect everyone’s views here.
Sound fair? 🙂
Reply to Gretchen Leary: I have not seen me or Natalie write anything about a cure. I am discussing why positive words and approach are better for helping autistic people then negative words and approach. Yes I thought some of her words were negative but I did not name call, I tried to use my experiences explain why I thought they were negative. That is constructive criticism not confrontation.
It’s your blog, If you want me out of here I will respect that . But if she wants to I would like to here Natalie’s thoughts
Okay, no need to go. Was just trying to prevent confrontation. That’s all.
Thanks
I am autistic, and I view it as a disability, or at least *not* as a “gift” or a choice. However, I also see it as my identity, much in the same way Deaf (capital D) people view their disability as their identity. Obviously not all autistic people are alike. We all have our own personalities, preferences, interests, etc, but I don’t see claiming the autistic label as my identity to define any of those things. Instead, it defines how my individual personality, preferences, and interests have developed over time, and how they continue to evolve. I do not have frizzy hair because I am autistic, and while my hair might seem like a silly example it is definitely a part of me in a literal way. But the way I brush my hair, stim with my hair, wash my hair, put my hair up…this is all dictated by my autism – by my sensory, social, and compulsive needs and likes and comforts. It is impossible to separate me from my autism. That doesn’t mean it’s a gift. That doesn’t mean it’s not a disability. That means it’s me. Wholly and completely.
I can definitely understand where you are coming from. Thank-you for sharing your perspective. I also feel similarly in the regard that it is part of who we are but I don’t see it as wholly who I am as a person. I have some personality traits that actually make people surprised that I have ASD (on top of hiding my sensory issues to the best of my ability and how I have learned to mimic some social skills).
I think my concern involves the concept of “autistic pride”…because even though I think we should be confident, I struggle to understand why we should to be proud to have this disability and I think it would lessen NTs from recognizing that we do need services and we go struggle.
For example, I highly doubt that Paralympic athletes, are proud of their disabilities BUT they are proud of how far they’ve come and what they are able to do despite their disability.
What’s your take on “Autistic Pride”?
I’m very proud of being autistic, and Autistic Pride is important to me. When you think of autism as an identity to embrace and one that is not the norm – one that comes with both positives and negatives, both talents and struggles – autistic pride is similar to gay pride, women’s pride, Deaf pride, or national pride. When I say I am proud of being autistic, and when I embrace Autistic Pride, I am not saying I do not struggle daily. I am saying “I am proud of who I am, and who I am is autistic.” I despise parts of me that come from being autistic, but I love me as a whole, and that includes those parts.
Also, you mention that you have personality traits that make people surprised you are autistic. I am very familiar with that. People often use some of my personality traits that are most important to me as ways of saying, “You can’t be autistic! You’re so _____!” At first, I used this as sound evidence for being neurotypical, but as I came to relate stronger and stronger to my diagnosis and feel comfortable with it defining me, I saw that many, most, or all or the words people used to fill in that blank were actually direct results of being autistic, or indirectly resulting from it if they had more to do with growing up undiagnosed, and needing to hide my true self and adopt silent or easily hidden coping strategies.
Love your post. I think this question has no single answer, because the spectrum is so enormous. For many people, it’s a disability, plain and simple. For many others, it’s a gift. I think the trick is to believe people when they tell you their lives are hard, and to validate their experience. We are only experts on our own lives.
It seems especially silly to think that autism or Aspergers is a “lifestyle choice.” That would mean that little children at two years old are “choosing” this “lifestyle!” To me, I recognize it as a disability. A lot of people who DON’T have disabilities argue about it with me… it is almost as if they assume having a disability is a horrible thing, and they don’t want me to think of myself that way. But it is not a horrible thing. It is just a thing that I live with and deal with. Sometimes it has positive parts, and other times it sucks, but mostly it is just the only life I know.
