A reminder for neurodiversity

2 Sep

Its been awhile since I blogged about neurodiversity and why it matters to me as a concept. Two recent events in my own life has made me more aware of that than usual.

In the first event, which concerns me directly, I have had to have a change in the medication I take that helps me regulate the manic depression (bipolar) I am diagnosed with. Nobody knows why I need to adjust my medication, only that it needs adjusting and so I shall shortly have Lamotrigine added to the medication regime I have to take.

How does that remind me about neurodiversity? It reminds me that the basic tenets of neurodiversity – respect for the individual differences those with different neurological makeups have – are my best way of being able to move forward in this world. More on this later.

In the second event, which occurred to some of my new family two days ago, myself, my partner and her two daughters – of whom the eldest (she is 4) is autistic – were shopping. Lily began to have a meltdown, a not unknown event in supermarkets for her and one for which we have a carefully worked out strategy. However, this time our strategy was rudely interrupted when a young woman began to shake her head, gawp openly at Lily and make tutting noises. She obviously felt Lily was a naughty child, rather than an autie child.

My partner and I decided that we had had enough of people judging Lily and so remonstrated with this woman. We both explained that Lily was autistic and unable at the age of four to regulate herself in high impact environments but we had to eat and anyway why should we exclude Lily from coming out with us as a family?

The woman waved her hand at us both in a casual dismissal and said we weren’t ‘controlling’ her properly. I smiled through gritted teeth and asked her what she knew about autism. She refused to answer. I asked her again and she walked off with another casual wave of dismissal. My partner’s by now angry shout of ‘shes autistic and a little girl, she can’t help herself’ following her down the aisle.

Of course, this isn’t the first time either one of us have been exposed to such ignorance and I doubt it will be the last. I’m also sure that many parents and autistic people reading this will be familiar with ‘the look’ that can come from such ignorant people who believe they have a divine right to judge others. But it again reminded me of neurodiversity and why I believe in its most basic tenet.

My partner said to me later that what had upset her so much was that Lily (and you can substitute her name for your own or your child’s) would be – to a certain degree either a lot or some – be dependant on the good will of society as she grew up.

People like the woman in Sainsburys are the ‘anti-neurodiversity’. They believe we can and should judge immediately, based on no other evidence than what we see and hear right in front of us. To me, neurodiversity should sit and think, consider the possibilities and act accordingly, based on a desire to help society in the belief that society should do the same for us.

By specifying a desire to include those with differing neurological disorders/disabilities/differences, neurodiversity helps me to feel secure in the world. It also means that I can feel secure in the world my children will inherit.

32 Responses to “A reminder for neurodiversity”

  1. TLPG September 2, 2010 at 11:06 #

    Oh that makes me so bloody mad!!

    If I’d seen that I would have blocked the woman concerned and told her to go back to you and your partner, Kev, and apologise. If she refused I would have told her outright that she was “a bigoted little witch who needs the check what year it is on the calendar! It’s 2010, not 1950!”

    Nice reminder, Kev. I did a page on my new blog on the general subject if you’re interested.

    http://philgluyas.wordpress.com

  2. Val September 2, 2010 at 15:09 #

    You wrote – “My partner said to me later that what had upset her so much was that Lily (and you can substitute her name for your own or your child’s) would be – to a certain degree either a lot or some – be dependant on the good will of society as she grew up.”

    Absolutely correct. Families of autism affected individuals are counting on a little charity and grace with regard to how their loved ones are received in public.

    Even if the woman you stood down seemed at ease with her behavior while in your presence, I am pretty sure she lost sleep over HER behavior…being so judgmental and not having complete knowledge with regard to what she was witnessing. I have had some battles on my own daughter’s behalf – in similar circumstance.

