Wednesday, July 31, 2013

Dealing With Family's Clueless Questions


Dear Ibby,

First of all, I'd like to say I am a big fan of your work and you first came to my attention when the Thinking Person's Guide to Autism published your essay "A Person is Not a Function."

I have an almost 4 year-old little boy on the spectrum. He was officially diagnosed a little over a year ago. He has a consistent vocabulary of about 8 to 10 words and seems to be really learning a lot at school and enjoying himself. It's very clear he understands a lot of what is going on. We have our bumpy days, (as does everybody), but overall life is very good.

I'm actually writing b/c I need advice for how to handle some neurotypical people in our life. I feel like most family members (on both sides of the family) are very fixated on the "talking thing.' I hear a lot of "is he talking more?" "When will he start talking more?" Every time I share one of his successes at school or home I hear "Does this mean he'll talk more?"

I don't want to make it seem like I'm anti-talking or that I've completely ruled it out for my son's future, but I've broadened my ideas of communication so that I don't see lack of talking as lack of success. How can I get our family on that same page? I feel like they still have a lot of pity and fear feelings around disabilities/differences that they need to work through.

I've tried leading this conversation gently "You might like this book" "You might like this documentary" "He might never grow up to be a talker and if he doesn't that's okay." Nothing really seems to sink in for long. They slip back into "talking is the default way to communicate/be" very quickly.

They are all long distance and don't get to see the day to day triumphs and progress. Do I give them more time to process because they are more removed? Do I keep on the gentle path? They (usually) don't talk about this stuff in front of my son, but every time they talk this way it hurts me (even though I realize this is not about me) and leaves me with the feeling they can't fully accept him b/c they are holding out for something "better." Do I just flat out start telling them that this is hurtful?

I'm usually someone who tries to avoid confrontation, but I'm starting to feel that it might have to be done.

You always seem to deal with everyone and their questions with such wisdom and compassion. Any advice in this situation?

Thanks for everything you do,
Just call me

"Dealing with Family Matters"

Dear Dealing with Family Matters,

(This took me ages and ages to answer, not least because I could fully answer one layer but not the other, or not to my satisfaction. Now I have been to Syracuse and can answer better along both axes. Thank you so much for your patience, DWFM!)

Thank you so much for writing, and for trusting me with this problem.  I have been thinking about it for ages, and it is a very real problem.  I will speak directly to you, and I also believe you have many unseen friends out there experiencing almost exactly the same thing, who will relate to you.  Maybe they will answer this post and you can become friends.  Support of people who know first-hand what you’re talking about is a wonderful thing.  I speak to you all, really.

What I will do is speak from my brain and experiences and observations and also from my heart, and start with the adage my wise friend Souci taught me when I was a whelp: “Take what you need, and leave the rest.”

The first thing I want to say is that I was flapping when your focus of sight was about how often they mostly did not do this in front of your son, showing both that you are thinking that if they did, he would notice and care (instead of being incompetent) and also that you think his welfare is utmost, because you are an awesome parent.  And you are trying to be gentle with your family and give them the benefit of the doubt.  That’s actually a really good thing too.  I’ll say more.

When you say it is not about you, I want to say it does get to be about you, sometimes, because you are a person and you are hurting.  That is reason enough, but there is more.  So.  This: you are clearly not the kind of person that makes everything be all about you as a general characteristic, which buys you more it-gets-to-be-about-you-for-a-change-now.  For one thing, none of the text in your letter was lengthy declarative proclamations on the topic of what a giving giver you are, always giving, never a thought for yourself (a specific type of language use which I have noticed in my travels seems almost invariably to be a kind of code, a type of opposite-speak bafflingly concomitant with self-involved action sequences).

Sometimes people like you who actually are giving people who think of others first need to hear a logical reordering argument in order to believe that it is OK to defend their own selves from hurt.  I will use a quick argument from analogy in the form of a potentially random sounding metaphor.  I trust you will see what I am doing right away, so I will keep it short and not belabor it.  Here goes:

When people hurt my mother, especially relatives, I always notice (even though she is fabulous at hiding it, according to the rest of the world) and feel it keenly, and am greatly distressed.  The less I can do about it, the worse I feel.

There.  I believe we have incontrovertibly established that it is OK for you to deal with the issue even though you are the primary person being hurt by their words at this time.  :)

(And I stopped writing here for a long while, because I knew I could only really answer half the question, and now I will continue…)

There are two axes of what to do. One is internal and one is external. The external I learned more about at Syracuse ICI Summer Institute (where I think everyone should go) (and I don't think you have to wait 'til summer to check them out) and hence can now finish this post.