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I really appreciate your point of view! I am a parent of a 9 year old who has autism. I’ve been an advocate of the “not a disability” point of view. It’s not because I have any intention of minimizing the challenges that he, or anyone else, faces. Rather, those challenges are so obvious that I want to point out that there’s more to the picture than a list of “can’t-dos” I want my son to know that, even though there are a lot of things that are terribly hard for him and he has to fight every day for things that other people take for granted, he doesn’t ever have to let anyone tell him he can’t do or be something just because he has autism. He is more than his challenges. And, in a world full of people who believe there’s something wrong with him, I don’t want him to forget that he is different but not flawed.
I wouldn’t call it a gift – he might. But I think it’s OK for people to decide for themselves how they feel about it, and I hope that when my son is old enough to speak for himself, he does so with as much courage and elegance as you have!
Reply to Angela: “Rather, those challenges are so obvious that I want to point out that there’s more to the picture than a list of “can’t-dos” ” While I am heavily in the “not a disability” camp I have not thought of it in that way. Very perceptive. Thanks
Well, I do think this “condition” is a gift and not a disability. I am highly intelligent. I understand so much that others around me can not begin to comprehend and I pick up and switch on to new abilities quickly, sometimes. Yes there are other areas which confound me, initially or still and those skills and abilities might take me longer to develop or attain. But who can not say the same about some skills that they might have difficulty in obtaining ? How many of us humans can say the converse though, that so many areas are strengths which come to us effortlessly ? That is the gift of Asperger’s.
Has this condition impacted me adversely? Definitively.
I.Significant Developmental Delays
I could not talk until I was 5 years old.I could not read until I was nine years old. I could not swim until I was 13 years old. I could not open a deadbolt lock until I was 19 years old. I could not comprehend parallel parking until I was 24 years old. But that does not mean that I did not catch up to chronological peers. I surpassed them. , usually.
II. Broken Heart Syndrome
We aspies tend to be rule bound and just, equitable and compassionate. We are easily willing to find the best in others and how often are we let down? How many times I have had my trust betrayed and not seen the petty nature that some are capable of? That is the worst impact. I have been bullied and emotionally traumatised and took this too much to heart . It is easy for me to stand up for another but I have neglected to stand up for myself , in this life, too often.
Has this condition advantaged me profoundly? Most certainly.
I. ethically, compassionately
II. lexicon, vocabulary, articulation
III. learning quickly from printed text
IV. adapting to new technology
V. applying new abilties
VI. metacognition
VII. extrapolation
I have 7.5 years of tertiary education resulting in several degrees and numerous graduate certificates. During my graduate school I had a 4.0 gpa.
When it took me longer to learn something, it did. But I often found myself the top of the class , the best and without peers, at the conclusion of my study.
I do not think that neurotypical people are advantaged by being so. I truly believe that the mind and the consciousness of humanity is evolving and this explosion of high functioning autism is part of that evolution.
I found a husband who is like me though he is not autistic. But there is something that is not neurotypical therein. He is not afraid to speak in multisyllabic communication and he is proud of his education and he enjoys learning and reading daily.We have been married since 1978. I don’t recognise this impact on intimacy, at all. But, I can see that this condition has impacted upon my sons much more adversely than upon me. I begin to consider that women deal with this better and that many females remain undiagnosed.
We have seven children, two are adopted. Two of the 3 biological boys have Asperger’s Syndrome. Both of the girls have traits which suggest Asperger’s Syndrome, too.
We are grandparents to ten grandchildren, three of the four biological grandchildren have high functioning Autism.
Yes , life is different for us. But whom is life not different for? Who is this “normal” person? I have not met them yet. Embrace whomever you are and live life to the fullest , there is no way to become someone else , so you might as well enjoy the ‘self’ out of you.
Reply to Catherine Lee Hilderbrand Curran: “It is easy for me to stand up for another but I have neglected to stand up for myself , in this life, too often. ”
While I only have one degree and do not feel like I am part of the next step in evolution I very much relate to the statement quoted
Reblogged this on 61chrissterry.
An interesting view on the idea of disability; one I had considered for a moment before deciding I could not call it either gift or disability. It just is. Just as I have brown/grey hair, greyish eyes and a laugh others make fun of. My ASD is disabling at times. It gas given me gifts too. But it is neither of those, yet it is. I just prefer no judgement of what I am. I just am.