Henry Makes Waves & Everyone’s An “Expert”

Yesterday the interview (published on Huffington Post, click ‘here‘) with Henry, the 13-year old non-speaking Autistic boy, son, brother, friend, student and all around amazing kid who has been denied enrollment to the public school across the street from his house went viral.  At the moment it has 152 comments and over 1,000 people have “liked” it, with almost 400 people sharing it on Facebook.  The comments began pouring in yesterday afternoon.  A few were particularly troubling for a couple of reasons.  The first being that a completely uninformed person(s) made broad sweeping generalizations about autism while bolstering their opinions with statements like this:  “and then there are the non verbal Autistic who need constant care.  One can’t tell if they understand language, but they can’t speak for some reason. I do know this as a fact from the Autistic that I’ve worked with in my youth.”  Another commenter suggested, “Maybe he should consider speaking …..If he wants to go to that school so badly…”  And yet another said something about how Autistic kids “drag” the rest of the students down.  All of these comments were uninformed, but the thing that was actually frightening  was when another commenter then referred to the first commenter as an “expert”.

So I lost it.  Completely.  Utterly.  Lost.  It.  Heart racing, hands shaking, head pounding, throat constricted, feeling nauseous, lost it…  Which is how many who are marginalized and live with prejudice, feel all the time.  That feeling of terror that their lives are threatened and in real danger as a result of incredible ignorance.  I should have walked away.  I should have done some breathing exercises.  I should have meditated.  But I didn’t.  Instead I reached out with words and hit back.  I used words to hurt.  I used words to wound.  I didn’t ask questions.  I didn’t wait for more information.  And here’s the thing, I don’t know that I was wrong to do so.  I feel ambivalent.  I feel I should regret my actions more than I do.

I responded with this: “…the degree to which you misunderstand Autism is actually more than frightening, it is terrifying. That you also worked with this population says more about the tragic state of the place you worked and their hiring policies, not to mention their training, which appears to be none, than your profound ignorance.”  To which he responded, “I wasn’t hired to do anything. The camp/school had normal and special kids and they had that one Autistic boy. I was nine. I wasn’t hired.”

People in the comment thread were describing a man as an “expert” who claimed knowledge of autism because he met an Autistic boy when he was nine years old.  At camp.  Nine.  And I thought of Joe Scarborough and his comment about the Aurora shooter.  I thought of Simon Baron-Cohen who actually is something of an “expert” and yet I completely disagree with his conclusions.  I thought of all the doctors, researchers, neurologists and “autism specialists” I’ve met, spoken with and consulted over the years, many of whom I do not agree with and some whom I do.  But the point is, so much of this is up for grabs.  There is a great deal of information out there that all of us have access to, but how do we know what is correct?  We’ve got doctors drawing conclusions that seem illogical and even irresponsible, while others whom we might agree with.  There are some very smart people out there working hard, publishing their work, making informed opinions, but how do we know who to believe?

I don’t.  What I do know is that anyone I read or hear I try (usually) to find out more about.  Who is this person?  What are their credentials?  What is their hands on experience?  And I get a second opinion from those who are autistic.  There are a number of people, all Autistic whom I particularly respect (this is by no means a comprehensive list and in no particular order, just thinking off the top of my head; please feel free to share anyone else I may have forgotten) Judy Endow, Lynne Soraya, Emily Willingham, Elizabeth J. Grace and Michelle Dawson.

A commenter on this blog wrote a hilarious comment about “Dr. Mom”, “Nurse Mom” and “Psych Mom”.  It was not only very funny, it was relevant to all of this. Who do we believe?  Hopefully not the guy who states they “know this for a fact” as compelling as the man might be for some.  And I’ll just add this; don’t believe me either.  I’m a mom.  I’m a writer.  I’m an artist.  I have opinions.  Sometimes I have really strong opinions, opinions that I think are right.  But I also know that over the years as I learn more, I no longer agree with many of the opinions I held a year ago, two years ago, three years ago.  My opinions change.  All I know is that I want to keep learning.  I want and try to keep my mind open.  Sometimes it’s really hard.  Sometimes I feel tremendous rage.  I don’t learn when I’m that angry.  But hopefully I calm down enough that I can go back to learning.

Let the learning continue!

