For some time now I have been reading several blogs by adults on the Autism Spectrum. All are fabulous blogs by fabulous writers and give me, a parent of a child with ASD, much to think about.
A theme I think that I very clearly hear from these adults has to do with pretending. Pretending to be neurotypical. Pretending to fit in.
There is also the message of don’t think of me as broken, just different.
***
I started reading Tony Attwood’s book The Complete Guide to Asperger’s Syndrome (admittedly I first went straight to the index and looked up everywhere ‘girls with Aspergers’ is mentioned).
He says that girls are often harder to diagnose because they do such a good job of mimicking the social situations they see. In essence, pretending to be normal.
***
For 3 days this week, there was an extra 5-year-old girl and 6-year-old boy in our house (plus several extra adults too). Other than taking frequent breaks, Charlotte did fine playing with them.
There’s no doubting there was a difference between her and her two NT cousins.
She’s not as fluid in conversation as they are, and she certainly didn’t maintain the social energy and connections as long as they did. But there were no negatives that I witnessed.
If her cousins were ever frustrated with her, it was likely because she didn’t answer a question or because she lost interest in a game and wandered off.
Charlotte didn’t appear to annoy them (that I saw), and she didn’t appear to be forcing herself to do anything she didn’t want to do.
How she handled herself for the 3 days sounds like the way the adult Aspie bloggers I read would handle a similar experience. Needed alone time, preferred the familiarity of those she is closest to, and had trouble participating in larger group conversations.
I never forced her to go and play with her cousins. I figured if she needed a break, she needed a break.
Sometimes I encouraged her, such as when the lightening bugs came out and the other kids started noticing them. I suggested to Charlotte that we go out and catch some. She had been chilling (in my lap, entire body wrapped in a blanket). Very quickly the 4 of them were running around the yard together pointing out fireflies and trying to scoop them up.
***
This week, Charlotte began a language-based OT group, aka Social Skills group.
I ask myself – what is the real purpose of this?
What is it that Charlotte should be doing differently? We witnessed no meltdowns, no unfriendly interactions. All was good between the cousins. Her peers.
She appeared to manage herself beautifully. By the last morning they were here, she was spent. She woke up and asked if she could watch a movie first thing. This was a little girl who knew what she needed, and what she couldn’t handle.
And, yes, I let her watch a movie first thing while everyone else went about doing whatever they wanted to do.
***
Where am I going with all this?
I don’t want Charlotte to grow up thinking that she has to pretend to be normal. Pretend that she has boundless energy for social interaction. Feel that she must force herself to maintain conversation when she’d rather be wrapped up in a blanket.
Does she really need to attend social skills “training” to learn how to carry on a conversation? To learn how to “manage herself” in a group?
It feels like I’m sanctioning the notion of pretending to be normal.
It’s a conflicting thing. I want my daughter to be happy on her own terms. To feel free to be herself.
I also want her to have friends and engage with others.
But shouldn’t that be on her own terms as well?
I don’t have any grand conclusions here.
Would love to hear from adults on the spectrum and other parents your take on my ramblings.
16 comments
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June 27, 2009 at 1:04 am
drama mama
i know what you mean. i feel the same way.
HOWEVER
miss m has gained a lot of strength from her social skills groups – for things like school and groups and activities.
no one expects her to be a social rock star or the life of the party.
just to have some tools in her box and survive things like social situations…
and know what? we learned that sometimes she actually WANTED to be able to sustain conversations and connections and retreated because she couldn’t.
it’s all pretty much her choice now.
final answer: it didn’t hurt.
June 27, 2009 at 2:50 am
leechbabe
We have been doing a social skills group with Heidi and I had similar reservations going into it.
What I have found is that the group has given Heidi the skills to join in / participate if she wants to. Heidi often hovers on the outside and watches other children and is unsure / hesitant about how to join in.
They are also working a little bit on the skills she will need for school. These days half of school is about learning the social curriculum, working in groups, pairs, teams etc. It is important for Heidi to know what to do in these situations because in the classroom you can’t always walk away or wrap yourself in a blanket.
