“Picture Day Moments”

Yesterday was picture day at Emma’s school.  Over the weekend I went to the photographer’s website, paid for the photographs online, chose which packet we wanted and then filled out the little envelope that had been sent home and placed it in Emma’s back pack.  Emma and I discussed picture day and she carefully chose what she wanted to wear, a red velvet dress worn with black velvet leggings.  She’d washed and rinsed her hair the night before with particular care, and as she waited for the bus, she smiled at me and said, “Smile!”  I laughed and told her I couldn’t wait to see her photograph. The bus arrived and off she went, sprinting up the steps, with me waving good-bye.

That afternoon I had a meeting at her school with a few people from her team.  I was informed that there’d been some issues in the morning with Emma distressed.  Something about wanting to leave the room.  There was mention of her wanting to leave the room because of it being picture day, but that she had to stay in the room and was not allowed to leave.  I assumed that was because the other children were waiting their turns too and didn’t think to ask for more information.  The conversation veered off to other, seemingly more important, topics.

When I returned home with Emma I opened her back pack to find the envelope for picture day just where I’d left it.  No one had taken it.  Still, I didn’t put two and two together, didn’t think to ask Emma about it and besides, she’d already been asked to write with me that afternoon at school.  I emailed her teacher telling her the envelope was still in her back pack and received a reply that they hadn’t seen it and therefore assumed that I did not want Emma to have her photograph taken, but that she had been included in the class photo.  And I felt that awful feeling when your throat feels swollen and you can feel your heart beating and your chest constricts and your breathing becomes shallow and your vision blurs.

This morning I spoke with Emma about picture day, telling her there’d been a misunderstanding and how sorry I was.  I asked her to talk about it.  She told me how upset she was that she didn’t get to have her individual photograph taken as the other children had.  “I’m so sorry” I kept saying, but I can’t make what happened any different.  I know it’s just one incident, something relatively small and in the grand scheme of things not particularly important, but you see, this is just one example of what occurs regularly for our kids who do not speak, or, as is the case with my daughter, cannot say what she necessarily intends.

There are dozens and dozens of “picture day” moments.  Little things where she is misunderstood, cannot initiate a complaint, is not asked the right questions, cannot “speak up”, cannot protest with a reason why, instead she is thought to have “behaviors” when she tries to leave the room.  Assumptions are made, well meaning staff decide they understand her and know what is going on, and maybe they do, but maybe they don’t.  How many “picture day moments” happen from one day to the next.  Expectations and questions gone unanswered, thoughts and feelings unable to be formulated into words, or words at the ready if others were only capable and able to support enough that those things could be expressed.  How often?

Teachers are trained in a definition of autism, that is incorrect.  A definition that assumes intellectual disability which is connected to an inability to make oneself understood, low IQ, problematic behaviors, unable to read aloud and therefore cannot read, a whole series of assumptions are being made daily about Emma and kids just like Emma, but those assumptions are based on a false premise.  Teachers must give our children state required assessments and those scores are believed to represent capability when, in fact, they do nothing of the kind.  Our children must prove that they are not the sum of what others believe to be true.

There is so much that is wrong with the way we think about autism and Autistic people and it begins with our children and continues from there.  Our children who are then put into schools, most of them ill-equipped to help them flourish, spend their days in classrooms where they protest in little ways all the time.  The Board of Education is a massive machine and it is one that must change from the bottom up.  The premise they are working from – that what our children who have the ability to speak words are saying exactly what they mean, that their spoken language represents what they are capable of, that those who cannot speak, who protest by biting themselves, hit their heads against walls of brick and concrete are demonstrating “behaviors” as opposed to actively protesting a system that is not helping them, curriculum is dumbed down, life skills are taught, a high school diploma is not a given, college is not viewed as a realistic goal, all of this is wrong, so very, very wrong.

How many “picture day moments” does a child have in any given day?  How many?

Picture Day ~ 2008

Picture Day ~ 2008

71 responses to ““Picture Day Moments”

  1. Oh no…Emma, I am so, so sorry. I sped up reading, hoping I was jumping to the wrong conclusion about what happened, and it just broke my heart. I am sorry that as Mom’s we can’t take these awful moments away, erase them from memory, delete the hurt…
    Moments of destruction of trust and hope make me want to cry, and I am sorry for you both, and beyond angry at the school.