51 responses to “Henry Makes Waves & Everyone’s An “Expert”

  1. Wow, Ariane. Right on (Write on also)!!!! Just one correction – I don’t think all those folks you mention by name are on the spectrum. But then again, in some ways we ALL are. Truly frightening how much we all have to learn, but so very important to readily admit we don’t know much of anything for sure 🙂

  2. That is what all this is for.(beyond personal sanity and growth).. because so many don’t know, even when they think they know. You are part of an early movement that sadly should have been started years and years and years ago. We are learning and growing and finding ground and to be honest, I was very misinformed until I had to be informed. If it is not directly in your life you might not even care to know. In reality, the main idea to cover all ground and to teach all that needs to be taught…. kindness and compassion. live it. do right and pay attention. people are all different and we all need kindness and compassion. Its not all about you or how the world is threw your eyes. there are many many more eyes out there. (not “you”… but “you” as in every single one of us)

    • “Kindness and compassion…” I didn’t do that. I felt no kindness or compassion. This was my mistake. I didn’t. And horribly, I still don’t. Well, maybe a glimmer, but not much. Will sit with that…

  3. “Believe those who are seeking the truth; doubt those who find it.” ~ Andre Gide

  4. Bravo Ariane! That’s my girl! Stand up for Henry! Stand up for Emma, for yourself and your right to be heard, and go on writing/righting the world.

    I am SO proud of you, and glad to be your mother!

    Paula/Mom/Granma

  5. You must have done a good job Paula.

    There really isn’t much to say about the reactions and comments yesterday. The alarming bit is they are entirely typical.

    The day after the topic on the issues to do with how verbal is thought of a nurse I was not expecting and to be honest don’t like came to my door. The shock of seeing her temporarily robbed me of my ability to talk. She used that time to speculate that maybe I was getting too much help if I couldn’t cope with it and didn’t want to talk. Kept saying inane things like she was giving me a chance to talk and if i wouldn’t they (not her specifically but the program I am currently on who does have some decent people as well) can’t help me. Sort of like comply with our expectations of what it means to be autistic or we will take away the supports that keep you from needing even more restrictive care.

    The only time we ever had an educational issue was when I started as the confusion between speech and intelligence that exists in so many minds had the school quick to label me mentally retarded. They would go from that position to wanting to shuffle me off to schools better suited for my academic needs in fairly record time but it’s odd and discouraging that the same battles have to be fought every generation. My doctor mentioned something optimistically about the younger generation of those with autism yesterday and I had to say it seemed like not as much changes as one might expect.

    You do need to tackle Simon double barrel weird conclusions soon. Boggles my mind still that as a somewhat reputable scientist he can’t work out his measured lack of empathy is the result of a rather limited scale. I know you did once already though but it still bothers me because I know he has a popular following and people will latch onto those ideas and it will hurt the autism community.

    • Oh Gareeth, how awful. It’s horrible how massive the misunderstandings are, particularly when it is a caregiver, who is, (supposedly) more experienced and has a better understanding of those they are hired to help. And of course her threats must have only increased your upset and inability to converse, which makes it all even more horrendous and awful.

      As far as the slow movement toward change… well it is just very, very slow. I have to believe it will continue to change, even if far slower than any us would like. Look at women’s rights, we’ve come a long way since 1913 when women were given the right to vote, but wow(!) it’s been a hundred years and we still have so much further to go before there’s “equality”.

  6. Ariane, your post today, at least to me, is a reminder of the pleasant Internet world we have created in WordPress, a world where even when we disagree on something we do it politely and respectfully. But sadly elsewhere in the Internet world there are many trolls. People who seem to thrive on being inciteful, not insightful. Their purpose, their joy is to piss off people. Why? Good grief I don’t know why. I am so glad I don’t know why, so glad to not understand such motivation. Keep up your good work and remember, don’t let the trolls get you down. We love you! 🙂

    • I’m always, always surprised how venomous the commenters can be on Huffpo. It is unlike anything I’ve experienced anywhere else. It’s like walking into an angry mob wearing a sandwich board that says “Kick Me!”

  7. Having watched the comments on HuffPo pour in by Ariane’s side last night, and provided whatever I could in the way of comfort and encouragement as the idiot elite weighed in on all things autistic, I don’t mind a bit that you…Lost. It. These morons need to be bitch-slapped into unconsciousness if necessary, if for no other reason than to intimidate them enough to shut their stupid yaps and quit spreading the vile infectious spewings of their ignorance, intolerance, bigotry and just plain mis-information.

