Parenting an Autistic Child

One of the most difficult things about being a parent to an Autistic child is the realization that almost everyone we parents come into contact with, when getting the diagnosis, have ideas about autism and what that means for our child, regardless if their ideas are based in fact.  So many people have theories and opinions about what autism is or isn’t.  There are endless charts and check lists meant to be helpful, yet they are all skewed and written from the point of view of a non autistic person or someone who uses spoken language to communicate.

Once you begin the evaluation process you are asked hundreds of questions.  Questions such as, “How many words does your child know?”  We answer these questions to the best of our ability and from the perspective that “knowing” means “speaking”.  Zero, or maybe five, ten, oh perhaps twenty, we say with wavering confidence and this answer is then noted.  “Does your child show interest in others?”  “Does your child engage in imaginative play?” We are asked.  And again, we do our best to answer honestly from what we’ve witnessed or believe we know.

But if we use spoken language, we answer these questions from the perspective of one who speaks, not from the perspective of one who does not.   The idea that someone might be unable to speak, but knows a massive amount and can learn to write to communicate or someone might have a difficult time translating words, whether written or spoken to match their non word thinking, is never brought up. As parents, we do not hear this idea voiced and yet it is crucial to our understanding of our child.  How different we might feel and understand our child if we were told that this may be our child’s experience of the world.  We could be told about the body/mind disconnect and how that might manifest itself.  We could be given the words of non-speaking children, teenagers and adults to help us understand.  Why are parents not being informed of this?

Instead your child is observed, notes are made and a diagnosis is given.  We parents are left with a word, laden with opinions, ideas, but few facts.  People talk about the “science” behind various “treatments” and we are told that the only scientifically proven method is x.  We are told that we must hurry as the window to help our child is quickly closing.  We rush ahead, madly, blindly, we do as we are told.  There’s no time to wait, to find other opinions, we must hurry, hurry.  We feel the guilt and the horror of not doing enough.  We must engage our child in a specific way.  We must urge them to complete puzzles and force them to play with dolls or farm animals, we give them treats so that they’ll comply, we buy play kitchens and a variety of toys and when they finally show an interest in one, we watch to be sure they don’t show too much interest.  Too much interest is a red flag, we are told.

When things do not feel right to us, we begin to do more research, looking for answers and we begin to form our own opinions about what’s really going on.  But for many of us we just feel terror and confusion.  Well meaning people give us advice.  We are sent links and the names of specialists.  Suddenly, many of us are deeply immersed in that surreal world of “alternative” medicine.  Each person we see speaks with the authoritative voice of someone who knows, who understands, who is convinced this will make our child “better”.  Yet few question what that word means.  What is “better” and what does “better” look like for my child?

The sinking feeling that something is terribly “wrong” embeds itself into every fiber of your being. Almost everything you read about autism confirms that sinking feeling.  This is a terrible thing that has happened.  It makes sense that  to you and your family, the focus is on “righting” what is wrong with your child.  A child whose life would be so much easier were they neurologically like the majority of the world.  But they are not neurologically like the rest of the world.   This one fact is overlooked as we continue to pursue all that we are told and advised to do.

How do we conceive of something we do not understand?  How do we see something we’ve not heard of or ever believed possible?  How can we understand a neurology that is so different from our own?  Autism.  What does that mean?  What does it mean for my child?  How do we support our children so that they flourish?  How do we best raise an intensely sensitive being who does not necessarily use words to think?  These are the questions I would like to hear educators, doctors and all those who feel they are experts answer.

The things that are being said, all those recommended check lists and the questions asked by all those autism organizations and experts are encouraging us to teach our children that they are the problem.   We are raising a population of children who are internalizing the awful message given to them…  Our children, who will grow up to be Autistic adults, are getting this message from almost everyone they come into contact with from the moment they are given the diagnosis.  It is a message that is hurting our children and hurts all Autistic people.  Our children, whatever their neurology hear it,and those who have internalized it may go on to deliver it too.  It is up to us to change the message.

Ask a parent what they want most for their children and most will say, “Happiness.”  Yet so much of what we are told about autism and our Autistic children is ensuring the opposite outcome.