  2. Oh Ariane, that is truly heartbreaking. And so true – the many, many “picture day” moments where people are misunderstood and their responses to the misunderstanding of others gets chalked up to “just another pathology”. Ouch.

  3. Cannot begin to count how many times this has happened – many aides just never sent things home, making up their own conclusions about what we would or would not like to do.

  4. 😦 that is so heartbreaking. Did the teachers not make the association when she was upset and trying to leave the room? Our schools offer “retake” days for children who were absent or whose pictures didn’t turn out well- is that an option? Poor Emma

  5. Ariane, I know how ineffectual it feels to just say “I’m so sorry.” It doesn’t change what happened, but it still matters. It matters a whole awful lot. There are countless kids who are told if they are too weak to express their needs, they get what they deserve. If they hear it enough, from the people who supposedly love them best, they believe it. You stand and tell Emma it’s not her, but the world that is wrong. I love you for that.

    • This comment is really resonating with me, articulating very clearly what came up for me when reading this heart-wrenching post and remembering my own childhood. I so wish there were more parents, teachers, and peers like Ariane, who could remind us all that we are not weak, but that the world isn’t living up to what we deserve.

      I’m so sorry to hear about this incident. I truly hope that Emma can find some comfort in writing about it, even if it can’t undo what happened.

  6. How many phone calls have we received from Emma’s school telling us that Emma is upset and bit herself? At least a dozen. Yet on the day of her school pictures, no one can make it to the phone to ask if Emma wants to get her picture taken, nor do you bother to look in her backpack to see that we left the envelope giving her permission.

    I guess her teachers expected Emma to tell them what she wanted, or to answer a question (if they bothered to ask her). Because no matter how many times we say the same thing, and Ariane comes to school for training sessions to teach them how to write with Emma, they just DON’T GET IT that spoken language is NOT how Emma communicates her true thoughts most effectively.

    How many more of these lost “picture day moments” will Emma and other autistic kids have to endure before teachers realize that spoken language is not the ONLY manifestation of intelligence?

    • THIS is what frustrates me so! I am a special needs teacher in a resource room and also a mom. My son is currently attending a private school because the self-contained public school classroom has the cross-categorical room (also commonly known as “the Autistic room” by people at my school) which is CRAP! They don’t teach anything except compliance which sickens me. When I make suggestions of what I feel and what I’ve read Autistic people feel would be helpful to the students they look at me liked I’m the one who is oblivious. In fact someone said to me, I know it must be frustrating trying to cure your child when nothing seems to work. This is when I had brought up RPM training. I never said anything about curing anyone. I just want to help my son and others to communicate!!! UGH SO FRUSTRATING. So I am working on a new life plan. Learn RPM, quit public school, change peoples minds, teach others RPM. I’m not sure how I’m going to do that but I am! I’ve been thinking of this for a few months. My thinking has really shifted in the last year, reading blogs, books and all the info I can from the real experts, people like Emma and your family. People who are sharing their experiences. Thank you for educating me so I can educate others.

  7. lilytigerheart

    This broke my heart. I just knew what was coming and started crying…for Emma and all the other autistic children who have had lost “picture day moments.” I really wish people would wake up and realize that speech is NOT the only way these children communicate and show their intelligence!

  8. Deeply sorry to read this.

  9. Oh, I’m so sorry, Ariane and Richard. I feel your pain–I really do. Why would they assume that Emma didn’t want her picture taken? They would not make that assumption of another child. My child is nonverbal, too, and we have experienced similar disappointments, in spite of my son being in a special needs school. It makes you realise how ingrained people’s prejudicies are, especially among the people who think they understand autism and especially among those who fancy themselves “experts”. Emma’s disappointment must be tenfold that of any other child. Not having her picture taken is no small thing, because it is symptomatic of a much, much bigger thing, and I am so sorry this has happened.

