In my role as an educator I often remind others (myself included) to consider that H and others like him who are Autistic are working doubly hard to make their way in the world. The effort my child makes to navigate a social situation is something I know I cannot fully understand. The constant reining in of impulse, and intense effort to process and interpret the experiences, perspective and non-verbal cues of others, combined with the management of anxiety and a sometimes less that positive image of self – that is hard work for my child.
I was pulled up short the other day when we left an event and as we got in the car H asked me in a matter-of-fact tone, “Mom… tell me what I did wrong?”
My heart almost stopped right then!
Actually, I am certain it did: at light speed… for an almost imperceptible moment. The center of me felt like it was being pinched in some sort of thoracic vice grip. To the scrutinizing eyes of others, I probably wouldn’t have skipped a beat…
No. Really!
I caught my breath and responded, “How about if we talk about the things you did really well instead?!?”
And we proceeded to inventory the social successes and high points of the evening which, by the way, were many.
It is now, a few days later, that my heart is again feeling the grip of the thoracic vice. Only now it is more pronounced, and no longer a fleeting thing. As I write, my throat is tight with uncried tears as I wonder at my role in the raising of my beautiful son.
H asked me that crushing question with the calm, resigned tone of a scientist collecting data. I confess that we have worked hard at reinforcing the idea that he can trust us to give him the social information that he needs and that he is not in trouble when we talk to him about a social mis-step. We are working so hard to support his development of social understanding. I suppose his relaxed and inquisitive tone could be seen as an indicator of success in this capacity.
However, I can’t help taking it as a huge nudge, a reminder, maybe a kick in the teeth even, to be cognizant of care needed in the steps and movements with this wonderful young man. I am realistic about my son (almost all the time) and I see both his strengths and his stretches. I am trying to figure out what I need to do differently… so that H trusts me… but so that he also develops greater trust in himself and faith and confidence in the likelihood of his successes.
I am questioning if I am seeing his strengths enough: seeing and appreciating all that is amazing about him right now? Am I focusing on the positive aspects of my son… the way that I want and expect others to do, or am I over-focused on his development and the skills and understandings I would like him to have? It is a tricky balance – and to be honest… it frightens me immensely. I want to get this one right – but I suspect will always feel some discomfort with the fact that I may never know for certain if I have. We are works in progress… all of us. Sigh.
I am hoping that some time soon his query might be more: “Mom, you want to hear what went well tonight?!?”
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30 Days of Autism is a project designed to fight stigma, promote civil rights, and increase understanding and acceptance for those who process and experience the world differently.
© Leah Kelley, Thirty Days of Autism, (2012)
Thirty Days of Autism 
You’re awesome. I hope writing about it helped you process it; I’m sure having it here for the world to read will help countless other parents, so keep writing! xo
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as i restrain the tears i am praying that these words if posted r effective. i am 50 yrs old, a mother of two teens & divorced since 2008. the children live with their father & his wife. i am a retired teacher of preschoolers-3rd grade (for the most part). i am only recently congnizant of the applicable label of asperger to explain the difficulties i have xperienced all the life of me. the siblings of me (i thought then) affectionately nicknamed ‘weirdo’. i was constantly ‘accused’ of having ‘book sense’ but not ‘common sense’ & later b-ng (i guess, too) ‘intellectual’.
i am an african american female. double majored (psych & physical ed.) participated n 3 ntercollegiate sports, maintained an above b average, held campus jobs & was active socially via those venues. likewise honor roll student n highschool, played volleyball, active in other xtra curriculum activities & njoyed friendships of all sorts.
that said, i more or less followed along without quite understanding conversations in particular. as active as i was, i felt unattached & began to wonder why others seem to get each other particularly through conversation & i ddn’t. i was functionally social, i njoy dancing & music. i realized now that the process of compensation can enable you to get by, at least so you think. ironically, as u get older & presumably developed more compensation skills the more aware you become that u dn’t get certain things that the majority of persons (from various nvironments) seem to intuitatively get. you also are consumed with getting through ‘routine’ daily activities, deciding what to wear, showering, cooking & eating thus you develope systems/routines to help you so that you don’t have to make decisions but follow a structured routine. you become quite dependent on these systems/routines & become very protective of them & very agitated when they are disrupted/altered. it’s as a blind person who doesn’t have their seeing-eye-dog or cane or someone moves their furniture. our routines are our aides to get us through a day with some amount of efficiency.