"I don't want to talk about it!"  ~ One of Emma's favorite spoken comments

55 responses to “Parenting an Autistic Child

  1. So true. Autistic people are the real experts.

    • This is why I take with other people say on support site like a grain of salt. I ask what other older children or adults WITH autism think, feel and want to do. I ask what kinds of therapies they had and how they feel about them. I ask how their lives are and are THEY happy. Than I ask the Adult Autisic peoples parents what they think worked and what they think was a failure. What is working now? I get my information from the source.

  2. Permission to reblog? on tagalogblog.com

  3. I feel sick. You are so very right. I feel like I try to fight for our civil rights as neurodiverse people (my son and I) and yet I Do DO some of these things. i have internalized the message and passed it on to my son. Thank you and Emma for this brilliant, incredibly impactful post. I have the words to write this response, but i would not have them to discuss it…and that is alright. It feels very safe in the space you have created here – and I feel the strength coming on to stand back up and really listen to and follow up on what you have written…
    With love and gratitude,

    • I once spread this message very publicly and widely before I knew differently. I pursued all kinds of so called treatments in the name of helping my daughter. You already know this about me, I know, but I wanted to remind you so you don’t feel you are alone in feeling regret.
      It is far more common to internalize what we are raised to believe than not.
      Sending you hugs and love.

  4. Reblogged this on TAG and commented:
    On the heels of Ray Hemachandra’s stunning essay on the damage done by caregivers and experts, here, comes Ariane Zurcher’s terrific writing on a similar theme on her own blog, Emma’s Hope Book. Ariane writes: How do we conceive of something we do not understand? How do we see something we’ve not heard of or ever believed possible? How can we understand a neurology that is so different from our own? Autism. What does that mean? What does it mean for my child? How do we support our children so that they flourish? How do we best raise an intensely sensitive being who does not necessarily use words to think? These are the questions I would like to hear educators, doctors and all those who feel they are experts answer. The things that are being said, all those recommended check lists and the questions asked by all those autism organizations and experts are encouraging us to teach our children that they are the problem.

  5. Thank you for this Ariane 🙂

  6. Hi there Ariane!

    Always glad to see your blog posts. I wrote this in response to your Theory of Mind article which is closed to comments. I wanted to make sure you saw it. http://gretchenleary.wordpress.com/2014/07/16/lets-talk-about-empathy-autism-aspergers/

    • Thank you so much Gretchen for alerting me, just read and commented. I loved reading your experience about feeling intense empathy. I just have to say, it made me sad that you and so many other people have been put into the position of doubting your own feelings of empathy because the message given about autism and Autistic people is that they lack it.

      It is also really troubling because again, like so much about autism and therefore Autistic people, what is being said by those whose opinions reach massive numbers of people, completely ignores the experiences of a group of people, including many who cannot speak in protest, yet the assumptions hold and their personal experiences such as yours are not seen or heard. I will be sharing.

  7. Could not agree more! When my son was younger his facination (perseveration as the experts like to call it) was with trains, any and all trains. I found no harm in this while the so called experts would say differently. Over time this facination has moved on to other things, now it’s Minecraft and video gaming. But if you were to ask him he would still tell you he wants to be a train engineer. My son knows his mind, he knows what he wants and while I have to often help with the social aspects of life and I try to steer him clear of trouble, I follow his lead.

    • usethebrainsgodgiveyou

      Ben, 20, still loves trains. We were told not to allow this obsession. That just seemed cruel. He is 20, and has volunteered for a train museum the last 5 years. They kid they are going to fix up a caboose and let him live there…still, he has taken tech classes in welding, electronics, and currently machining. He is going to join a Maker’s Club….where they have a lathe, and create a 1/12 model of a PS4 (train @smithsonian, the green one he saw about 10 years ago) and use it to show future employers his skills….exactly as Temple Grandin suggested, although he came up with it himself. When I was learning to teach Special Ed 30 years ago, it is not just “autistics” who obsess on specific interests, but all of the “creatives” or hands on people. Because we chose to encourage his love of trains…good things are happening. He has met an inventor, who himself was dyslexic, who came up with the Nerf Super Soaker. You know, the one that holds about a half gallon of water? He encouraged him to be a “doer”, not a “thinker”. It has been a magic, interesting life!! Ben has the gifts of an autistic, and a dyslexic. How lucky can you get?