  10. Stephanie James

    This is so heartbreaking and so unacceptable. I am wondering if Emma has a close connection/support with one adult at the school – a para, a related svc staff, another teacher, even a secretary….someone whom you and Richard can communicate directly with and they can communicate with you directly so there are no gaps in the school’s lack of ability to communicate with Emma. Sometimes it takes that one person whom everyone can connect with and who can help make the necessary connections to make sure things like this don’t happen. This lack of effective communication is the school’s lack of providing FAPE in not choosing to understand how Emma communicates. Totally unacceptable! She deserves so much better.

  11. So sorry, Em.
    “There will come a day…”
    In the meantime, there is usually a MAKE-UP PICTURE DAY scheduled for ALL the people the photographers screwed up (or screwed over). I hope this is the case at your school. We definitely want a picture of you this year – the year you broke the mold and freed the souls of thousands!!
    Lots and lots of love,
    Wendy and Nick

  12. I feel like crying or yelling at somebody and I don’t even know you personally. I just don’t get why they didn’t take a minute to dig a tiny bit deeper and figure this out. It’s not like they don’t know there are communication challenges. Geeze.

    I don’t know if this would add extra work for you – but THEY dropped the ball, big time. THEY need to arrange with the photographer to get her individual picture taken at no cost to you. Shoot – give me the phone number and I’ll call them myself!

  13. I volunteered to help out on picture day at my sons’ school. Every child had their picture taken. We had a card for everyone: K – 5 for EVERY class including the learning support classroom. There was a second ‘retake’ day for kids and teachers who were out. Every parent got 4 proofs from which to pick from and place an order. I think this is the right way to do picture day.

  14. I’m still crying…I just can’t believe that this happened, that no one thought to look in her backpack or telephone you or anything, and supposedly they all know that Emma doesn’t communicate with spoken language!

    One very sad Granma

  15. I was so saddened to read your post, Ariane..and sad for Emma. Over the years that has happened on occasion for us. I agree with “Palomino”, that there is a re-take day, and ask that Emma be the FIRST student to have it done to avoid the anxiety. Somehow, I feel karma may come back to those who were not intentionally thoughtless; but just possibly some day, it might be their son, daughter, niece, nephew or grandchild, having the same experience and maybe they will reflect back to Emma as they rail against what happened to THEIR family member. xoxo

  16. This hurts my heart. Sigh. Poor Emma. My single biggest fear about my son’s future is that people won’t take the time to understand him. I NEED them to go above and beyond. I simply can’t always be there. I am so sorry about this. This shouldn’t have happened.

  17. My many moments strung into years…it doesn’t crush me anymore, until I hear a story like this. Then I am transported back in time.

  18. This is so so so awful. I can’t even find the words to explain how deeply saddened I was to read this. Emma is the sweetest, most empathetic, and most forgiving child I’ve ever met. The fact that mere negligence and utter lack of communication on her teaching staff’s behalf has led to her heartache is simply unacceptable. We can’t keep our kids from all the inevitable pain they will experience over the course of a lifetime but it’s all of the avoidable moments like this that we strive to protect them from with every last ounce of our energy. I can’t imagine how difficult this has been for Emma to endure but please know I am here to help however possible. If there’s a makeup location or if I can offer to drive her to the photographer’s studio, I will absolutely volunteer without hesitation. Let’s get Emma her photo!

  19. All the effort that you have put in to try to get Emma’s teachers to understand, and this still happens. It’s tragic and heart-rendingly sad. What will it take for these people to grasp how to communicate with Emma?

  20. This breaks my heart. So what do we do to stop these picture day moments from happening? I wish I had a magic wand and could make all this right. There is an autistic non verbal consultant I met who has blazed a trail for our daughters…her name is Sue Rubin. Perhaps her story will resonate with Emma. Sue now types independently and explains in her website how she overcame many challenges. I’m sorry this happened Emma. Will you take a picture on make-up day?

  21. {Growling}

    This makes me just stabby. Because I can’t even count the number of “picture day moments” I’ve had, where either what I was trying to communicate as a problem wasn’t understood, or the adults in the situation didn’t communicate and the results somehow wound up being my fault.

    Hugs, Emma. I know how you feel. 😦

  22. Also, shouldn’t the photographer have had a list of the families who’d registered and paid online, and therefore the number of kids he should have seen that day, and send someone to check for anyone who hasn’t turned up when they were supposed to?