  3. vmgillen September 2, 2010 at 15:36 #

    The woman was a jerk… and her response was not specific to ASD. When faced with that sort of behaviour my response is fully dependent on what I had for breakfast, whether I slept well the night before, etc… raising my extra-ordinary children on a military base led to us constantly faving this sort of thing – and ultimately led to a forced discharge for my husband. And that was not only autism (“can’t you control that kid”) but also my oldest, with paraplegia (“soldiers will be reminded that they could face paraplegia if wounded”)

    All in all, this crap is also part of neurodiversity. But, I’d like to see the word “retarded” remain in active use: social retardation is a horrible affliction!

  4. Astrid September 2, 2010 at 17:09 #

    Great post, Kev. I am sorry you and your family had to face such bigoted bullcrap. In my opinion, it doesn’t even need to be explained that someone is autistici in order to explain the behavior, since that is none of a stranger’s business. If a child is disruptive and the parents are doing something “wrong” about it, in your opinion, stop and think rather than judge, indeed.

  5. Chelsea September 2, 2010 at 17:34 #

    I agree! It is nobody’s business but yours, your partners, and the people who work with Lily. Strangers only know you for one split second, which is not enough to judge whether or not a kid is naughty or autie. When I see kids tantruming in public, I just ignore it as there is nothing I can do to resolve it. I have suspected some people to be autistic because they mutter to themselves and stim in public. But I still have no business going over there and saying “you must be an autie. We have something in common!”

  6. R C September 2, 2010 at 18:22 #

    Timely reminder!

    Just to add though, it is never okay for an adult to glare at, shout at or otherwise rebuke or make to feel uncomfortable a parent or child for “acting up” in public whether or not that child is neuro-atypical. Children aren’t being “naughty” by having meltdowns even neurotypical children; they are acting in age appropriate ways to adult designed surroundings and it is adult privilege that says it’s okay to rebuke them for this.

    I’m sorry you had to deal with such a horrible situation.

  7. Tim September 2, 2010 at 19:32 #

    I used “He’s autistic, what’s your excuse?” once. Felt somewhat satisfying. I know people have the little cards they hand out to others explaining their child’s behavior. I see the point in doing that if those people seem open to being educated about autism, but it also feels like we’re justifying our kids’ existence or something.

    Sorry you had to deal with that woman.

  8. Craig Willoughby September 2, 2010 at 21:46 #

    Kev,
    Again, we find common ground, because I agree 100%. This has happened to me numerous times with my son. Tim, above, ninja’d me on my response to these idiots. And I agree…watching them gape and sputter, blushing, after I drop that line on them is most satisfying

  9. stanley seigler September 2, 2010 at 22:16 #

    [tim say] Sorry you had to deal with that woman

    that woman is society…get over/use to it, but never accept…otoh you cant cure stupidly…ignore the idiots…btw;

    i dont practice what i preach…amazing i havent had my lights punched out from getting into the glaring faces of idiots over 40 some years of you cant control your child…gave up long ago trying to explain/educate.

    stanley seigler

  10. livsparents September 3, 2010 at 01:25 #

    It’s really too bad we couldn’t suspend assault laws for a minute or so. Not to take her out with a few well placed fists, but surround her with three people talking very fast and loud in her face. Maybe a couple of strobe lights on high, an air horn and some smelling salts too. After a minute or two of having her senses overloaded, maybe she’d find a clue about autism…

  11. Clay September 3, 2010 at 05:27 #

    I’m really sorry that happened, but I also wonder of the effects if the little girl understood what her mother said while educating that person.

    Here’s another reminder for “neurodiversity”.

    http://cometscorner-clay.blogspot.com/2010/09/my-major-statement.html

    It’s sort of my “farewell address”.

  12. Phil Schwarz September 3, 2010 at 07:38 #

    Kev, that woman in Sainsbury’s is a poster-child for a diagnostic category sorely missing in both the DSM and the ICD: A-NOS — arsehole, not otherwise specified.
    ===
    Sainsbury’s… reminds me how much I miss Clare Sainsbury’s presence on the Internet, from the days years ago when she moderated (lucidly and compassionately) the autuniv-l listserv, for current, former, and prospective university students on the autism spectrum.