the accummulation of internalized misteps over the years, i believe is what produces social anxiety versus sensory over load anxiety. i do not process fast enough to catch if i am inappropriate (we are concentrating/focused on the one task-everything else seems to disappear) n what i say or am doing. such knowing might hit us later, as we try to review if ‘we said or did anything wrong’ in any particular interaction, that may or may not have garnished a strange look, shorten conversation or a mysterious chuckle from others.
your summary of the moment to moment difficulties that even as accomplished adults, we still have to deal with, was so eloquent & accurate, it brought tears to the eyes of me. oh yes, i am an emotional/affecting, not ‘stoic’ aspie.
thank u for sharing this.
terri a.
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Terri,
Thank you for your beautiful and honest response to my post. I am honoured that it spoke to you, and I also very much appreciate you sharing your perspective and experience so openly.
I find it very insightful to hear from an adult perspective about the things I observe with my son. I have to infer so much – and a response like yours is very confirming that I may be reading the situation at least somewhat close to a sort of zone of accuracy. It also reinforces for me, yet again, why we need to be paying close attention to the voices of autistic adults. My child has well developed expressive language skills, but even so – he is not yet aware enough of his own internalized process to share the insights of an adult perspective.
It is funny, I have been working on a post about routine and change, and I abandoned the completion of it for this one. I will get back to it of course, but your observations about your own experiences with reining in the world with routine are something I have touched upon. I so like your analogy about moving the furniture…
Thank you, Terri! Please come back to my blog and leave a comment again soon!
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Love this; thanks for writing it and sharing it! 🙂
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thank you for sharing your story 🙂
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Thanks for sharing this. It’s great that you are focusing on the positives in your son’s life. However as an Autistic adult, I can say with certainty that the question “what did I do wrong?” isn’t always coming from a negative place. For me, knowing what I did right is great and all, but knowing what I did wrong, so that I can add it to the supercomputer program that is my brain under “do not do this again” is far more important than being praised for things I know I did right (as I have often been told they were right before – I *know* I’m doing that thing right). So perhaps when your son asks you “what did I do wrong?” he’s simply trying to gather more non-redundant data for his social algorithms. Sometimes you do have to focus on the negative thing. I know it has hurt me before when people tell me what I have done wrong, but most of the time it is extremely helpful – knowing that I a) have done something that upset others and b) could have done it differently if I’d been aware, usually helps relieve that unhappiness. Sure, I like to be perfect. I like it when I do everything right. But if I don’t, I like to know it, so that I can fix it for the next times.
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Thank you E… this is really a very helpful perspective and has actually calmed my concerns. Seriously, I think my shoulders are a little more relaxed. It is wonderful to have the perspective of adults with autism/autistic adults, and I appreciate your insights about the importance for guidance over praise for what you are already doing well.
Interestingly, today I asked H what went right after a social situation with a group of kids in art class, and he responded, “Everything.” We broke it down to some specifics, but didn’t have much to discuss. It was bit like investing in the stock market based on past performance… no new trends or strategies were learned or explored – and this is a poor predictor of future gains – so to speak. And you are right- the things that went well – were because the skills in these area have already been established.
Your comment really has encouraged me! I appreciate that!
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Glad to have helped. I do want to clarify something that I said last night. While I do find going over things that I did “right” to be redundant, it can be nice to be reminded that I *am* doing a good job, even when I make mistakes. A focus on the all-negatives is just as useless as focusing only on the positives, and can be very discouraging. And it is especially helpful to know if I’ve applied social rules correctly in a new setting – generalizing has never been a major strong-suit of mine, and so knowing when I’ve done so correctly (and incorrectly) is especially helpful.