    Like that’s just *incredibly basic* management of moderate-to-large numbers of confused and overwhelmed people who you’re providing an individual service to. (I’ve got actors who have to be sent to fittings, or recitalists being sent onstage one after another in a competition. You have a list. You check them off the list as they show up and as they get done. You *look* for people who your list says should be there but aren’t.)

  23. This reminds me of a poignant short story that is worth reading, titled “Eleven”, by Sandra Cisneros. Things seemingly insignificant to others (especially authority figures) are not little to us. Small mix ups and “injustices” are labeled by others as trivial and unworthy of our continued concern. But such trivialization just adds to the sense of being silenced and misunderstood.

  24. OK, this was a seriously sad story. Everyone failed her. The aides (who should have figured out she wanted her picture taken because she as anxious) the photography place (who had your order) and the school itself (who should take everyone’s picture to avoid situations like this).

  25. Emma I apologize. I an so sorry. I was not at the site on Monday and I am lost for words. How can I make it up to you?

  26. Oh that is so sad. It want take away from what has happened but I hope Emma gets a chance to have her photo portrait done by a photographer soon. Her own special moment. Ros has lots of those picture days moments too. Even had picture years because it was assumed her frequent toileting was a “behavior” and in desperation she attacked people and hurt herself when she wasn’t “allowed ” to go at school. Banned from a holiday program It was a medication side effect. It went as far as being treated as OCD for a while before it was worked out. If only others understood “behaviors” are a way of communicating when you can’t talk.

  27. How frustrating. Hope this revealed miscommunication leads to less miscommunications in the future, big hugs xoxo

  28. Marie Brennan

    There should be a retake day for kids who were absent, I hope you get your picture taken Emma. That was just not fair!

  29. Ariane, do I have your permission to repost this? I’d like to put it on my Facebook page and ask people to re post, and tweet it out to the world. This message desperately needs to reach as many as possible. I would encourage you to submit it to HuffPost as well. Much love to you and Emma from us. I will email you soon. Xoxo

    • Dearest Ang – you have once again read my mind. I have posted this on Huffington Post, not because I want to upset or hurt anyone at her school, but because of what this represents and means for so many of our kids.
      As far as sharing, go for it. Sending you love, dearest Ang. XX How’s Risa doing? So glad the surgery is behind all of you and I’m hoping she’s recovering quickly!

  30. Thanks so much to all of you for your kind comments. I’m hoping the school will find a way for her to have her picture taken at a later date.

  31. This brings tears to my eyes. It seems so sad that at times there are those who are somewhat contemptuous towards those with differences. I find it difficult to understand that nobody at Emma’s school figured out whether or not she was to have her photo taken. The assumption that you and she were opting not to have her photo taken seems to me to be a very lazy and dismissive attitude on the part of the staff. And it would seem that if they are aware that verbal communication isn’t her primary form or communication, than any behavior, desire, indication, ripple which arouses any of their senses, should alert them to take heed. And if they are the ones who are incapable of learning to attempt to communicate with Emma, then they are the ones who have failed.

    We all learn differently. Teachers are supposed to be enamored with connecting with their subjects and sharing their gifts. When they lose the desire to connect, or they feel as though they should only parrot to an audience with no responsibility for the audience’s retention or growth, then they are no longer teachers but dictators. If it takes someone inspiring to reawaken a teacher, to show them what what amazing accomplishments can be achieved through education and understanding, then they need to look to people like Helen Keller or Judy Endow and the countless people with disabilities who continue to flourish today despite the obstacles which stand in their way.

    I’m sorry that there are still small minded people everywhere. I run into them as well, and they make me cry now and then too. But then I pick myself up, and keep marching on. If we didn’t have those who made things more difficult for us (and by “us” I mean anybody and everybody), then we wouldn’t have the challenges which do make us stronger. If I lived near you, i would do a personal photo shoot just for Emma so she could have her own photos. But I understand she probably wanted the same ones as the rest of the students. I do hope that the school remedies the situation and lets you know how they will do their best to keep it from happening again.