I really like that in Annie’s classroom they have a big old refrigerator box that has been painted to look like a house with a door cut in it. This is a time out space for any child who is feeling a little overwhelmed during class. There is also a book corner that is partially closed off from the rest of the room. A relief to see our kids needs are being catered for and they are able to take time out when they need it too
June 27, 2009 at 10:37 am
Lisa
So… obviously not coming at this with much first-hand experience, but here’s my take on it.
Even for people that are ‘typical’, there is still lots of training that happens around what is socially acceptable in human interaction. You have to learn how to be polite, and how to engage in conversation, and how to be politically savvy and professional when you get older. There’s LOTS of that that happens. It’s not something that comes naturally to a lot of people — myself included. And speaking from my own perspective, I’m not a huge talker with people I don’t know, and I don’t feel uncomfortable about silences, which I know drives a lot of people crazy, and on the flip side it drives me crazy when others try to fill every moment with unnecessary gabbering. Even for typical folks, which I assume includes myself, there is still a certain level of forced interaction in many situations, and conforming how one responds to the people present and the environment. I wish I was better at it – and to that end went to every “communications” type training that my old company offered! In many ways I bet those were adult versions of the social skills group Charlotte is going to.
I imagine Asperger’s adds another level to that. Yes, you want her to be who she is, and to feel comfortable in her own skin, and it’s absolutely important and valuable for you to reinforce that with her. But the need to conform her behavior to different situations is not unique to her being on the spectrum, it is simply a facet of all human learning. To fit in, to carry on a conversation, to amend her own behavior to fit a situation is an important skill for anyone to be a functioning and successful person, both in childhood and adulthood. It is, however, one that just may need a little more focus to build that skill for a kid on the spectrum. Maybe it is pretending to be normal — but everyone pretends to be normal at least some of the time.
June 28, 2009 at 8:39 am
Kristin
My son did a social skills group which was recommended for him. I had mixed feelings about it. They did go over valuable skills but I’m not sure how well it translates into real life. In other words, he could tell me what they’d learned but I didn’t see a lot of change in day to day life. Like Charlotte, he needs a lot of time alone, downtime, and also time for his sensory needs (jumping, crashing, etc) and a social skills group can’t change his internal drive. However, I think it is important for him to fill in the gaps of what he may not know socially. It doesn’t come naturally to him.
The other part that I hadn’t considered before the class started is that a lot of how the class goes depends on the other kids in the group. Our group was very small with different diagnoses so it was OK. However, there was one boy who was very “mean” (according to my son) and my son often didn’t want to go because of him.
One night my son was outside playing wonderfully with some of the neighborhood kids when it was time to go to group. And I’m thinking “Wait..I am going to pull him out of this real-life social situation he is handling well and go to social skills group?!” It seemed crazy to me!
We will most likely do another group in maybe a year when he is a little older and we have some of his sensory seeking/hyperactivity better managed (I hope!)
Good luck with Charlotte’s group!
June 28, 2009 at 4:14 pm
Quirky Mom
If I could go back in time and do some social skills training as a kid, knowing how I would turn out, I would do it. I still might, as a 30-something, I just don’t expect to get as much out of it.
For me, it’s not about being something that I’m not or pretending to be something I’m not, but having tools that will allow me to do what I want to do. The pretending is one of those tools, btw, and I don’t see it as an intrinsically bad thing. I gain a lot of fulfillment out of my relationships with NTs and time spent in NT-oriented environments (like my job), and I couldn’t do that without my ability to pretend. I like being able to pretend. I only wish I knew of a better way to turn off the pretending with those close to me without creating misunderstanding or frustration.
June 28, 2009 at 4:54 pm
frogger11758
I was a social skills group member for two years in middle school. It was during the school day, once a week, alternating different periods so you never missed the same class twice in a row. It was a mix of anger management/social interaction. I’m not sure how much good it did, but it was enjoyable. I met good kids who I could say hi to in the hallway or sit with at lunch, which gave me a boost to my self-esteem, because I had people who were more then “acquaintances” if not quite “friends”.