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As an adult with communication and neurological issues, I often ask for things, or respond in an ‘upside down way’ (my kids definition of my problems). But see, I have a family and a job. Autism and communication issues (varies of course) does not mean no future, just a harder more confusing and painful path (those without issues can find life hard anyhow). I can communicate much better in ‘text’ than in person so i work ‘remotely’ on line. Once I couldn’t walk, talk or write, MUM LOOK AT ME NOW, WE DID IT! Family is the most important support someone with autism/communication difficulties can have. I find the ‘school gate’ the most scary and confusing part of my day.
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Thank you so much for your comment, Emma. Your perspective is so valuable and very much appreciated!
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My son is a teenage Aspie and it is hard to tell what he is thinking or feeling. Every now again he does something that means “I love you”.
I’d just come out of hospital after 3 days. Normally he would come in from school and rush upstairs to play on his xBox without a word but on that particular day he came into my room with a bar of chocolate and said “Hi Dad, fancy a piece of chocolate” before giving me a sizable chunk.
Unless you are the parent of an Aspie it’s difficult to understand the significance of this simple act of kindness.
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Thank you for your comment, Dave. Yes… I agree – sometimes we have to use our detective skills as parents of those who perhaps express themselves differently. Your son is fortunate to have a parent so receptive to his way of communicating his love for you. Thank you for sharing this beautiful moment. That must have been the sweetest chocolate you have ever tasted!
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@ leah kelley/ you are so welcomed. as the autistic-asperger spectrum becomes more known n its various manifestations perhaps people shall become more sensitive to how we process our nvironments; whether those of us who ‘look normal’ & our difficulties are not apparent or those of us who have apparent difficulties as well. you are definitely helping in that with this blog, thank you again.
@ 3rd glance/ you are so right about needing feedback from both positive & challenging xperiences. i would prefer if people would just tell me what i did that was nappropriate or simply uncomfortable for that particular person. often times people are not comfortable with stating this. i’ve become more direct n asking questions & i just let people know when they kindof rhetorically ask, ‘you know what i mean?’ i now simply say, ‘no, i dn’t. please help me to understand what you mean.’
@ emma/ i have yet to directly share this recent revelation (in about the last 2 years) with any family members. i talk about it in passing, meetings that i go to, mentioning movies etc. i’ve recently thought about sharing it with the sister of me, perhaps this is the prompting that i need. family support is important. as an adult, knowing the established family dynamics that seem to control the flow of our family interaction, i am reluctant to upset that dynamics. thanks for sharing.
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I love how you turned the question around! You are an amazing mom and H is lucky to have you. Yes, there may be times when he needs to do something differently to survive in the NT world, but it should not always be about the negatives.
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Thank you Sue… I appreciate your comment and encouragement.
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Leah, what a beautiful, beautiful reminder. I struggle with this same balance continuously with my daughter, and you can trust that I will be looking at her from now on with your post at the back of my mind…because there is SO much that she is doing right. 🙂 Thank you very much for sharing.
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Thank you so much for you comment Linda. Our children often seem so predisposed to anxiety, and we really need to be conscious of what they are doing well so that we are not focused on considering their development from a deficit perspective. I agree that it isn’t easy to balance this – but it is reinforcing for me as well when I get such positive comments – like yours. 🙂
I am reminded that Carol Gray suggests that 50% of Social Stories should be written about what the child is ALREADY doing well. This is difficult to do if we are just putting out fires and not proactively looking to reinforce existing strengths…
It is a goal I am working toward… and a balance I continue to seek.
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What an important lesson! You told the story beautifully!
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Thank you! I am pleased that it spoke to you.
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Thank you so much for this post and for reminding us of the need to remind our children of their acheivements and not focus on the things that didn’t work out so well. You are an amazing mum. xxx
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Thank you so much for your kind comment and support. I appreciate that.
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I loved reading the responses to this. I often find that being the “adult” (in my case, usually the teacher, but sometimes the auntie) means we’re constantly trying to figure out the right thing to do and it’s not always easy to get the feedback we need from the children we’re trying to help, guide or teach. I love that blogs like yours become a place where adults who have experienced these things can communicate to the adults who are interacting with children. I find it so insightful and empowering.