  8. Thanks for sharing your beautiful insights. I never felt that my daughter had a “problem” it was hard for us to face that something might be “wrong” with her becasue she is going to be three years old in a month and still has no words. She talks all the time though and makes sounds and hums melodies. It is hard for us these days going for all of these assessments. To us, she is just herself and not really flawed. Nothing is “wrong” about her, she is just who she is. It is hard for me to take her to the doctors and have them make it out to be that she is not “normal”. Thank you for your blog and the light that you share. 🙂

    • Tiffany – thank you for reaching out. Do not believe anyone who suggests they know what the future holds for your two, almost three year old child! She has an entire lifetime ahead of her and hopefully she will not have to spend years of it trying to prove all she knows to any who believe she does not. She’s already ahead by having a parent like yourself.

  9. This is why a small group of “old” Autistics [some with Autistic children] are working together on various programs to effect change. Star Ford [ author of “A field Guide to Earthlings”] has bought some property in NM, where she is building a retreat center built and run entirely by Autistics . My son recently returned from a work camp there. There were supposed to be two more this summer, but some problems with funding, and a bigger problem with finding people willing to donate their time and sweat has slowed the process down.

    In February,I organized the first ever By and for Autistic retreat where we made sure that anyone could attend, no matter their their financial status [most adult Autistics are on SSI-another thing we hope to change- and cannot afford any money for anything, let alone a retreat] Once again, funding is a problem, but not as big a problem as getting my Autistic brothers and sisters to commit to attend.

    We are planning an Autistic community within an already existing community in Pueblo Colorado [ sounds like a crazy location, but I really believe, for a number of reasons that it is the ideal place] Self-funding is how we hope to put it together. Many Autistics are interested, but not until 7 years or so, after it is already established.

    Our biggest problem with these projects is getting other adult Autistics together to work on these [and other] projects. And getting parents of kids involved. Biggest problem with that is that there is so much animosity between so many adult Autistics and parents who have Autistic children. It gets me SO upset. Because, when we can do that,[and not until we can do that] we can change the world for our kids.

    • So great to hear about these programs Vicky! Have any links?

    • I was interested in Ocate, but was told I couldn’t bring a travel trailer. I need my own space to retreat to and take care of my complicated medical needs, so I said I wish the project well but can’t be involved. If we want more projects for adult Autistics, we have to remember that we are talking about people with a very diverse set of needs to accommodate. I can only go where I am allowed to bring my accommodations with me.

      • I’m really sorry to hear of this, Sparrow. I hope they will reconsider their rules.

      • We wanted to bring a travel trailer as well-same reasons, medical- and since we were not allowed, we merely dropped off and picked up. The reason for the ban on travel trailers at this point is because it would be pretty impossible to get one up those roads until they’ve been worked on a little more.I wonder if there would be a way to park a trailer at the base of the mountain and just drive up every morning. I’ll talk to Star about that. But we still need so much more. Fund raisers, Finding volunteers to work up there. And to work on projects that are springing from it, which I can tell you some about if you let me know. Plus, we will be discussing all sorts of projects at Authaven [in colorado] the third week of next March. It is only $150 for all 4 nights [shared rooms] and last year we were able to reduce that rate [some came at no charge] because of some donations.
        I am old and I’m being treated for cancer. I speak with the younger ones working for change [wish there were more, getting young adult Autistics involved is hard] and I tell them that I am envious that they will mostly all still be around in 50 years when children are approaching their parents with a sad look and asking “Mommy, Daddy, Why didn’t you make ME autistic?” People laugh when I say that, but I am mostly serious.
        They

        • Ah, thank you for the clarification, Vicky. I wasn’t told that reason, so I felt like I was getting a brush off or was being told “secret social code” for not being the kind of person who was wanted there. So much of my life, I have not been wanted and was given the “secret code words” that were supposed to let me know, but because I didn’t understand the code, I went anyway and then was treated abusively by people who hadn’t wanted me to be there. Over the years, a few people would say, “why did you come when we didn’t want you?” And I would explain that I hadn’t realized and they would say, “we TOLD you [coded thing they had said].” Some codes I learned to recognize, others I didn’t, so now I am always watching for the codes to tell me I am not wanted. And along the way, I also learned that “maybe” means “no” and “we’ll see” means “no” and “we should get together sometime” means “no.” So when I got a weird answer about why I couldn’t come in a trailer and it made no sense to me, I assumed it was a code for “we don’t want you.”