  13. David N. Andrews M. Ed., C. P. S. E. September 3, 2010 at 08:02 #

    @Kevin :”However, this time our strategy was rudely interrupted when a young woman began to shake her head, gawp openly at Lily and make tutting noises. She obviously felt Lily was a naughty child, rather than an autie child.

    My partner and I decided that we had had enough of people judging Lily and so remonstrated with this woman. We both explained that Lily was autistic and unable at the age of four to regulate herself in high impact environments but we had to eat and anyway why should we exclude Lily from coming out with us as a family?

    The woman waved her hand at us both in a casual dismissal and said we weren’t ‘controlling’ her properly. I smiled through gritted teeth and asked her what she knew about autism. She refused to answer. I asked her again and she walked off with another casual wave of dismissal.”

    Quoting the whole scenario because the woman making this snap judgment essentially made that scenario happen. What an arrogate piece of shit she is! Obviously, this woman is a shit and knows it (chances are that people have remonstrated with her before and said as much themselves): she obviously feels a need to disparage someone in preparation for making a downward social comparison in order to feel better about herself; clearly, she is also lazy, because she could find better ways to feel good about herself – she just can’t be bothered to make those adjustments to her attitudes for herself.

    @Stanley: “amazing i havent had my lights punched out from getting into the glaring faces of idiots over 40 some years of you cant control your child…gave up long ago trying to explain/educate.”

    Sad that people are so bloody ignorant that they have to make that sort of judgment on so wide a scale. You’re right, of course: the woman Kev and his partner had to deal with is extremely representative of society and it’s collective attitude towards people who are different or who have difficulties coping with certain sorts of situations. As for getting into those faces… and wanting to punch them, probably… I’d have supported you in doing so. I don’t like violence but sometimes… well, some folk just go round begging for a frigging good punch, don’t they? And if it’s good enough for those bollockses that support the JREC in Massachusetts, then it’s good enough for those pieces of shit that deign to stand in judgment over our autistic children when they find it hard to cope with sensorily highly-arousing situations.

    @Livsparents: “Not to take her out with a few well placed fists, but surround her with three people talking very fast and loud in her face. Maybe a couple of strobe lights on high, an air horn and some smelling salts too. After a minute or two of having her senses overloaded, maybe she’d find a clue about autism…”

    Damn – that’s even better than a knuckle-cure, isn’t it? Me likeeeeee!

  14. Donna September 4, 2010 at 00:40 #

    Sorry,

    My daughter has always been more important then a person standing in a grocery line with condescendion! Maybe when I first came online, reading forums like ANI and Autadv, I came to a conclusion that before I would explain the dxes of autism, with my child standing right next to me, I would wait til she wanted to talk about her autism. Explaining autistic behavior in a small child in a store with your child next to you, nulls and voids the autistic person or any person with any type of condition is how I see it.

    As to neurodiversity and acceptance and making sure society knows how much supports in whatever forum they are needed and that many things can be accomplished, and letting each person live the life they were meant to live, I will suggest a good read like

    Henry’s Sisters by Cathy Lamb
    Such a Pretty Face by Cathy Lamb

    The different dxes from the DSM are written about in a very positive manner on which any reader has aha moments when they can reflect what the author has written and might know someone by the characters in the book.

  15. Donna September 4, 2010 at 01:05 #

    @ Clay,

    Yup! So agree! Something you and some others taught me many years ago…

    “Disclosure” is always on a need to know basis and should only be disclosed to those who need to know and not some stranger in a check out line in the person’s presence! Yup, there goes my parent telling Tom, Dick and Harry about me and man I must have a lot of things wrong with me because they are doing that thing, saying that thing about me with me right here! What about self confidence and self esteem, and not to mention just letting me be viewed as a human being and not a dxes!!!

    I read you many years ago, when my little one was pre-school and it used to drive me crazy when I saw parents on forum doing this

    Susie, Proud mom of
    Nick (6) NT
    Jill (4) various dxes!

    So Not cool!