  32. thank you Arianne.
    here is another example of “picture day moment”. Only our moment has lasted for three years.
    My daughter gets hysterical EVERY TIME the school is finished or the moment I get home and walk through the front door.
    There are 20-30 minutes of hell to follow. The school keep saying that the problem will disappear in the future. The child is four years old now.

    After reading “Picture Day Moments” I made a decision to try to talk to my daughter about this but because her language skill is quite poor I tried to give her two option for my every question.

    Q: Do you like school? – YES/NO A: YES
    Q: Do you like your teacher? – NO/YES A: YES
    Q: Do you love your mummy? – YES/NO A: YES
    Q: Do you like mummy to pick you up after school? – NO/YES A: NO!!!
    Q: Do you want me to stay with you at school? – YES/NO A: YES!YES!

    light bulb!

    I had to talk to my child about school and the fact that I am not allowed to be at school with her all the time. So today when I picked her up the first thing I said to my daughter is that I miss her so much and I want a big big hug and that I am so sorry that I am not allowed at school.

    There was NO DRAMA. She said: “OK, lets go”.

    Dear Arianne your blog is a VERY VERY PRACTICAL thing…not sure if you realise this..
    I advice to newly diagnosed parents to read the blog and to come back here when your child is older. This is a treasure chest!

    • Thank you so much Marina. It fills me with joy that something I write might help others. I really appreciate your sharing this and love the choices you gave. That’s how I began with Emma, who has waited so patiently for me to find a way for her to communicate with me, that I can understand.

  33. Our school always had a picture “retake” day for those whose pictures did not turn out well. Hopefully, she’ll be able to participate in this. Sounds like maybe you should find a school with teachers who are better able to relate to her needs. I’m sorry this happened to her. She is a beautiful little girl.

  34. Oops I didn’t mean to post as a reply to Richard.

    • Hi Kari,
      I don’t have the ability to move your comment, but if you want, you could copy and paste it and I can delete the one that is “reply” to Richard’s after you’ve done so.
      And PS Thank you for such a great comment! I want more people trained in RPM as well. It’s so frustrating to see her write the most wonderfully insightful, thoughtful, interesting things and then know that she cannot do this at her school with anyone there yet.

  35. Sheila Marano

    Do you not have a “communication folder” that goes back and forth daily between home and school? This can/does eliminate many misunderstandings between parties, and offers a significant stress reducer to all invested personalities.

    • We tried a communication book…. It would get left behind at school, or the appropriate person didn’t see it for some reason….. Solution for now is cellphone messages….. For now, I know when to ask Zack if there is a letter or something from school, and the teacher knows to ask him if the relevant document or whatever doesn’t automatically get to her. I am hoping that gives him enough independance to do what he can himself, but also a bit of a safety net so we don’t have too many picture day moments….

  36. Oh Emma! That’s really unacceptable of them & a failure of every single adult at the school.

    And retake day just isn’t the same, though at least it is a chance for school pictures. But it isn’t the same.

    and…picture day moments. yeah. that’s pretty much half my interactions sometimes.

  37. Hey everyone, once again thanks so much for all your love and concern. I have some good news to report. Ariane and I spoke to the principal and assistant principal at her school yesterday and while the photographer won’t come back to Emma’s school for a retake, there is another school we can go to that hasn’t had their pictures taken yet. So a week from tmw we will take Emma to get her picture taken in the pretty red dress she picked out! Thanks to Ronnie and Susan, for making this happen!

  38. Hi Ariane – may I link to this post in some of the LinkedIn autism groups I belong to? I’d like to draw attention to this kind of issue for the various autism-related-professionals on there that are interested in making a difference. Thanks!

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  40. Helen Thurlow

    Hi Ariane, foremost as a mother my heart goes out to you. As a school counsellor thank you for bringing a greater awareness of the everyday challenges for our autistic children and their parents.