    And bravo to you for doing what .0009% of all pundits with any decent-sized soap box refuse to do: refuse to declare yourself an expert, but instead a concerned human being with strong and very well-informed opinions. No one I know has studied more articles, read more books, talked to more people in a continuing effort to improve the scope of your understanding of autism and autistics. If you chose to call yourself an expert, I doubt that there’s a single subscriber here that would want you to put that word in quotation marks, but the fact that you don’t is just another testimony to your integrity and honesty.

    As to every idjit who is probably still posting more divisive, hurtful and uninformed comments, there’s still no better way to describe you and your casual musings than that well-worn, time-honored appellation: asshole!

  8. Ariane and Richard. Thank you. It’s nice to know there are rational people with good hearts willing to dress down these folks because I get tired. Hugs to you both.

  9. You know, I started reading the comments secion on HuffPo yesterday and then just sort’ve gave up in frustration. The good news is that you ARE getting through to people, even stubborn me!

    Risa’s teacher called me this morning to set up her IEP meeting that’s due. Being right after school, she asked whether I’d arrange for childcare, or if we needed to have it in the classroom so the kids could be there. Here’s the thing….it didn’t even OCCUR to her that maybe there shouldn’t be a roomful of people discussing Marisa, *with* her right in the room to hear everything we said. The thought never even crossed her mind.

    Ironically, this teacher has a special needs child herself. Her teenage daughter has cerebal palsy, and is about the level of a preschooler. I can’t help but wonder where she fell on this issue with her own child.

    To be fair, a year ago, even six months ago, it wouldn’t have occured to me, either. I did, however, tell her I’d arrange for my mom to watch them (luckily my folks live right across the street from the school) and that I’d prefer we not discuss such things in front of her. Did she get it? I don’t know – but this is an educator, with a Master’s Degree in Special Education. 😦 So much for “experts”…..but I guess that’s where I have to cut slack. It’s been ten years, and I’m just now learning these things!

    • Angie,
      I can’t tell you how happy this makes me. Good for you! Good for you even more that you said something in a calm matter of fact way!! And here’s the thing, one year ago, I wouldn’t have thought anything about her comment either. So we’re both learning and we’ll continue to learn. It’s okay. We both took awhile, but we’re both progressing and it’s great! I was talking to an Autistic friend yesterday, well I was ranting to her about some of the comments that were coming in and how this one guy was saying such outrageous stuff and that another person was deferring to him and saying he was an “expert” and she said, oh you have no idea. Sometimes the experts are the worst. So yeah. Here’s to all those “experts”.

  10. Reading this while in transit! Way to go! Glad you gave him heck! Well I guess we got teen doctors too now! Lmao Henry you got one hell of a champion! You should do well boy. You should do well!

    • I think Henry showed far greater restraint than I did. I need to take a page from Henry!