  16. Clay September 4, 2010 at 01:38 #

    Nice to hear from you again, “Donna”. I guess this child is still pre-school, and we don’t know if she was able to understand what was being said, or maybe didn’t hear it. Her mother would know that best.

    I think, (and hope), that you clicked on my blog’s link up there. I’ve laid it to rest now, but it will still be available, and I got in some “good ones” while I was doing it. Maybe bookmark it?

  17. stanley seigler September 4, 2010 at 03:45 #

    [donna say] My daughter has always been more important then a person standing in a grocery line with condescendion!

    still i learn, someone said…oh/my/sigh, how could i miss the obvious….thanks for pointing it out…amazing my daughter forgives my stupidity…

    should have practiced my preaching and ignored the condescending, cant you control your child, glares…

    stanley seigler

  18. Donna September 4, 2010 at 03:55 #

    Hi to Clay!!!

    @ Stan,

    Lot of people think of Jim Sinclair by the essay he wrote Don’t Mourn for Us. He wrote another essay that I think is outstanding and is a lesson in how to conduct oneself in public places and really made me think, that who is more important, my daughter or the stranger in the supermarket or store.

    It’s called Alien Contact and written by Mr. Jim Sinclair

    Here’s a link

    http://jisincla.mysite.syr.edu/contact.htm

  19. Donna September 4, 2010 at 04:13 #

    Clay,

    I have some of your writings from two other forums from yesterdays. I printed it out and put it in a binder that I added on to through out the years for my daugher who was a preschooler back then and today is going to be fourteen in a few months. The best of the best writings I saved for her on all sorts of topics that only now is she reading and pondering.

    A heartfelt thanks that I got to meet you back in 2001 and my daughter is meeting you now!

    Donna aka Horsey

  20. Kev September 4, 2010 at 07:38 #

    Clay n Donna – I guess I didn’t explain it too well. Whilst my partner talked with this person, I had Lily some distance away. Whilst I talked with her my partner had Lily. The only part she would’ve heard was my partners final shout.

  21. Donna September 4, 2010 at 11:14 #

    @ Kev

    Partners final shout.

    Mr. Jim Sinclair’s essay Alien Contact is worth pondering in this topic. The meaning of Grace and Grace extended in an Alien Contact. When I read that essay a long, long time ago it made me think of all sorts of repercussions that can and will occur, for instance did I want to open a door explaining my child was autistic and have the stranger in line apologize and comment with my child standing right there, “I’m so sorry your child is autistic and your life must be rough because I saw that speacial on TV and I think the local paper just had a blurb about a cure to try”. Here’s a link…

    http://jisincla.mysite.syr.edu/contact.htm

    @ Clay & Kev

    Would you be interested in posting some book reviews on your blog evenry once in a while when there is really good book? Similiar to the one that ran in Our Voices Vol I Issue I March 2005 Not Even Wrong ~ Adventures in Autism by Paul Collins–Great Read! I think Clay you get this magazine and it must be somewhere in your casa.

  22. Clay September 5, 2010 at 17:38 #

    @ Donna, I hadn’t read “Alien Contact” before, strange. It really is excellent, shows that Jim has been far ahead of us in many ways. Xe has an excellent understanding of people.

    Wow, I’m really flattered that you saved some of my earlier writings, and wish I had a copy! For some reason, I never got a copy of Our Voices, even though I vastly overpaid my membership fee, because I was so appreciative. Blog is officially dead, and I don’t do book reviews, because I seldom read them.

  23. stanley seigler September 5, 2010 at 19:31 #

    [donna say] It’s called Alien Contact and written by Mr. Jim Sinclair…Here’s a link
    http://jisincla.mysite.syr.edu/contact.htm

    THANKS for the link…i’ve had pleasant Alien Contacts too.

    reflecting my reactions…i did not try to explain my daughter…it was an “in yo face (expletive deleted)” , name calling, rant…like when i see someone without handicapped plates in a handicapped parking space…yet;

    my over reacting behavior inappropriate…embarrassed wife and daughter.

    stanley seigler

  24. lilandtedsmum September 5, 2010 at 23:28 #

    Dear all,
    My child is still pre-school and her comprehension and speech is delayed. i can assure you that she would have had absolutely no idea what was being said and, as Kev pointed out, she wasn’t in ear shot for either of our conversations. I also think that something good can come out of this. if it stops this woman from being so quick to show her disapproval to other parents then I’m glad. If upon reflection it leads this woman to find out more about autism, then I’m glad.