          Thank you for explaining with an answer that makes sense and lets me know that it wasn’t a code, it just wasn’t explained clearly.

  10. Divergentlabs.org should lead you to all of them.

  11. Thank you for sharing your experiences, so helpful to me. I am quite new to this world – both autism and blogging! I just wrote about the pure beauty of my son today as he hugged a big plastic bird on the street : ) and how I have just recently started to accept rather than fight. Deeeeeeeeeppppp breath. There was something really powerfully attractive to us to try cure something that was wrong with him. Action helped our grief. I believe some things have helped but I know now nothing will cure. It is particularly hard with autism I think, especially regressive autism as my son had as you really don’t know – where it is headed, what it is, what to do or how to help and why it has happened. There is a lot there to fuel parental guilt, a lot to fuel anxiety and out of anxiety I tend to overdo things!

    I am always reminded of a saying… when you don’t know what to do don’t do anything. Fighting for my son is a story I still feel so compelled to buy into. Maybe it does not have to be like that?

    • Thanks for commenting. What you’ve written is pretty much exactly what I once felt. It was such a confusing and difficult time. Accepting my child, realizing all that I’d been told was incorrect, finding and listening to what Autistic people are saying about their experience of being Autistic and how that so vastly differs from the dire and often, truly horrifying things we were being told, changed everything.
      Presuming competence has been critical and then finding that my daughter not only knew a tremendous amount and has understood everything being said within hearing distance, but also is now typing and telling us how wrong the information given and assumed true is, has not only changed how we think of her, but has changed how we think of the world and all its inhabitants.

      • Thanks Ariane there’s a lot of opinions and judgements in this world and it’s amped up on this particular journey- it’s hard to figure out what is a good thing to do for our loved ones.

        In the end I think we are all a crazy bunch of humans but lovable all of us. It can be a hard lonely journey for everyone. Made harder by the stories we tell and are told. I will keep open and keep visiting and listening : )

  12. Also, if you go to Ocate Cliffs on facebook, there is a video of Autistic people working on building the retreat. The shaggy haired young man? That is my 20 year old youngest child, LJ.

    We found out about Ocate Cliffs and Rhizome, when Star and one of her daughters attended AutHaven this past February.[ next AutHaven is next March.] Except when I am in “the zone” I have trouble with my words. If you get in touch with her, she can tell you so much more than you can even find on the site.

  13. Beth O'Callaghan-Guinn

    I am just beginning this journey. So unsure about everything that will need to be done, or what I should do differently. Thanks for writing this. It reminds me that my focus for him should be happiness, not a push to make him seem normal.

    • Beth, it sounds like you are already thinking pretty clearly about this. Reading what Autistic people are writing has been absolutely critical for my understanding. If you aren’t sure where to look, check out the resources page of this blog. It’s an extensive list of Autistic bloggers beginning with those who do not use speech to communicate.

  14. So true.

  15. Gross generalizations of a complex situation – that is what you are railing against, and I support that wholeheartedly. Many make assumptions and generalize them to all of a particular population. My fear is, however, that you are doing exactly that. I am a clinician, a specialist in autism. AND a parent, which came after. And you have so much of value to say. But when you speak with such assurance and absoluteness about things you only know from the surface, you recreate the same culture on a different side of the fence. As if we’re on different sides. And we aren’t. I work with the most wonderful clinicians. I have incredible colleagues. We all have a particular affinity for kids on the spectrum, and we DO appreciate who they are, more than anyone but each other knows. I am sorry for the clinical relationships you have found yourselves in, all of you. But this is not an absolute. Does there need to be a paradigm shift in general? YES. But you leave a clinician such as myself (again, also a parent) feeling attacked and deepen the gap between us all, while gaining converts to a similar perspective, almost as if in preparation for a fight. But believe it or not, we are all on the same side. And there are parents on the spectrum with kids on the spectrum who can probably offer a whole different perspective. It is about taking other people’s perspectives. All of them. And seeing that your experience, while not uncommon, is not the only one.

    Thank you.
    K

    • This is a quote written by an Autistic person who commented on another post on this blog the following:

      “I’ve seen and known good ABA-based therapists (note to others: “ABA” refers to a subfield of psychology on which many different therapies are based, from Lovaas-style DDT to Floortime), ones who connect with their clients, respect them, and help them build useful skills. I’ve known children who look forward eagerly to their therapy sessions. No argument there.