      • Hi now that I’ve had more time to both read and write, I figured I would put my two cents in proper. Just so you know this will be a two part answer. That was the warning! I will put the second part in another blog about diet cause it more pertains to that. But both comments go together. Well let’s talk about Henry. Ok I signed the petition right! I did read before signing. I don’t just sign petitions, I read them in full. Because what happens if I don’t agree with what I read. If I do not agree, I don’t sign it. There, that’s it! That’s all! Nothing more! Notice I did not make a comment after signing it on the blog. Here’s why. I don’t know much about Henry! I really don’t know Henry. I know he’s a kid and he happens to have ASD. I know he uses a iPad to talk and learn. I know he wants to go to school. I know he has made a video. I know that he really wants to go to a mainstream school but has been denied. I can see Henry has cute sign and a dog! All of this is just great. But I still don’t know henry. I have two boys with ASD and they can both go to a mainstream school. So I actually don’t really truely understand why Henry is being denied but I live in another country then Henry. This is huge. I have no real knowledge about your education systems. I have to depend on the news on TV and what’s in print, to know about your systems. Oh and like two courses I took on Amarican history and politics. Did the courses I mentioned say I have a clue about your education system? Nope. I know a lot about my education system but I don’t know yours. I don’t truely know why he’s being denied. I also don’t know Henry. Not knowing all the sides of the story, I made a decision to sign the petition based on what I knew but not make a comment cause I’m not stupid. There that’s really it. Oh I could google your education system so I can make my opinion sound awesome. But why? Why not do something else. I find that there’s people all over the Internet that love to make comments on all kind of things. They spend the day going I want to be rude but I can’t be rude in person. But the internet is not in person, so I get to be as rude as I want here. Would many of those comments be flung at Henry face to face with others watching? The sad answer is yes. Henry will have many people call him names on his journey through life. Does that mean we say ” well Henry get use to it” . Nope this is the real fight we have. We need to yes fight the bigotry and the bad social attitudes that bind us but not let the fight define us. How we fight is another matter all together. What I wish is that more people would go through the process I did. Asking themselves do I even know Henry? I don’t know what he can do or not do. Now if you don’t sign the petition then so what. If you dont believe in something, don’t sign. Just leave it alone. I do it all the time! Please sign this petition to bring this war criminal home … Nope! Don’t believe in it! So I didn’t sign it. Didn’t know all the facts so I didn’t lay any comments ( not stupid enough to try and pretend, smart enough to know I knew nothing more then I don’t want war criminals in my country). The person that commented based his comments on the one kid he met at age nine. And we all wonder why elections go the way they go sometimes. This person actually votes for stuff. This brings me to my last thought we do it to. We in the Autism community make the one person be the person we base all our thoughts on about autism. I wasn’t in this kids camp or class. I don’t know the kid he’s judging all Autistics by. But this kid he uses as a marker for all his knowledge isn’t mine. When we as the Autism community make one person Heath or abilities be the marker then we are doing the same thing. I love books written by Autistics. I think that they explaine so much about what is going on in side many but they are not every person out there in the planet. Every person doesn’t have the same upbringing, resources, living conditions, health, intellect or ability. My strengths are not the same as another persons. My weaknesses are not the same as someone elses. Someone can’t judge all people based on me. I can’t base all people based on just one person.
        Now I’m on to the other blog you wrote about diet. Because why not! Why not just put my two cents in. Ramble ramble ramble…

  11. Ariane, did you see the video of a panel in which Carly Fleischman interviewed Senator John Kerry at the Nantucket Project? (http://www.nantucketproject.com/tnp-2012-autism-panel.) I won’t comment on the “experts,” Senator Kerry’s comments, or the subtle inferences to be drawn from the seating arrangements of this panel. But Carly was sensational, a joy to listen to.

    • Carly is such a great force and I hope will continue to speak out. It was worrisome to hear the way autism was so casually discussed, comparing it to cancer and using words like “combatting” when the young woman asking the questions was Autistic.

      • It was always disturbing to hear Autistics talked about in these terms at IACC meetings, even though all the speakers knew that Autistics were in the room. When I used to go to every IACC meeting, I was typically the only Autistic there. Talk about feeling like an insect specimen…

  12. I read some of the comments from your HuffPo post and couldn’t handle reading more. I’m obviously still not used to this: the realization that this is “the norm” and this type of reaction is more the rule than an exception. I almost feel ashamed for some of these “fellow neurotypicals”, the taste of disgust so strong in my mouth I can’t spit the term out if I tried.

    • HuffPo has a particularly nasty and seemingly uneducated group of followers, but one cannot just shrug them all off as trolls, as I’ve seen and heard from too many over the years. I’m not sure why Huff draws such a rabid group, but the number of people who know almost nothing or very little about autism is certainly a significant portion of the population, which really does always surprise me.

  13. It is also important to remember that we now have a multi-million dollar industry that is focused on “fixing” people who don’t need to be fixed. So there are thousands of “experts” in our society whose job security depends on propagating myths and lies about autism. If they told the real truth about it they’d all be out of a job. It’s easy to become delusional when your job depends on it. So they go around preaching like evangelists about how they have the power to heal and cure something that doesn’t even need to be cured. In the 50s, they gave people lobotomies and some people seemed to show signs of improvement and others didn’t. Today, the lobotomy era is considered to be a dark period in the field of psychiatry. In the future, most of the things people do to autistic kids today will be looked at in hindsight in much the same way we now think about lobotomies. But the “truth” is already out there now. After a truth is established and becomes “common knowledge” it is almost impossible to change it, regardless of whether it is actually true or not.