  41. It’s a heartbreaking story! But as the author said, in the larger scheme of things, it might not have mattered so much. If I may offer some consolation as a professional in the field for more than 38 years, autistic children are frustrated many times a day, too many, many would say, but they also get over (forget about) it relatively easily, especially if there are other enticing distractions. In that sense it is a blessing. Frustration tolerance training often times makes their life happier, in a Zen way. It sounded like Emma had forgotten about the incident by the time she got home with mom. But we as adults still feel ‘for’ her. Indeed, the school staff should have been more sensitive. But we all know those ‘should have’ hindsights. Taking care of one autistic child’s needs in the family is hard enough, but try five on a day-in-and-day-out basis. That’s why staff burn out used to be a huge problem for me. And when I was in the trenches, I slipped up sometimes too (shh, don’t tell anybody!)

    • Not to be a wet blanket or anything…… But my nine year old is very good about NOT forgetting things like this….. Often we will hear nothing for weeks, or even months about a moment like this……. Then in the most unusual time and place (according to my version of logic that is) he will say something about it. Maybe we fall into the trap of thinking because it is not being discussed, it has been forgotten about…. When really it has just been filed away for reconsideration at another time.

    • hi David,
      The author (me) also said in context to that bit about in the larger scheme of things, “but you see, this is just one example of what occurs regularly for our kids who do not speak, or, as is the case with my daughter, cannot say what she necessarily intends.

      There are dozens and dozens of “picture day” moments. Little things where she is misunderstood, cannot initiate a complaint, is not asked the right questions, cannot “speak up”, cannot protest with a reason why, instead she is thought to have “behaviors” when she tries to leave the room.”

      It is for that reason that I wrote the post.

      I hope that as you are “a professional in the field for more than 38 years” you would not be so dismissive of any child’s upsets. It is very convenient to believe that a particular group of people get upset often and that therefore it does not hurt them terribly or that with a little distraction all will be well. Sometimes people do not want to sit with the discomfort of a situation because it is too painful and so we decide to believe things to make ourselves feel better, however that does nothing to help the people who are being continuously hurt.

      There are a great many autistics, now adults, who will tell you about thousands and thousands of moments, just like the one I’ve described, that they’ve endured over a lifetime and very few of them will say – thankfully I’m easily distracted.

      • I do feel for your concern. If indeed there are so many frustrating moments occurring, it would warrant a revision of the IEP. I would define these moments, set up a consistent procedure to reduce them with a timeline, and count the incidents to measure progress. This would help the staff also to focus on the issue as an IEP goal, and would allow you to request changes in case the situation does not improve. And we all hope, Emma will be happier going to school.

        • David, you continue to want to make this about a specific incidence and about a specific child, when the point of this is that these types of things occur all the time for a great many. Until people in the profession, such as yourself, are willing to chart and document your own behavior in response to another’s upset, little will change. Fortunately there are a great many truly amazing people who are willing to do just that.
          Oh look there’s a squirrel!
          (Did it work?) 🙂

    • It truly seems like staff burn out is an issue when not a one of them realized that behaviour is communication.

      I hate to burst your expert bubble but while autistic children are frustrated often what are you basing your notion that they are forgotten easily on? You ever contemplate that rather than forgetting some new frustration comes along?

      I could list almost every frustration large and small especially those caused by expert types from the time my continuous memory starts. Not that I hold grudges but every autistic friend I have has a similar ability.

      I don’t mean to be rude or maybe I do because this is exactly the sort of expert opinion where the needs of any one kid are seen in context to the needs of those who are supposed to help them.

      I am an adult and have been having a hard time and guess what people do this to autistic adults too. The burnout of well paid people, the hard time understanding me, how horrible it is if I won’t talk to someone making the same mistake for the 20th time… is framed as a way in which I make it hard for staff,

      I am glad you are out of the trenches now as long as you are not teaching anyone to be in them because you have a lot to learn.

      Enticing distractions that are distracting enough that people could think they could lure us from a deep hurt. Yeah right.

      I know autism personally, academically and having worked in the field (although most of the autistic kids I worked with were volunteer as I tended to work with more medically disabled kids so the kids with autism were the children of people I met and I would go and visit and be a bridge at best.

      How about you actually listen to some kids with autism or adults with autism and rethink all the trivial ways of dismissing experience and blowing it away.

      • Everybody is an expert with great conviction when it comes to autism.

