My Autism Insights

As my daughter’s class explores questions of wants vs. needs, and we spend a laugh-filled, lovely evening with some of my husbands oldest and dearest friends, I am forced back to an issue that I often avoid thinking about.  How do I help Gus find a friend?  Are friends a want or a need, especially for a kid who prefers to be alone?

Listening to all the hilarious stories of a group of boys between the ages of 12 and…well, now, I was struck by how such simple encounters made for the longest lasting memories.  I realized just how dumb ‘tween and teen boys can be (No offense, C!  I love the stories and I’m honestly a little jealous of all the fun you all had!) but also that on a very tangible level, they need the wild release that they can only get from being around other boys their age.  The wildness seems to forge them into the men they will become.  There seem to be valuable lessons in that nuttiness.  Look at Mowgli from The Jungle Book.  He had all those adventures with Baloo, which cause Baghera endless headaches, but in the end he was able to become civilized.  He grew from those adventures.  What happens to a boy then who doesn’t have those formative, crazy-male-bonding experiences?

The trouble is mostly that he never seems all that interested in being friends with anyone.  He has, on the rare occasion, approached a boy his age, but it almost never works out and he ends up alone - happily I should add.  There are very few boys his age in the neighborhood, and they don’t have the patience for someone who can’t quite keep up or for someone who takes so much work just to have a conversation with.  I’m usually just happy they’re not mean to him when he’s around; they just sort of ignore him.  Every rainbow colored moon, they will play together if there’s an adult (my husband) facilitating a game.

If he’s happier on his own then, is it right for me to push him into situations where he has to interact with other boys his age?  Is it fair?  Is it setting him up for anxiety and heartache?  But if I don’t, he misses out on a huge part of male development, it seems.

This came up at his parent-teacher conference, and we all tried to brainstorm ways to get him into a social setting.  We thought of music classes or bowling.  Soccer, which is on hiatus now anyway, is too busy to allow for developing much of a friendship.  They run, they go home, end of story.  Bowling has possibilities, and I’ll call about a special-needs team in the area.  Music classes don’t strike me as the best social opportunity, although he does love it.  I won’t even get into the cost issue for music classes.

Should I get him involved in an online community for kids?  Maybe I can find a Pokemon kids forum or something.  A pen-pal would be better than nothing at this point.

There’s also the possibility that I don’t need to be so concerned about this and he’ll be just fine without my interference.  I don’t know - thoughts?  And my apologies if I’m rambly - that kind of day.

Now that we’re well into autumn, here are a few things that could be fun to try with your special needs child:

Apples and pumpkins are in season!  Take a trip to an orchard if one is accessible to you.  Then, after the fun of picking fruit, you might be able to use that sense of accomplishment to entice your sensory defensive child to touch…pumpkin guts!  Eww!  Seriously, if your child has tactile sensory issues, touching something gross that he/she actually picked and worked to obtain might help get past the hump.  If not, it’s okay, you do the scooping then use one of those carving kits to work with the outside of the pumpkin.  Poking holes around an outline can be great for fine motor skills.  I’d avoid the sharp instruments, though.  If carving is still not an option, how about painting faces on little pumpkins?  That could be appropriate for children who have trouble differentiating emotions.  Let’s not forget about the apples!  How about making an apple pie with a homemade pie crust?  For a child who can tolerate the sensation and needs to strengthen fine motor muscles, kneading dough is fun and the end result is delicious.  Cooking is also an essential life skill.

Autumn is also a nice time for outdoor sports like cycling, hiking, or running.It’s neither too hot nor too cold, and in many places, the scenery is pretty breathtaking.  If you’re in an environment where the seasons don’t change, you can still enjoy being outdoors.

Finally, one of our favorite Halloween season movies is Spookley the Square Pumpkin.  The first time we watched it, I noticed that Gus became very quiet and serious.  It’s about a pumpkin that is different and is shunned by most of the inhabitants of his farm.  He has a hard time fitting in, but in the end he finds acceptance.  It’s a sweet movie with a nice message (in my opinion) for typical and special needs kids alike.

Is there something special you do with your kids during the month of October?

I read about this yesterday: ADAPT , an advocacy organization working to get better support for people with disabilities to have better housing instead of being relegated to institutions or nursing homes, had an interesting experience with the presidential nominees’ campaigns.

ADAPT took a delegation to Washington in order to meet with HUD (Housing and Urban Development), the Obama campaign, and the McCain campaign.  These meetings occurred separately.  In a nutshell, HUD was unable to help and politely communicated as such, the Obama campaign people listened respectfully.  The McCain campaign, well, they were not quite so nice.  They had more than 15 ADAPT members arrested because of their non-violent protest.