    “The very concept of objective truth is fading out of the world. Lies will pass into history.”
    ~ George Orwell

  14. No no no Richard! Not a “Bitch Slap” I say we “king Hit these idiots. Frankly Ariane I think you were too kind to them in your responses. What you objected to was ignorance and bigotry- nothing wrong with doing that.

  15. What is scarey is that as bad as things are now, in the 60s the refrigerator mother theory still reigned supreme. Even in the 70s and 80s.

  16. Ariane:
    1. Thanks for standing up for Henry.
    2. Thanks for the love. The respect is mutual.
    🙂

  17. Ama Rainbow Love

    “Here’s the thing….it didn’t even OCCUR to her that maybe there shouldn’t be a roomful of people discussing Marisa, *with* her right in the room to hear everything we said. The thought never even crossed her mind.”

    I am finding this really hard to stomach, because basically it is saying that it is okay to talk about an Autistic person in ways they would not be able to cope with hearing, as long as that person is not in the room to hear it. This sets up a power dynamic that is profoundly unhealthy – of acceptance of the exclusion of a person from discussion about their own life, and of not being ‘allowed’ to know what people are saying about them.

    Whilst it may be argued that this is to ‘protect’ the child, it doesn’t actually protect them – other than from actually hearing the words that are doing damage in their life. Those words are still doing damage in that person’s life, and moreover, the person whose life is damaged by those words is not ‘allowed’ the opportunity to connect the words that are doing the damage with the damage itself. For a person with communication disability, this is a hugely disabling thing – just as disabling, if not more so, than being in a room with people speaking in negative and inaccurate terms ‘about’ them.

    What really needs to happen is for our allies to INSIST that professionals speak about Autistic children – and adults – in positive, respectful, and accurate terms, and to be mindful of the impact of what is said on the Autistic person’s self-esteem. That should go without saying, whether or not the Autistic person is in the room – which should be THEIR choice, if it is THEIR life that is being discussed. If the Autistic person would be distressed about something that people want to say, don’t say it! As a general guide, if you (used generally not to anyone specific here) would not want to hear it about yourself, don’t say it of an Autistic person. If there is something difficult for the Autistic person to hear that needs to be communicated, do it in a sensitive and caring way that enables the Autistic person to see the logic behind what is being said, and any suggestions made about it – and most of all that it is in the spirit of caring about and supporting the Autistic person as the whole and equal human being that they are. It’s really time to accept that there is a difference between fact and opinion, and the pervasive opinion that Autistic people are less than whole, equal and human is NOT a fact, any more than it is a fact about people with different coloured skins or different sexual orientation.

    I apologise if i come across as attacking or critical of anyone here – i know people often perceive me to be so when in actuality that is not my intention. I’m writing from a place of overwhelming pain and distress as an Autistic parent who went through years of hell during which i repeatedly found myself either in meetings where my Autistic child was being discussed with him present, or with him excluded and expected to sit in the lobby of the building because i had no-one to take care of him. Although i am able to write very clearly at times, i have serious communication disability (I am often completely nonverbal for weeks or months at a time ie unable to access words and despite my ability at times to write very clearly, there is a great deal of my experience that i am completely unable to verbalise), and my son was also predominantly nonverbal at the time… neither of us was ever offered any communication support, and we both were discussed in negative and inaccurate terms, both in our presence, and out of it – with the choice of our presence or absence being the choice of professionals, not us. Ten years on, we still don’t have the support we need, we have been homeless for 7 of the past 10 years and the 3 years that we weren’t homeless were spent terrified of being evicted until we were. My son’s education has been completely disrupted and my own life reduced down to being punished endlessly for not being able to act as if i don’t have the severe disability that i do, to the extent that many of the coping strategies it took me a lifetime to build up have disintegrated under the extreme pressure and stress. All of this has caused immense damage to our relationship with each other and undermined everything i worked for to raise my son as a free Autistic human being. I’m in my 50’s now, and completely denied any voice in the conversation about my own care and support arrangements. I live in constant terror that one day my verbal communication will be lost entirely as result of the relentless pressure to be verbal when i am unable to, and of what will happen to me and to my son if it is.