      “And I’ve read innumerable stories by people who were damaged by those therapies, people who may never recover from the emotional trauma. I’ve seen, firsthand, a child suffering through a session of therapy that used all the right buzz-words, doesn’t use aversives, and generally sounds like a good program… but didn’t understand the first thing about respecting this child’s needs. The child’s mother thinks this program is great. I think it’s horrific.

      “Here’s the thing, and I don’t mean this cruelly, but: get over yourselves.

      “You do ABA therapy the right way? Good for you. But that’s not enough.

      “You don’t like that some people consider ABA categorically abusive? Big deal. You’re not the ones who are at risk of ever being abused.

      “Instead of complaining when someone lumps you in with the abusive stuff, you should be out there fighting to change the field of ABA. You should be seeking out the abusive programs and reporting them to ethics committees. You should be warning every parent and teacher you meet about what to watch our for to help them protect their children from the many, many therapists and programs that will damage them. You should be writing letters to the editors of research magazines. You should be protesting Autism Speaks when they support abusive therapies. You want to be angry at something?

      “Until you’re doing all that and more, I frankly don’t care that your feelings get hurt by posts like this. Don’t be angry that so many people consider “ABA” synonymous with “abuse” — be angry that they have good reason to make that mistake, that so many traumatic, hurtful, and disrespectful programs even exist. Start fighting the right fight and putting your energy where it’s needed.

      “If you care about autistic people, at all, do more to make their world better and safer. Because, while there are still children –and adults– being abused by therapies that go under the name of ABA, you should be more worried about /their/ wellbeing than about what someone thinks of you or your job.”

      I urge you to read what non-speaking Autistic people are writing, because my daughter is not an anomaly as you suggested in a comment you made to my husband. We personally know and have met a great many people her age, younger, and older, and all have profound insights. One such person is Ido Kedar. Do you know of him? He wrote a book, Ido in Autismland – http://www.amazon.com/Ido-Autismland-Climbing-Autisms-Silent/dp/0988324709

      • I apologize for my inarticulate nature. Perhaps the gist of what I’m trying to say is, you – and/or Emma through you – have such wonderful insights to offer the wider community; including myself, which is what drew me to this site. Abuse, stupidity, and just plain ignorance run rampant in this world. We all benefit from seeing that we do not have the full picture, or the only answer. That’s what your site brings me. Things that are not in my picture – my hundreds of non-verbal children for whom I doggedly demand a method of communication. My hundreds of non-verbal children who do not have the cognitive capacity to communicate with words of any kind, and my few dozen or so who finally learn some non-verbal or sometimes written means. I envy you the opportunity to communicate verbally with your daughter. That is a gift that most of “my” parents never have. No, Emma is not an anomaly. That was not my point, and I apologize if it came off that way. She is not, however, ordinary. Nor are the great many non-speaking yet communicating individuals with autism you know; all of whom are a treasure of insight. As with your GI doc, “I don’t know the answer.”

        • Kd – My daughter does not communicate and has never been able to communicate through spoken language, however she is now, within the last ten months doing so through typing. What we are seeing is that many, many kids who do not communicate through spoken language, when given the right supports can and do communicate exquisite and powerful insights with words that are typed. Many are telling any who will listen that they’ve been capable of far more than any give them credit for. Because their bodies and facial expressions do not convey this, they are believed unable.

    • The hard thing, though, K, is that we are not all on the same side. I don’t know what kind of clinician you are; you didn’t say. I don’t know what your practice consists of. I don’t doubt that your intentions are good–MOST people’s are–but the thing is that ingrained prejudices and rampant misinformation, including among professionals, about autism and autistic people, often have well-intentioned people doing things that actually hurt autistic people.

      And most professionals still view autism as being some sort of a Problem. Which means that a child whose parents are listening to them, or putting them through therapies to minimize signs of autism, will learn that who they are and the way they are is a problem.

      I think (hope) that people who really, really hate autistic people, as opposed to wanting the best for them, are in the vast minority. In which respect, I’ll presume we are on the same side. But that’s not the only meaningful division. Do we have fully worthwhile and equally valuable lives AS autistic people? Or is autism an enemy, a Problem to solve? The latter almost inevitably becomes justification for either horrible mistreatment of autistic kids in the name of therapy, and/or our existence itself being seen as a Problem to solve.