Now I assist with a social skills group for male elementary schoolers on the spectrum (so a bit more specific then the one I was a member of). Most of the boys are in the very early stages of learning to talk, let alone chat, and many have extreme sensory issues which often interfere with the goals of the particular session. But it seems to be serving two purposes for them. First, it is teaching them to express what is bothering them. We have a 2:1 ratio of staff to student (Yes, two college students per child), so each kid gets very specific individualized assistance. Second, the kids are bonding, as are the parents. Week 1, all the parents stood silently behind a window watching, and all the kids played separately with toys. By the end of the semester, the parents were chatting and setting-up play dates, and the kids were able to address the other kids in the group by name, and knew which ones they wanted to pair up with for group work. It seems to be doing everyone quite a bit of good, and we’ll be starting up next week with the same kids and only a small change in staff.
I think the key ingredients for social skills group to work is a relatively small group (my teen group had 6, the kid group has 8), an appropriate number of staff (my teen group only needed one, this group needs 16), and a flexibility in schedule. If we note that all the kids are doing well playing catch, we won’t switch them to arts just because it is on the agenda. Fun is also a definite necessity. If the kids don’t enjoy themselves, they will have no interest in coming, and if they don’t want to be there, the class will be a flop. If the class has all 4 ingredients, it hopefully will be a success.
Good luck.
June 28, 2009 at 11:46 pm
Tanya @ TeenAutism
I’ve definitely noticed improvement in Nigel’s conversational skills since he started his social skills class, including voice inflection, which he never had before. It’s still sporadic, but it’s nice to hear occasionally.
Overall, though, I think the merit of a social skills class really depends on the particular class – who’s in it and how it’s taught. Maybe if you can sit in on the class, you can get a feel for how beneficial it will be for Charlotte.
June 29, 2009 at 8:39 am
jesswilson
ok, so i’ve tried to comment on this like 4 times now, but i am daunted by the task. i think the bottom line is that i’ll just have to make my response into a post.
short version .. my view is that learning social pragmatics is VITAL to our kids’ success.
the more tools they have, the less tiring the process may be. the more social cues they are taught to look for, the less mysterious interaction can be. the more they are aware of social practices and expectations, the more choice they have in controlling the woprld’s perception of them.
for me, it comes down to arming our kids to make the choice – employ the tools or don’t, but there’s no choice if they don’t have them.
post to follow shortly, and i’ll give you a heads up.
June 29, 2009 at 11:59 am
Laura
I have a little confessional. *take a deep breath* My mother, a social worker, felt I didn’t have enough friends when I was growing up and forced me to do some sort of group when I was in grade school. To say I resented her for it is an understatement. The memory of it today conjures up resentment. I just wanted to blend in and be accepted for who I was, and I felt like attendance at group branded me as some sort of misfit. Now, my experience might not be representative of anything, so take it for what it’s worth. And I didn’t have any known pathological impairment for which therapy was prescribed. I was just…awkward and shy, I guess.
My husband has a philosophy that I buy into: everyone needs one friend. When a child has no friends, that’s a reason to worry. But if your child has that one friend, she’ll be okay.
All that having been said, I think the commenters before me make great points, and I’m not discounting them, because I really don’t know what I don’t know about asperger’s, and asperger’s in girls. How’s that for wishy washy.
June 29, 2009 at 4:53 pm
pixiemama
I think about this a lot. A lot a lot. Because Foster interacts SO WELL with adults. And his typical peers aren’t half as nice as he is. So I get caught up in thinking “I don’t care if he ever talks to kids. When he’s an adult, he won’t need to interact with kids…” His caseworker (who oversees his aide) pointed out to me (when I shared my thoughts) that Foster will start to notice in the next two – three years, when the kids get meaner and THEY start to care how he interacts or doesn’t. If I keep ignoring his need to learn how to appropriately interact with other children, I’m only harming him. It frustrates me. I WANT to shelter him.