So just to be clear, there was a group of about 100 people peacefully protesting for better living conditions for people with special needs.  And the McCain campaign not only refused to even accept materials for proposals, but had the  protesters arrested.  Oh, and there was at least one injury as a result.  This is the same campaign that Sarah Palin became part of when she pledged her friendship to families of people with special needs.  I guess the same pledge doesn’t include the actual PEOPLE with said special needs.

Yep, thanks, Sarah.  You’re a real pal.

A few days ago, I posted about the Seymour family in Canada who was asked to leave a family style restaurant when their autistic daughter succumbed to a meltdown.  I put a link to the post in my private journal, and my good friend left a comment that moved me so much, I felt it should be seen by a larger audience.  So here are the words of Spindlewand:

“There are places where I can understand patrons expecting a level of silence and others where I would not. A family restaurant is no place to expect silence.

DH and I, when we had the chance, would frequently go to Applebee’s on a Friday night. We were usually the oldest people there, unless a grandparent showed up after a dance recital or something, and while I was occassionally annoyed by loud patrons, they were clearly the kind of loud patrons who are just - loud. No particular “reason” for it other than inconsideration. Even so, we never complained. Some people are going to speak loudly. The local Soccer/Track/Wrestling team is not going to be subdued unless for some bizarre reason they are out celebrating a loss. It goes with the territory. Any restaurant airing sports events on a TV patrons can see is going to be a noisy place.

One of the most impressive things I have ever seen happened at a wedding rehearsal dinner. It was an informal affair, with a lot of people who did not really know each other very well, and the bride’s aunt went into an epileptic seizure. One of the Groom’s friends looked up, said something like “Do you need us to do anything?” and when she was told no, everyone went back to their previous conversation and ignored it - not because they were insensitive, but because they felt that the person involved would prefer not to be the center of attention, and they were perfectly correct. It was a perfect handling of a difficult situation.

I don’t think most people really know that much about Autism. Eveything I really know about it I’ve learned from you. People in general may not realize that what they are witnessing is to a larger or smaller degree involuntary. However, once they are aware of that, they should understand that involuntary means you can’t help it and either politely ignore it or politely and quietly ask if any help is needed.

One would hope that the days of hiding the disabled away behind closed doors is long behind us, although so many things we wish were long behind us aren’t quite yet. Some people who are not disabled assume that they will always be young, healthy, in control of their lives and actions, etc. But you know what? I have been in at least four car accidents that you would have thought might have left me physically disabled. I have been blessed by God to walk away from all of them, one way or another. That can happen to anyone at any time. Maybe Autism can’t, but a number of other things that affect mind/body connection can.

I suppose it comes down, like everything else, to two simple things - your view of what people are and therefore what they are entitled to, and how close to that ideal you manage to keep yourself. I suppose these people feel that the “unhindered” are more deserving of the opportunity to eat outside the house than those who are in some way “impaired.” If not, they are not just inconsiderate, they are also hypocrites.

Yes, there are places I don’t take my own kids, who are each totally capable of wrecking a high Mass in their own way. We did not go to the tea shop I’ve been dieing to go to for Mother’s day because one look at the interior on the website alerted DH to the number of things the baby would be in danger of breaking, never mind whatever general mayhem he might set in motion. I can’t afford to eat in the kind of restaurant BH’s occasional loudness might really disturb, but if I could I might ask for a very early sitting, or a very late lunch - timing it when the fewest people would be around to be disturbed, if I thought it was a good idea at all. That said, those places are few. He goes everywhere with me and if anyone doesn’t like it the only reason I would not ask them to kiss my *ss is that they would not be good enough to.”

I read another comment on a similar issue that suggested parents of autistic children were too personally involved to see how these companies (airlines, restaurants) could be justified in their decisionmaking.  Well, Spindlewand doesn’t have an autistic child, and she seems to have a very clear understanding of the heart of the matter.

 Art by Eric Drooker

What an entitled and snooty place the world is turning into!  While following the comments on a thread at Autismvox, this article, about a Canadian restaurant asking a family to leave because their autistic daughter was having a meltdown, came across my radar.  It was blogged about by Renee at Womanist Musings and subsequently by Kev at leftbrainrightbrain.  The comments and reactions to the original story left me feeling angry and ashamed to be part of the same species as some of these people who seem to think the disabled should just sit home and rot so the ‘better behaved’ folk can live in their perfect little bubbles.  The patron who refused to pay until the family was removed from the restaurant just disgusts me; I hold them more at fault than the restaurant manager.