Also, I think your concerns about finding balance between identifying/learning from mistakes and focusing on the positives is shared by teachers and parents of children without special needs, too (although I understand that you would get more nervous that H mightn’t have the skills to adapt if you don’t the balance right). It’s so easy to forget to reinforce what children CAN do and what they DO do right, because we worry so much about them making mistakes and doing the wrong thing and want to protect them from that (and so focus on it).
The point of this rambly comment was just to say that I and many others share your feelings and that I wouldn’t even have thought of turning it around so positively. I’m constantly reminded about how to be my best self when I read your posts, both with my students but also with the way I treat the adults in my life – often adults feel just like children, inside, and crave the same care and support.
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Zaine,
Thank you so much for your thoughtful comments. I really appreciate your encouragement and your perspective. I think you make an excellent point about our focus on identifying and learning from errors and mis-steps, and that it often comes from a positive intent.
I also agree that it is so amazing that there are adults with autism/autistic adults sharing their perspective here. I very much believe that we need to be paying attention to what adults with autism have to say about their experiences, and also that it is by supporting adults with autism that we are building the world as we want it to be for our children.
In all honesty, I want to frame your last paragraph and refer to it on those odd times when I am questioning or reflecting on the relevance for others of my own ramblings and perspective. Absolutely lovely and very affirming! ((Hugs))
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I hear you loud and clear. With all the intervening it’s hard to model the acceptance that we expect everyone else to have for our children. It’s hard to encourage them to do what is socially acceptable and not send the message that they are at odds with that. It is a fine line between educating them and making them feel inadequate. Torn between wanting to give them every tool for navigating the world and accepting that those tools are for others like us not like them. It is not important for him to look people in the eye.. or play the game of polite and superficial small talk. Do you force him to learn this for his own good or force others to learn more about autism. I try to juggle both.. but trying to be a slave to two masters is fraught with moments that having me doubting both.
You are not alone.
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Yes… very well stated Tara. Yes!!
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@ tarah & leah/ if i may share a perhaps unconventional/difficult perspective with regards to social integration. as i have used the capacity to focus & study/research (particulalrly behavior from a comprehensive social, scientific, spiritual perspective) which i believe the asperger syndrome has afforded me, it has occurred to me that emphasis placed on ‘social integration’ may be more of a ‘knee jerk’ reaction responding to our basic fears of being rejected than a thought out analysis of what is actually healthy for the individual, wholistically speaking.
i will qualify this assertion in saying that the difficulties i have had in social interactions & actually not even being aware that such interaction was/is considered a informally/naturally learned ‘system of behaviors’ & this even as a young adult, diminshed it’s importance to me. the underpinnings of flirting, small talk, certain joking, other such subtlties, & even getting thru ‘conventional schooling’ & getting a ‘conventional job’ i find difficult to place on the spectrum of importance with respect to the ‘big picture’ of social ills as prejudices, human rights violaltions, poverty, marginalizing people, intolerance, environment degradation, & the violence of war.
in addition, i have found that the conventional lifestyle of industrialized people, generally speaking, is not condusive to wholistic health, so why would we try to integrate persons, already impaired into a ‘system of behaviors’ that require that the ‘normal’ people be adversely dependent on caffeine, nicotine, alcohol, materialism, & violence? it seems to me that certain levels of chronic stress has proven detrimental to ‘neural typical persons’ in general, so why placed persons of certain impairment in such stressful situaltions.
the typical, grammar school schedule, with all of its bullying, cliques, ostricizing is hard for many ‘n.t.s’, so why would we think it healthy to place someone on the ‘spectrum’ in that environment. now extrapolate this as the individual gets older, highschool, dating scene, college, or job or military etc.
i expect many may have heard of the story of the chimpanzee which was a pet of someone woman, that attack her friend & litterally tore her face off? i cn’t but think ‘duh…???? they said the chimp was stressed out about something…u think??? if we/people find it difficult to cope in an industrialized environment of fast paced, concrete & pollution, & little to no real self reflective time, (without such aids as mentioned aboved), why would a species newly placed in such an environment not behave negatviely, (have a nervous break down)?