      And the majority of the clinical world is still coming down on a side of that question that continues to do immeasurable harm to the lives of autistic people.

    • No. just no.

      if all you got out of this post was “Ariane hates doctors, how dare she?” you’re probably not one of the woefully rare “wonderful clinicians”. I spent 2 years at a special school a decade ago, and had to go back there this year. everyone who worked there truly believed they were “helping”, that they wanted the best for us, that they were “good” people….

      …I felt detached. walking up the driveway, my breathing changed. I couldn’t speak to or look at the receptionist. after we left, it took hours before I felt normal again. I’m feeling detached again writing about it now.

      I showed the new headmistress a printout from my blog, with a detailed description of still-vivid verbal bullying/public humiliation carried out by the receptionist (the same one who still worked there). I begged her to reconsider her plans to remarket the school, with autism as their speciality. I told her the staff valued their “good person” self image over our emotional well being, and dismissed anything we said that threatened that self image; we were “overreacting”, or something. she thanked me, and then told me that it was a long time ago, the school was different now. and, like that, the conversation was over. her good person self image was intact, and I was verbally neutered.

      I don’t want your pity, but you need to be able to risk the self image that made you take this job. you want to help people, great. if an ex patient told you the treatment you’d given them years ago still gave them nightmares, what would you say? are you strong enough to take the learning experience?

    • It seems as though what you’re saying is #NotAllClinicians / Therapists / Treatments / Charities which ultimately serves to ignore the voices saying #YesAllAutistics and that’s what we’re discussing here.

      ALL Autistics have been treated as less than, had their voices ignored or been spoken over the top of and this is essentially what you’re doing here. Instead of listening, accepting and adding your voice to the chorus of those trying to change the paradigm, you’re defending, arguing back and ensuring the current paradigm remains in place.

      I can understand why it is that you’re defending the good clinicians, therapists, treatments and charities. It’s hard to listen to the things being said, it’s uncomfortable but it’s uncomfortable because it’s true. Whether we have acted overtly in delivering the message of ‘wrong’ or whether we have implicitly supported it by not questioning or speaking up against it, those of us who are NT are all guilty in one way or another of allowing that message to not only exist but to flourish.

      It’s important to add your voice to the chorus and it’s important because the paradigm still exists. This means that people who need to be listening are unable to hear the voices of those that are the most important. They’re unable to hear them because they think they’re ‘wrong’ and ‘less than’ and need to be ‘cured’. They don’t value those voices but they value yours and they value Ariane’s and they value the voices of those around them who are ‘right’ and ‘equal’ so please, listen, accept and add your voice to the chorus,

  16. Z, you have to submit this to Huffpost. I read this and felt like screaming every single word from a mountaintop for the world to hear. Most amazing post ever. Love, Ang

  17. Thank you for this today. Best article I have read yet.

  18. As a pediatric psychologist, the greatest joy in my work is learning from and with parents, supporting them to take their rightful seat with professionals, not behind them. As a parent, you enter into a medical model world of labels, diagnoses, treatment mandates and prognosticators of your child’s future. If you do not decide what meaning this all holds for your child, then others will. Unfortunately, at present, treatment paradigms are all over the map. But I want you to know that there clinicians out here who value the child/family and view individual differences from the frame of neurodiversity and not pathology. Thanks for continuing to teach us all.

    • Thank you so much for commenting Mona. Over the years I’ve met some absolutely amazing professionals who are like yourself. They have the wisdom and humility to know that all of us are learning, that just because something is thought to be true, doesn’t make it so, that there is more to learn and understand, that being open and listening to the experience of those they mean to help is better than any academic degree.
      Years ago we took my daughter to a well known GI doc. I have never forgotten him because he was the first person we met who was a professional working in the field of autism who answered the vast majority of my questions with, “I don’t have the answer to that question.”
      I will always be grateful to him for that, even though, at the time, I was desperate for answers.

  19. “Ask a parent what they want most for their children and most will say, “Happiness.” Yet so much of what we are told about autism and our Autistic children is ensuring the opposite outcome.”