        • Why are you being two people in one thread. Some people come by their expertise more legitimately than others and even then we would know better than to assume what we know by being us while valuable over and over is always going to be so.

        • I’m not sure what happened to the “everybody’s an expert comment” but my response to that is I respect experts until they disregard information that is valuable to their suppositions.

          Prior to the advent of technology, it was very difficult to find information from the autistic point of view. If you were lucky, you found books by people like Temple Grandin, John Elder Robison, etc., basically people who were able to communicate in a way that neurotypicals can easily understand.

          Researchers have had to guess/postulate/theorize based on external evidence about what was going on for autistic people, especially those who were unable to communicate in a way they could understand. This has changed. Autistic adults are able to communicate ACTUAL autistic experiences. Those who cannot are able to type. Children are able to communicate to their parents even if they can’t speak.

          If an “expert” ignores, discounts, or otherwise disregards information from those they say they are experts on, how are they truly experts? An autistic individual is an expert on their experience. An expert who refuses to consider information because it does not fit what they “know” does not deserve attention, and loses my respect.

    • Speaking in my experience as an autistic person: We seem to “get over it” more quickly because we are used to being disregarded, disrespected, and having our wants and needs ignored. Someone making no effort to actually understand what we’re trying to communicate and what we want? For you, that’s appallingly rude. For us, it’s Tuesday.

      You should not mistake being used to such mistreatment for being okay with it. That a woman in a male-dominated field seems to let sexist remarks roll of her back doesn’t mean those remarks don’t hurt. It doesn’t mean those remarks don’t do real and lasting damage to her self-image (see stereotype threat). Likewise, that we bounce back quickly after yet another microaggression doesn’t mean doesn’t hurt. And it doesn’t mean that such mistreatment doesn’t do real and lasting damage to our self-image.

      And it sure as heck doesn’t mean that it’s Zen training. It means we’re getting the message that we don’t matter, that our needs our secondary to your wants, and that our wants are secondary to your routine. Is that really the message you want to be teaching the kids you work with?

  42. Dr. David – the quote you refer to continues on “it’s just one incident, something relatively small and in the grand scheme of things not particularly important, but you see, THIS IS JUST ONE EXAMPLE OF WHAT OCCURS REGULARLY for our kids” (my emphasis). It’s true – managing a classroom of multiple kids is hard. But instead of explaining it away, we need to recognize that it’s not just burn-out, but a lack of empathy and an inability of neurotypicals (of which I am one) to understand. The author mentions that the staff have NO problem calling her when they are upset (by Emma biting), but if Emma’s upset doesn’t upset THEM, they DON’T call. That’s not ok. It’s symptomatic of a problem.

    And to assume that autistic children “get over (forget about) it relatively easily”… isn’t correct. I ask you to read autistic adult blogs. These things are NOT forgotten easily, especially when they happen on an ongoing basis. And as a neurotypical person, when a disappointmnet like this happens, you DON’T forget it. Think back to your own childhood. I’m sure there are things that YOUR parents thought was insignificant and that you’d get over, but to YOU, are a hurt/disappointment that you carried with you for a long time. To assume a person who is autistic doesn’t have the same experience is irresponsible.

    A child dresses up especially, tries unsuccessfully to do what she IS SUPPOSED TO DO on picture day, is turned back again and again, and that’s “frustration tolerance training”? Autistic people are not pets, they don’t react like the dogs in the movie up to “enticing distractions”. They have emotions. Blowing off their continuously frustrating experiences like it’s no big thing is aweful.

    • So Santa never came last night. Do we dwell on it? blame Santa? or teach the child to move on? It’s not so traumatic if the child also gets love and attention from other sources than missing a present from Santa. No excuse for the staff’s negligence here. But for the child’s sake, learning how to handle frustration and move on to positive things is more beneficial.

      • Please click on the resources tab of this blog and read some of the Blogs & Blog Posts Written by Non-Speaking Autistics. They’re quite an eye-opener.
        ———-
        In reference to your reply, I believe this is a “straw man” arguement.
        Santa isn’t real.
        – Institutionalizes marginalization is.
        Handling frustration is important.
        – Recognizing that there is a culture of the ongoing dismissal of thoughts, needs, experiences of autistic individuals and trying to equate them to “no big deal” every day frustrations is not the same thing.