Internally, I can only hope this information helps you to gird your loins, and it is this. All the people are brainwashed into believing that talking is the only kind of communication that counts. This is particularly true in the relatively recent times, when ABA and ABA derivative peddlers made sure everyone heard that they and what they sell are the only “research-based” thing on the planet that could ever help anyone have a life, and the only kind of life was a life of yimmer-yammer, and it was patently impossible to learn to yimmer-yammer if one did not do so prior to the age of five, at which time one turned into a pumpkin, because one’s parents were woefully-scientifically-ignorant-read-negligent, and you know, since it takes a village, any parent allowed to be that ignorant in this the famous information age must have really ignorant and callous friends and relations.
Tracy Thresher and Larry Bissonnette stand on either side of a giant green sign that reads: "Not being able to speak is not the same as not having anything to say - Rosemary Crossley."

A great deal of time and money as well as academic and political power and savvy were spent trying to make sure this would become engrained in our public imagination as “a well known fact.”  I think the reader will recognize that all that stuff about ABA and the age of 5 and so forth doesn’t even sound funny or woo.  It sounds true, and fitting, kind of like we ought to brush our teeth.

It is not, in reality, true in the same way that it is true we ought to brush our teeth. It is true in a way much more analogous to the way in which it is true that we ought to own an imitation paramilitary SUV in order to be more safe on the roads. (In other words, not true.)

Your family more than likely does not mean to hurt you when it parrots back to you advertising about how those imitation paramilitary SUVs are really safer for your kids, because that little foreign econo-job you are driving would squash like a bug they just know it. A lot of thought and money went into making sure they would believe what they believe, or believe they know what they believe they know. And also your little econo-job is much safer, PS; you checked when you bought it. But that will never be allowed to be the first few hits on their Google search, or Google goes under.

What I think your family actually means to do, most of the time, with this, is show caring. They are saying something like this: I care, and I want to show that I care by showing that I Googled stuff, because in my imagination you will notice that means I was thinking of you. However, I did not think this through and realize that because it is your life and the life of your own child, you probably have much more in depth and relevant knowledge; and maybe a more fitting and useful concept of a way for me to show caring would be to listen, or give you cake and tea.  Tea!

Now: before I get on to the second part about their actual education, I want to talk about what to do about this part, which is what to do about how they are hurting your feelings.

It depends on your personal style, and what you feel comfortable doing and saying, and what you know of them and who they are.  Just one thing before I start saying this stuff.  I noticed you think of all of this as a confrontation, and it might help you if you reorganize it in your head as another thing which is not confrontation but rather the offering of information, because that is also really real: you are giving information to people, and that is not a thing which is a bad thing. It is a doable thing, a helpful thing, and useful.  OK.

One thing you could do would be to really tell them what you told me. It hurts. It hurts you. You could stop it there, as a separate issue from the educational issue, because if you imagine that your family does not want to hurt you or your child, you can say this. You can imagine that they do not know they hurt you and would want to know so that they can stop. Explain your feelings to them and let them be there for you in ways they cannot if they do not know it’s needed.

Another thing you can do if it is not in your family culture to talk about hurt feelings and you don’t want to do the educational features right now is cut if off at the knees.  You can say a thing like, that is all, I no longer wish to discuss anything having to do with language, there will be no linguistic discussion in my house.  (Sometimes this makes people say, But why? And you might then develop a situation where you go back to the first thing…so it might be an opening to an new epoch of family culture on emo-speak…)

A third thing you could do is launch straight into educational mode, not gently, as you have said that does not work, but as Captain Super Professor! Able To Assist The Misguided At A Moment’s Notice! The Minute They Accidentally Utter Some Ignorant Thing!  This can be kind of empowering and may tend to put you in a good mood.  It is kind of my lifestyle. I mean I am a little bit gentle in that I am in a good mood most of the time, but I am not, you know, difficult to read or understand. I do not say, you might like this movie some day, I say: This! Movie! Here! ‘Tis The One For You Now! (pressing an actual copy of Wretches and Jabberers into your hand)….

Which does bring me to education.

That is the second prong and the one I didn’t feel adequate to answer about until I got back from Syracuse having met a wide variety of more people than I already knew, who live good, successful lives without talking, or talking much. So I will list now a bunch of people I know in case you want to go the Totally Educational route.  Which I hope you do.  And I realize I don’t have to write as much about that as I had thought, because they have done so. (And you can show them everything I have to say about Eric, who doesn’t bother talking or writing much but can save my life in the sea, and lives exactly as he likes.) There is no problem about my inadequacy as a non-speaker because the non-speakers I know can speak volumes about it! Volumes and DVDs, youtube clips and blogs and more!