when i spoke of anxiety as it pertains to social situations vrs anxiety as it pertains to sensory overload, i failed to mention that, it is not necessarily the parent/guardian/or home environment of the impaired child that is the primary cause of the socially developed anxiety. think of a rat being trained in a maze via electric shock, well unfortunately & fortunately, that’s how negative feedback effects everyone. it is my understanding that it just so happens that it accumulates over time into sometimes debilitating social anxiety in persons with such ‘wiring impairment’. as a whole (industrialized societies) our lack of sensitivity & funtional intollerance heightens the intensity of the shock that would perhaps otherwise be processed as a mere ‘pin stick’.
the biological based sensory overload anxiety is also stressed triggered but via the actual neural-biological processes. while the social anxiety is based primarily in associative processes i.e. pavlov dog xperiement.
that said, i think, we ought to consider the wholistic effect of social integration & not just the image aspect of fitting in or even being able to get a job
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Hi Terri,
I appreciate your perspective and that you have taken the time to so thoughtfully comment.
I also agree that there is a tricky balance between finding a place of fitting in and honouring the individual. And too… it must be asked: fitting in… like how? for whom? for what?? What is the value of this and how can we keep the value of the individual honored and intact. And really… who is to say that what I perceive as an NT is valid as a perspective for someone else…
Thank you for sharing your perspective…
You might be interested in this post as well: https://30daysofautism.wordpress.com/2011/04/17/who-says-i-want-to-fit-it/
or: https://30daysofautism.wordpress.com/2011/09/06/easy-silence-i-am-still-learning-to-communicate-via-thirty-days-of-autism/
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http://www.blogtalkradio.com/thecoffeeklatch/2012/01/23/the-dsm-v-and-aspergers-syndrome-and-pdd
this is a great discussion featuring temple grandin.
terri a.
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I listened to this the other night… they are doing a whole series. Thanks for the heads-up!
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thanks for the heads-up on the social-thinking website with michelle garcia winner. initially, it was tough getting a sense of her points but eventually i got the jist via the various bullet points.
this is a paraphrase & summation of what i understood:
social thinking/cognition is generally intuitively acquired as walking & talking; that is, behaviors which we acquire by simply being exposed to them through common-repetitive informal/nonscripted interaction. our neural system absorbs this data & processes it over time & ‘automatically’ breaks it down from its whole context into parts that are eventually processed in our minds & subsequently becomes a part of one’s behavioral system. reading/decoding body language & n particular eyes, as well as speech inuendos such as word choice, tone, puns, sarcasm, & irony to discern emotions & thus thoughts is the crux of what is considered conventional or neural typical social thinking/cognition.
i believe i get that now & think this is probably great for early intervention while the child is cognitively & neurologically supple. it may prove less feasible with late intervention (teens & adults of various ranges) as our learning preferrences & neural pathways have been pretty much established. the concentration & thus time it would take me to participate in such a program of necessary & repeated modeling & cognition exercises would prove to be inefficient to me. i think that is why older folks on the spectrum tend to limit interaction with conventional society in addition to having the control/choice to do so, whereas dependent children don’t.
i believe homogenous interaction for teens & young adults on the spectrum & with the affirmation that they have a viable system of socializing that does not need to be validated by the conventional system, is paramount for their self confidence. this established self confidence would then aid them when they needed to or ‘chose to’ interact in conventional communities i.e jobs, social gatherings & etc.
thank you again leah, i appreciate your steadfastness & ‘thinking out of the box’.
terri a.
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‘Tell me what I did wrong?’ spoken with the calm, resigned tone of a Scientist collecting data.
Those could easily have been my words, with my delivery, after attending an increasingly rare ‘social’ event – but also at home sometimes, after a misunderstanding.
‘What did I do wrong?’
Spot on Leah.
Is H’s real name Hero? 🙂
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Aw! Thank you so much for this, and I send you my biggest crinkly-eyed smile. You are so sweet and I very much appreciate you supportive comments.
H is definitely a hero of mine, but no… we didn’t have the foresight to name him this!! LOL
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