June 29, 2009 at 8:36 pm
Good Fountain
Thanks for your comments everyone. Really appreciate it. I shall keep plugging along with social skills group. As she gets older I imagine her needs will change. We got lucky that the social skills group she’s in happens to be 4 girls and 2 boys instead of the reverse (per usual) so the therapists feel the kids will make significant progress, and because they are all at right about the same skill level.
Anyways, I do agree that the skills are necessary. As she gets further along in school, her needs (deficits) will become more apparent. Right now I have a hard time pinpointing just what they are. But I’m sure that will come.
June 30, 2009 at 12:02 am
Quirky Mom
What Jess said!!!!!!!!! That is what I was trying to convey — having the tools doesn’t mean you have to use them. It just means that you can choose to use them when/if you want to. I wish I had more tools to choose from.
You are such an insightful mom. I know I’ve said this a bazillion times, but Charlotte is incredibly fortunate to have you.
June 30, 2009 at 2:08 pm
floortime lite mama
very very insightful
- here is my take on it -I read “the outlier” recently and it offered up this theory
You will be expert at what you do for 10,000 hours
OUr kids are less flexible socially becasue they dont seek out social situation in order to get practice at them and have not been doing so since birth
Therefore it creates stress
Which makes social situations stressful
HOWEVER if they had lots of practice they could get better
But how to get that in their lives without stresssing them out ?
That I have no answer to
June 30, 2009 at 6:36 pm
Erin
Sorry for coming to this late. I don’t think of social skills training as pretending to be “normal”, I think of it as giving my daughter the skills to be able to join in group activities as she desires – she won’t be handicapped by her lack of knowledge. It’s about giving her a choice – we give her the tools and she decides how to use them. I agree with you – I never want my daughter to feel like she has to pretend to be something she’s not. I just want to equip her with the skills she will need to go through her life with confidence.
July 1, 2009 at 1:41 pm
karen
ive never had social skills training, but the challenge for me is one of extrapolation. sometimes trying to apply a rule of social interaction to a specific situation, even if the rule is generalized, is really hard. so i still blunder, i still miss stuff in social interactions.
no, i *don’t* want to make eye contact, it hurts. looking a foot past someone’s head, enough to lip read, is still hard.
maintaining a conversation with more than one person at a time is going to be challenging until i can address central auditory processing issues. i will continue to interrupt in a group, derailing the flow of conversation.
online communications continue to be my main conduit to engaging with other people’s minds. real time is just too much to handle, except in small doses.
this application of strategies is my main challenge, though. *getting* the meta-context of an interaction is situation-specific. keeping track of what’s happening in real time is a sensory challenge, and addressing these is important first, IMO. otherwise i anticipate being frustrated at not being able to figure out when to apply the rules because i can’t get the situation enough. replace “rules” with “principles” or “guidelines” and it’s the same thing, different clothing.
July 1, 2009 at 10:19 pm
M
i’ve been at both extremes. was pressured to go through the motions, seem normal at all costs (when growing up). it was oppressive, awful. later, in adulthood, isolated, did absolutely nothing to connect with people. zero “pretending to be normal”.
in my experience, right in the middle is perfect. learning social skills is helpful, very constructive…does not in-itself stifle one’s personality.
i always use the example of traveling to another country.
if you were going to visit Mexico on vacation…it wouldn’t be necessary to learn Spanish in it’s entirety, with perfect grammar and pronunciation. going to that extreme, just for a five day trip, would be overkill. on the other hand, you also would not want to learn zero spanish, saying something like, “Hey, I’m an English-speaker. They should just accept me for who I am.”
compromise is good. learning a few phrases…learning some of the customs…helps make communication easier, things go better.
and for the neurologically otherwise, social settings can be very much like another country. so…a few skills, tricks…very helpful.