Please write back and let me know how everything goes.

Love,
Ib

OK so the List starts here just with some people who have produced media and I personally know:

Amy Sequenzia
DJ Savarese
Jamie Burke
Sue Rubin
Jenn Seybert
Mark Utter
Tracy Thresher
Larry Bissonette
Peyton Goddard

These people hardly talk if at all.  Many more of us move in and out of talking, like for example sometimes talking a lot and sometimes not at all. Let me know if you want the list of us and where we talk (or...something analogous) about that! 

PS Also, other readers please help with this, please list other resources you know to help educate DWFM's family.  Since that's just who I personally know, I know other people I know and don't know must know other people I don't know yet.  Such as Barb Rentenbach, I don't know her yet and she has a great book I'm hearing now! Thanks!

PPS And here's Ariane's resources that she shared below, in a proper link. Thanks Ariane!


30 comments:

  1. I get that a lot. Even from good friends who ought to know better by now. I do not speak to communicate. My fingers communicate. I am adult in very prestigious university. With out speaking. (Indication of success for normal people who do not understand joy is only important measure of success.)

    People mostly still insist on speech being necessary.

    I learn that so long as people agree not to take away my talking devices, I not argue with them. Let them think what they want. People who are worth talking to will listen to my fingers.

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  2. Ari thank you so much for commenting! I can't believe people still go around saying and thinking such tripe, gah! But how often do I wear noise cancelling earphones for the speech of them whose speech is the opposite of necessary for my joy!!

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  3. List of non-speaking Autistic resources: (I was going to list all I personally know about individually, but realized a more expeditious way is to send you the link where all the non-speaking Autistic resources I know of are first, so you won't even need to scroll down!) :) http://emmashopebook.com/resources/

    Also IBBY!! I love this. This is incredibly helpful and am now on a campaign to share and tweet it everywhere.

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    1. Thanks Ariane xxoo I put the url into the body so people can click it!

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  4. Beautiful post, Ibby. I am commenting as Anonymous because I don't "belong" to any of those other groups, but my name is Mary and I love what you've written. I plan to share it with parents and professionals!

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    1. Thank you so much Mary! It's lovely to meet you :) And thanks for sharing !!

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  5. As an autistic person, and as a sometimes-more-verbal-than-others person, and as a person who went to college for elementary ed and as a writer... this post is beautiful and awesome on every one of those levels. Thank you for it.

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    1. What a lovely compliment, Lydia xxoo !! I hope to see more of you around here :)

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  6. Everybody should have the right to get what they want, so communication for me has always been a priority and yes I have used evidence based methods like pecs to teach my 2 kids to get what they want. Being able to express themselves in pictures, that made sentences, made it easier for ME (yes its all about me) to understand and get to know what they liked. I was then able to take an interest in their interests, adapt my world to theirs and they let me in.
    Words came second to that. My son used the pictures to remember the words he *needed*. But he had been using the words he *wanted* like "emu" and counting and the alphabet. Pictures enabled him to get a drink, or a cookie or ask for the toilet as and when he decided that he would like the toilet in preference to the pull-ups he wore until he was almost 5. Spoken words became more powerful to him; not as powerful as written or typed words but powerful enough for him to become a very fluent vocal talker - on topics that interested him. We are very similar in that at age 44 and 15 respectively, we probably communicate best in writing but can manage quite well when we need to talk out loud. He especially enjoys quoting film scripts and is beside me quoting "Garfield 2" as I write.

    My daughter who is 2 years younger did not have any meaningful babble by the time she was 3. As a result she did not get state-funded speech-therapy and I was left to get her what I could using my own resources which at the time were limited to a state pension.
    I did the full 2 day pecs course myself and introduced communication to her using pictures at age 3. She was fluent within a couple of months and again I was able to understand and connect with her by following her interests. She was especially good at using complex picture combinations to get precisely what she wanted. Spoken words did not follow but the evidence based training I had been given taught me not to stress over this. And family were actually very impressed with her ability to use her pictures. In fact my daughter knew that even if I said no to her request for chocolate she could always get her way by using her pictures on her Granny or anyone basically who was visiting as they would be so flattered by my daughter's attention.

    I too was told that if someone wasn't speaking by Age X then they would never talk but I didn't fuss over it. I learned to focus on communication and the bond that comes from understanding over speech. More evidence based courses taught me that my daughters fluent picture communication was of equal if not greater value because she understood how to get what she wanted.
    I kept working at home on imitation games using the things that *she* loved and at Age 6 she began to name all her favourite toys. By Age 8 she was talking when she pointed to her pictures some of the time, but used pictures when we could not understand.
    At 14 she mostly talks in 3 word sentences but will revert to pictures if she cannot say the word she needs. We have our moments of extreme frustration when neither a word or a picture can be found but we persevere until we can work it out.
    When she sings she sings without words but she knows the tune and the sounds and it makes her happy.