    What i am trying to say is that the attitude expressed in the quote above sets a dangerous precedent that does not go away in adulthood, and ultimately adds to the very real threat to our lives that discrimination is. These things can ONLY happen in context of a culture of acceptance of the exclusion of Autistic people from discussions about our own lives, and of acceptance of the ‘need’ to speak of us in negative inaccurate terms because that supposedly fulfils some ‘need’ that will bring us help and support. It doesn’t EVER bring us the support we actually need because negative inaccurate information ‘about’ us means any support is founded in untruth and therefore is not help and support of US as the ACTUAL human beings we are.

    PLEASE, if you truly want to help Autistic people, stand up for our right to be part of the conversation about our own lives from VERY young age. Advocating FOR us is GREAT, but ONLY if the purpose of that is to support us in our SELF-advocacy… and to put pressure on professionals to accept OUR voices and OUR choices as the determining forces in OUR lives.

    • Ama, thank you so much for writing this. I cannot thank you enough, actually. This was not something I had considered and now that I am thinking about it more, I realize how insidious all of this is, because why isn’t my daughter present at these parent/teacher conferences? My son is asked to be present and has been since he entered middle school. If a teacher or anyone in the room spoke of him harshly, rudely or inaccurately I would immediately say something to them and he would hear me speaking out against this kind of talk. Why is this not the case with Emma? So you’ve given me a great deal to think about.

      I am learning, Ama. I really do WANT to learn. I want to know what I can do that will help, not just my own daughter, but others. I really appreciate this. I did not feel you were criticizing anyone, I read this as a passionate response to earlier comments.

      “These things can ONLY happen in context of a culture of acceptance of the exclusion of Autistic people from discussions about our own lives, and of acceptance of the ‘need’ to speak of us in negative inaccurate terms because that supposedly fulfils some ‘need’ that will bring us help and support. It doesn’t EVER bring us the support we actually need because negative inaccurate information ‘about’ us means any support is founded in untruth and therefore is not help and support of US as the ACTUAL human beings we are.”

      Thank you for this. Yes. I understand. Let me try to do better.

      • Ama Rainbow Love

        “I am learning, Ama. I really do WANT to learn. I want to know what I can do that will help, not just my own daughter, but others. I really appreciate this. I did not feel you were criticizing anyone, I read this as a passionate response to earlier comments.”

        Ariane, I was so fixated earlier on what i was trying to say that i forgot to thank you for the extremely important work you are doing in raising your own and other people’s awareness of Autism, and of the problems faced in society by Autistic people as result of (often seemingly wilful) ignorance. I apologise for that, because i do not mean to imply that your efforts are ‘not good enough’. I understand that you are learning, and it is very evident to me that you WANT to learn. I’m always deeply appreciative of anyone who takes on this work and is willing and able to put themselves in the firing line of ignorant bigots who choose to justify discrimination rather than listen to what it is really like for those who live on the receiving end of it, and do not have a choice about that. It touches me deeply that you use your gift for writing in service to Autistic people. I really want you to know that.

        Thank you with all that i am for your powerful commitment to learning not only about Autism but also about the ways Autistic people are treated in the world, to sharing what you know and also your doubts and uncertainties, and the pain you experience when you realise you have made mistakes. Thank you most of all for your deep and powerful commitment to move past your own defensiveness, and to opening your mind to what is beyond that. I have wanted to write to you before now to ask you to please forgive yourself for the mistakes you have made in trying to help your daughter; the most important thing is not that you made them, but that you see them for what they are and are powerfully committed to learning from them. Your love for your daughter shines through everything you write – including your openness to listening and taking seriously the communication of Autistic people other than your daughter… that tells me that your love of her is great enough to embrace the community that she is part of, whether or not she herself is aware of it, either now or in the future. it is because of that most of all that i Felt safe to write and post my earlier comment.

        Thank you for hearing me and taking me seriously and for your feedback on what i wrote. You have help to build my confidence – to reach beyond my terror of being attacked or denied – and find the strength and courage to speak out more on my own and others’ behalf.

        • Ama (I just realized I had misspelled your name, but have corrected it!)
          An Autistic young man wrote me “how am I going to learn if no one is willing to teach me?” It made me think of all my Autistic “teachers” all the people who have been willing to write me and patiently tell me what it’s like. I don’t know what it’s like to be spoken of while in the same room, to have a great many people making decisions for me and about me as I sat silently by because I couldn’t speak up or because I was taken somewhere else when those decisions were made and so had no say. I don’t know what it’s like to not be asked to participate or having people ask me questions that I could not answer because I didn’t have the language to do so. But when I listen to yours and others words about how that feels, I try to imagine what it would be like and I understand, or think I begin to understand. Thank you for giving me the opportunity to learn and to try to understand and to make the necessary changes.