        I will not “move on” from the fact that when an autistic person has ongoing issues of being dismissed because they cannot communicate typically, it is brushed aside as “no big deal”, that people in whose care a child is for almost 40 hours a week is minor.

        If those who care for our children, if the institions who are responsible for teaching act like ongoing dismissal is OK, nothing will change. So yes, I’ll teach my child to deal with frustration. But I’ll be damned if I will let their needs be dismissed regularly. Which is what this post is about. It’s not about 1 day. It’s about a lifetime of being seen as less than, less important than.

      • Even if you teach the child to move on doing it effectively can’t come from the notion that autistic kids forget this stuff easily.

        Of course frustration has to be learned how to be handled but not by people who cannot see how frustrating things are or are confused about the whole point here that picture day is a single huge frustration that stands for the hundreds of less noted one every blooming day.

        Everyone learns to handle frustration, If you have autism that ability might vary. I am usually a nice person to have around as when my stress maxes out I implode quietly but that is not a given.

        It is the attitude that causes more trauma than any individual event.

        Autistic children often get to hear what it thought of them as people think they don’t understand. As an adult even though it is on the always front page of my electronic chart that my ability to speak might flee or slow down people expound at great lengths and to their inevitable embarrassment about me.

        The only way you teach any child not just one with autism is with respect for what goes with being a child. If you are taking on the care of autistic kids without any clear sense of what it is to live with it then one would hope people pay attention and not blunder around thinking they know things they are horrifically wrong about.

        Each child is unique whatever their label and truly knowing them starts with knowing your adulthood, your degree, your job, your power over them is if anything a barrier. Your only hope of being useful at all is to start fresh with every kid and be trustworthy and not think the teaching is all from the adult side because kids are often smarter than us.

        Looking after children is a huge privilege. It should be viewed as such and not compared to trenches or as some sort of lopsided deal.

  43. This Dr. David as people seem to be calling you is what I wrote about this blog and how representative it was of the current frustrations of life now and all the way back then. You probably won’t learn much from it as if all those years in the field never made you question why would a blog but for what it is worth:

    http://gareeth.wordpress.com/2014/03/08/a-painfully-analogous-blog-description/

    I do thank you though as plans for my own Phd kept getting sidetracked for once again making me think someone with one should have a clue one day about being autistic not just all the strange misconceptions that get taught or the weird spin the world puts on where the problem lies.

    • The most difficult thing I have come across in all of my dealings with persons in the medical and psychological fields is that it’s a rarity for any of them to understand what it’s like for their patients to live with the ailments, conditions and/or situations in which the professionals have dedicated their lives to working. Unless someone lives with a condition, it’s close to impossible to understand it. One cannot learn to drive by reading about it; it has to be experienced. At the very least, one can attempt to empathize, but unless one has truly experienced an analogous experience, understanding is a pipe-dream. Professionals can theorize and philosophize, but the true professionals are those who are the afflicted with their support-staff as those who spend their lives opening their lives up to them, not closing doors on them and expecting them to conform, fit into tidy explanations, and certainly not those who would ever get “burnt out”; the real professionals don’t have that option. The world would be better off to have someone like you practicing who at least understands and empathizes rather than the majority who think they know it all and are afraid to admit when they don’t and listen to the real authorities.

      • You are so right.

        I have had doctors who can listen. Any sensible GP knows he will never know enough about every one of my conditions (overachiever in the field of body break down it seems) than I do. They are not all sensible.

        I came from physio. I wound up in tears because the physio was trying to tell me things I have known for 30 year while not trying hard to understand where things do break down for me.

  44. I appreciate your concern of my health and your diagnosis of me. The reference to Viagara was ingenious. And thank you for saying my name right.

  45. I am so sorry for what happened, my heart cries for our kids who can’t communicate clearly and who are thought to not have feelings or desires. However, I am so thankful when I come across someone who thinks as you do. It encourages me more to push others to talk to their school and teachers about our children and how they DO function and what helps them most.

  46. Pingback: When an “expert” acts like they know everything, run the other way | Spectrum Perspectives

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