    I do regret, however, raising my voice at the end of the conversation. However, unlike someone above suggested, it was not because I wanted sympathy from this woman and wanted her to discuss how hard my life is – I don’t view it like that at all. Lily is a blessing to me. I shouted because somebody was making a snap judgement about my daughter and about me as a parent – it hurt me….I’m human.

  25. Barbara September 6, 2010 at 17:35 #

    Sorry you’re leaving, Clay. Sorry we fell out. It was a matter of principle for both of us. But it’s sad, anyway. I always loved your style and your kindness.

  26. stanley seigler September 9, 2010 at 04:47 #

    [mum sat] re:

    re: i can assure you that she [Lily] would have had absolutely no idea what was being said …

    dont be too sure…from another list a mom say:

    “In speaking with Kim [her autistic daughter], when she began to have a voice, we asked her how she could read, when she had no formal reading program in school. Her response was that when you have no voice, you take in everything, including visual words and spelling”

    mozart wrote symphonies at 4 yo (some young age)…nobody taught rainman how to count cards…and;

    i have no so called “scientific proof”…butbut…”i can assure you” my non verbal daughter knows everything…besides nothing is lost in relationships when “intelligence is presumed.”

    re: If upon reflection it leads this woman to find out more about autism, then I’m glad.

    i too am glad you raised your voice (keep on)…tho it will have little effect on THAT woman (society), just my cynical opine…but;

    “never, never give up” (as someone said)…we dont give the idiots enough hell.

    re: ….I’m human.

    no you are not…you are a mum…a super human.

    stanley seigler

  27. stanley seigler September 9, 2010 at 04:52 #

    LBRB owner,

    housekeeping, is my computer playing mind games with me…or have i been blocked? post do not post…advise so i can move on…thanks

    stanley seigler

    • Sullivan September 9, 2010 at 07:21 #

      stanley seigler,

      I just got one message unstuck from the spam trap. Sorry for the delay.

  28. Chris September 9, 2010 at 05:33 #

    I see you!

    (Sometimes the spam filter kicks in randomly, then you get an email saying your comment has been approved! Be patient, and make sure the email address you use is valid.)

  29. lilandtedsmum September 9, 2010 at 07:50 #

    Stanley,
    Thanks for that…you have made me think long and hard. Maybe I am too quick to assume I know exactly what Lily is taking in…..

    A friend of mine works with Autistic people. She has told me that when she is out and about and she sees disapproval in others, she simply hands them a card with information about autism. No wise cracks, no attacks – just information. That usually does the trick. Nobody is talking about the autistic individual concerned as if they are not there, and there is a lot less chance of a disagreement taking place……I think I may follow suit. Probably a lot less distressing for all concerned and yet I will still feel that I’m addressing the ignorant/rude people who basically make life a lot more uncomfortable for many.

    Thanks for the Supermum comment – I am off to put red knickers on over my jeans immediately! ;0)

  30. stanley seigler September 10, 2010 at 04:51 #

    [supermum say] A friend of mine works with Autistic people…simply hands them a card with information about autism. No wise cracks, no attacks – just information. That usually does the trick…I think I may follow suit. Probably a lot less distressing…

    COMMENT
    a simple, grown up, intelligent, less distressing approach…it works for friends of mine too…recommended for all…and;

    maybe one day when i grow up i will use it…actually have almost passed trying to educate stage…and dont want to grow up…”i’ll never grow up”…and;

    it is an option…sad getting old is not…as the tee-shirt say: life sucks then you die…

    actually have a better life than deserved and have been blessed with a precious, brilliant daughter.

    stanley seigler

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