    • Ok – I see the point you’re trying to make. I truly do. But with all due respect, you’ve never met my child. I know you mean well, but here’s the thing –

      My daughter isn’t going to in any way “participate” in this meeting. And no one said we were going to be “negative”. My daughter is completely non-verbal, but she understands much of what is going on. We’ll be discussing some sensitive issues, including her aggressive behavoir at school. I do not want her in the room listening to this discussion. I’m scared it would make her feel badly about herself.

      Look, I’m the first to admit I’m learning. But I’ve been talking about my daughter in front of her, her entire life. I’m trying very hard to not to that anymore, and not let others do it, either.

      I’m doing the best I can, trying to meet her needs both in school, and out. I see no benefit to having her present at a meeting like this.

      So again, with all due respect – you don’t know my child or what is best for her. Thanks anyways.

      • Angie,
        Ama wasn’t attacking you or suggesting she knew your child. I know this as evidenced from what she wrote, “I apologise if i come across as attacking or critical of anyone here – i know people often perceive me to be so when in actuality that is not my intention. I’m writing from a place of overwhelming pain and distress…”

        I know how hard you’ve worked to get to this place, Angie. And you were telling me in your comment to me because you were proud of yourself and you should be! I’m proud of you! It is fantastic! Really, Angie, it is wonderful and I am cheering you on and continue to cheer you on. Take this a step at a time. You’re doing great!

        Ama is bringing her personal experience, her pain and distress to the discussion. Try to remember she is writing from a place of having been in that room, sat at that table as others made decisions about her life and behavior.

        Angie – you are doing great!

        • You know, I didn’t mean to come across as so snippy and defensive. I’m just trying to make the best decisons I can for her, and it stings when someone quotes something I said, then follows up by saying it’s really hard to stomach. As if by not including her in this meeting, I’m somehow setting her up for a lifetime of abuse.

          Anyhow, it just upset me. I think I need to take a break from coming here for awhile – when it starts getting to the point where I read so many conflicting points of view that I feel I’m doing *nothing* right, it’s time to step away for awhile and re-group.

  18. Yes I did. To mr it seemed pretty obvious in his first post he was building himself up to sound like he worked with people with autism but then you caught him out.

  19. They are in need of people like you to help them understand something they think they know, but really they have a world of learning to do… and more so listening. I am so thankful to have found you and fallow your writings. You are an expert mom of a daughter who is E and she is lucky lucky lucky to have you, even with the diet and all the other things that well good meaning were not where she needed to go. We all do that and the difference is kindness and compassion. You showed E that you do what you believe is right but that you don’t spot there, you listen with your heart and if it turns out not to be right then you do something different. People will be who they are and we can hope that at some point they will start listening with kindness and compassion and stop talking with judgement and guesses and accept people as people.

  20. This blog is one of the places where I DO read comments, even look forward to them. Most news sites I don’t even go there, because I know it will get me riled up. That means I lose my ability to articulate myself well anyway, so it becomes a futile exercise in stressing myself out.

    Thank you to all the wonderful people that read and comment on this blog and others, and those who write their own blogs. You are doing so much already with your words. It might not be changing the bigots and the “idjits”, but you’re all contributing, adding weight to the other side. You’re changing each other, you’re changing me. That’s changing the world, isn’t it?

    • Thanks so much for this Nicole. I feel the same. I am so grateful for the comments left on this blog. Through the comments left on other blogs I found blogs written by Autistic people, some of whom I am even fortunate enough to call my friends. It completely changed my life. This is not an exaggeration. It has changed my husband’s life. It has changed my daughter’s and my son’s life. Your comment left here makes me happy. I feel that much more encouraged because of it. As a result of your comment, I am reminded of how important it is to reach out to someone else, to return the kindness you’ve left… and the ripple reaches others, some of those people may feel as you and I do and will reach out as well and the ripples now become even larger and reach farther… beyond anything we can imagine…

  21. Pingback: Those Who Influence.. | Emma's Hope Book

  22. Pingback: Henry & Emma’s Story | Emma's Hope Book

Leave a Comment

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s