    Part of is that so many people have a really limited conception of what happiness entails. That the only happiness they can conceive of involves common coming-of-age accomplishments like driving, prom, marriage, and parenthood…combined with even more limited conceptions of what disability entails (and often flat-out wrong ideas of what autism is). So many people can’t imagine a worthwhile life for their child that doesn’t resemble the life they themselves have taken for granted…but so many *non-disabled* people don’t do those things, either, and yet are happy. The mystique and double standards built up in our cultural imagination around autism and disability, I think really impede a lot of parents from being able to imagine a perfectly acceptable life for their child as an autistic person, that might not look like the one they’d anticipated.

  20. Thanks Ariane. That reminds me of a wonderful moment just last month– I did a training for professionals and in the audience someone whose sister was diagnosed 50 years ago mentioned that in the 100’s of professionals her parents consulted, her 80 year old mother still remembers the one professional who gave her hope about her daughter. One voice who said she would have a full life (which she has) when everyone else said otherwise.
    So powerful, and professionals need to know what a profound impact (positive and negative) they can have on families.
    Take care!
    Mona
    I have a new post on finding therapies respectful of autism that may be useful to families early on the journey. http://www.thevisibleparent.com/are-therapies-respectful-of-autism/

  21. This message needs to be spread, along with Carly’s and Ido’s and all the other autistics who have finally learned a way to communicate their feelings. I have learned So much in my few short years of working with people on the spectrum. Must of what I learned before was wrong! We need to hear it straight from the horse’s mouth, and the teachings about autism need to change. How do we get this message across to teachers, parents, caregivers?
    I am so frustrated on a daily basis watching people fully believe that their child just “doesn’t understand” all because gee can’t speak or control his impulses. Its lonely being the only one who believes in him when no one else will listen because they only believe what they’ve been told.

  22. Pingback: Some Thoughts to a Thought Provoking Post | Ido in Autismland

  23. I couldve written this, this is exactly the same path we took. Our ABA therapist came to my house a week ago and said the same exact thing. So now, how do I accept autism while still not accepting those things that limit my son? How do I differentiate between autism and his personality? Does anyone else struggle with this?

    • Paola, I will only speak for myself… it was critical that I stop thinking of autism as something separate from my daughter. It was essential that I embrace her Autistic neurology and identify all the assets of her neurology. Focussing solely on deficits for any neurology is soul crushing. I had to recognize and acknowledge that there are challenges for non autistic neurology as well. I needed to understand what it means to presume competence and to respect my daughter.
      Instead of thinking of how I was going to change her, my focus is on how to support her and encourage her to be self confident, so that she can better advocate for what she needs. Instead of focusing on all the ways in which she has trouble navigating the often mystifying rules of social engagement, I try to help her communicate through typing, thus mitigating some of those issues that inevitably arise.
      I think we, humans, sometimes fall into the trap of believing that if we don’t accept something, that will change it, but in my experience not accepting only makes everyone miserable. Our children look to us for unconditional love and complete acceptance for who they are, it is (in my opinion) our job to do just that so that they can then learn to do that for themselves and to others. Believing parts of ourselves are unacceptable has never been a great motivator for change, in my experience. It is through love and gentle kindness, while modeling the behavior we’d like to see in others that seems to work best. None of us can do this well or even at all, all the time, rather it is an ideal to work for…

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  25. I think people, as well-meaning as they are, make assumptions about what differently-abled can and cannot do which ends up stifling differently-abled people.

  26. Yes…Happiness and to Love and be Loved….are generally what we as parents want for our children. And yet there is such hopelessness and despair when it relates to autism. While too many might see autism as something that needs to be “overcome” in order to be happy or to have loving connections. I believe that it is more of an AND situation. Autism AND happiness; Autism AND love. These things co-exist. Your posts always demonstrate this.

  27. Pingback: Parenting an Autistic Child | skg917

  28. Experts, what do they know, they deal in theory and have great pleasure in fixing labels to persons whom they consider to be in their field of expertise. They feel that the persons have to be fitted into the label and the theory, which is to be followed at all costs.

    What these experts fail to see is that each person is an individual and as such all persons are different. To admit this is not an option as the theory does not account for this.

    In every thing the person has to come first not the theory. To progress the person this has to been done at the pace of each person and it is their choice which has to be abided by.

    But the experts and Society can not allow this, as they feel that for each person to exist, they have to fit in with the system and individualism is not allowed for.

  29. Pingback: Is ABA Therapy Abusing My Child? | Disrupting the Spectrum

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