    I've since found many published and replicated studies that completely refute the "if they don't talk by X" claim. I've also seen published and replicated studies that show that giving someone the means to communicate, by whatever means can actually lead to them beginning to talk.
    But denying augmentative or alternative means never leads to "the words coming" spontaneously. We have to prioritise communication as a right in my view and give everyone the ability to get what they want. If they in turn want to include us in their world then that is the privilege.

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    1. Ahhhhh yeah, Preach it! All KINDS of ways to communicate. Here is someone who wasn't having ANY of that Kool-Aid. :)

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  7. Oh, I love you, Ibby. You know exactly how to break these things down and explain them. Must share, must share!

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    1. Aw thanks Brenda :) I always love seeing you here, and you say such sweet things!

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  8. oh hell yes. hell. yes. thank you, ib. again.

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  9. And this is why I love RDI ( relationship development intervention)...as a mom with two kiddoes dx with Autism... The focus is helping our kids with decision making...RDI does NOT focus on talking...actually says to talk less and let the person THINK for themselves!!! The power in that is incredible!!!!!!!!!!! Google what is rdi!!!!!!!!!

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    1. Thinking...now I like the sound of thinking, it's a fave hobby! I will sure look into it Kathy, thanks for the tip! And thanks for coming!

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  10. ((Ibby)) Thank you for taking the time to break this down and answer so thoughtfully and sensitively and with so many layers. I am with Brenda and Ariane... and will be widely sharing this treasure you have offered.

    Love and appreciation for wonderful you!

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    1. ((Leah)) Love love love. I am so happy we will finally meet IRL xoxo.

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  11. Thanks Ibby, I was just going to try and recomment with a proper link! Since you took care of that for me, will now just retweet and reshare on FaceBook!!!

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  12. Thank you. Thank you to Dealing with Family Members for conveying something I struggle with for my little boy and to you Ibby for answering it so well. In tears so I can't write much more but.. wow. Thank you.

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    1. Thanks for coming Nicole and I agree thanks very much to the original poster who is clearly brave and awesome. I send you both much much love. xoxo

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  13. It's not the questions that bother me. It's the judgements. "Well, you know as parents, we can sometimes enable our children..." I will answer questions til I run out of breath. Teaching people who care enough to ask is not a burden to me. It's the ones who have determined negative things about me based on their limited knowledge that exhausts me.

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    1. Judgy McJudgersons that aren't even going to listen nohow (get ready for my scholarly professional opinion right here) they can just kiss my sweet patootie. I am with you on that one all the way. Fortunately that's not most folks. They're just really loud so it sometimes feels like it. I send you love and a patented patootie guard, just in case.

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  14. Day to day, my children and their various diagnoses do not phase me. Each day, we learn more about what makes them tick and how to help them deal with the outside world. Sure, we have our stressful moments, but those seem normal now.

    My biggest stresses come from family members making what I have always felt to be excuses for my children in order to rationalize their diagnoses. I am learning to bite my tongue and to turn to the communities of people who can help share in my children's successes and commiserate with their frustrations.

    These networks of strangers offer so much support and strength and I am forever grateful.

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    1. Ketomom you sound like a wonderful friend. I hope I see you round here some more :) xoxo I am betting there's a whole bunch of people saying that same thing about the support they get from YOU!

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  15. This is not about the talking (or lack of), but rather about how to redirect the fixated family members.

    I was recently successful at redirecting a family member who was overly concerned about my son's eye contact. She's brought it up on a few occassions and I tried the nice, indirect approach to no avail. The last time she brought it up, she mentioned how my son's cousin who also is Autistic has made so much progress in therapy and now has "normal" eye contact. I used that as a segue to say that yes, there are two camps in Autismland about eye contact and some people feel it is Very Important and others...not so much. And that we fall in the category of those who don't think eye conctact is all that important in the scheme of things and here's why...and I explained our philosophy to her.

    I think, like you said, she was trying to show her concern. She seemed happy to be "in the know" about this other camp of non-eye-lookers that she'd never even considered.

    I am so glad to have found your blog. I am getting so much out of reading it!
    Tracy

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    1. Awesome example!! I'm so glad you're here too! xoxoxo

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  16. There are plenty of deaf people that do not learn to speak using their mouths. However, they do learn sign and are able to communicate their needs well. That is all that matters.

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