Here are a few things that some people need to get through their thick heads:

1. Many autistic individuals are unable to communicate.  Sometimes meltdowns happen because the individual does not have the means, which neurotypical people often take for granted, to express: fear, discomfort, distress, disappointment, anxiety or dozens of different emotions and sensations.  This creates frustration that heaped on top of the other environmental stressors are the recipe for a full-scale meltdown.

2. When an autistic person gets into the meltdown state, they are not ‘acting out.’  They are experiencing a physiological response that they are most likely unable to control.  This is not a conscious choice or bratty behavior, and to some degree it happens to all of us even if not as intensely.  According to Mary Sheedy Kurcinka in Kids, Parents and Power Struggles, “When confronted with threatening or frustrating situations, stress hormones surge through our bodies, triggering the brain to be ready for ‘fight or flight’…You’ve been emotionally hijacked.  Your stress hormones have created what’s called ‘neural static.’ You can’t think straight…instead you react instinctively and reflexively.” (Kurcinka, 37-38) 

3. When the parents of an autistic individual are faced with a meltdown, it is stressful for them as well, and their focus is naturally going to be, and rightly should be, on helping their child to become calm - not on someone else’s distaste at being confronted with unpleasantness.  Stares, snotty remarks, threats and forced removal do nothing to help the situation, but instead make things much worse and make it that much harder for the parents to do their job.  It creates neural static in the parents and makes it harder for them to think of the best way to defuse the situation.

What would help in these situations can be as simple as six little words: “Can I do anything to help?”  That’s it.  Maybe the parents will say no, but a moment of support and compassion can help soothe the situation enough to bring that stress level down.  And it may take more than thirty seconds, which in the age of instant gratification is, I know, a mortal sin.  But society needs to get a grip.  The disabled have every right to be in public just like everyone else. 

In a similar situation, I may have taken my son out of the restaurant, but he’s only seven.  I can just pick him up (usually) and go.  But when he’s a little bigger, I may not be able to, so should I lock him away so that someone with puerile and unrealistic expectations can go to a family restaurant for a quiet and peaceful meal?  News flash: where there are kids, there will not always be peace and quiet.  Perhaps if that’s what someone needs, they should not go to a ‘family’ restaurant, or be in any public place for that matter.  I hear that bomb shelters are pretty soundproof.

We went to a wedding a couple of weeks ago, and one of the guests was there with her two year old.  He wasn’t autistic, just two.  He cried through most of the ceremony and was all over the place at the reception.  He even tried several times to run into a party in another room (I guess they had better music).  At no point in time did anyone give her a nasty look.  On the contrary, several people (including myself and my husband) actively tried to help out to give her a break so she could at least grab a bite to eat.  If people would just extend that same compassion and kindness across the board, the world would be a much nicer and less stressed out place. 

It’s a pretty cruel irony that the majority of autism diagnoses being made are for little boys.   We live in a world that is generally less tolerant of boys than of girls, yet these poor boys have it even harder.  Think about it.  If a little boy and a little girl were engaging in the same behavior - throwing rocks, for example - the boy might get yelled at, chased, or maybe spanked by his parents.  The little girl would probably be reprimanded more politely and gently, maybe a finger would be shaken at her.  From a fairly young age, boys start to be challenged by their peers much more aggressively than girls (although that is rapidly changing, I’ve noticed).  At my son’s age - seven - boys will already start with shoving and physical intimidation, whereas, I think it starts a little later with girls. 

I remember having a conversation with my brother years ago about how he noticed his reactions to his own children.  He said that he was often more stern with his son because he wanted him to ‘toughen up,’ while his daughter was often handled more gently.  I think it is fairly typical from the earliest ages to want little boys to learn to ’suck it up’ and be strong, so we tend to treat them more harshly.  When you’ve got a large population of boys who don’t understand the rules, well, we all know where that’s going.

I seriously wonder if Jarett Farrell had been an autistic girl if the outcome would have been different.

I don’t mean to say that autistic girls don’t have it hard or that girls in general don’t have their own challenges ( I have a daughter, too) but I think as far as tolerance goes, boys get a bit cheated.

And yes this has everything to do with the kid at the beach the other day and the young woman at the beach who made a gesture like she wanted to hit my son because he was kicking sand too close to her.  The summer has started off pretty rough so far, but I don’t think it’s fair for me to just ban him from the beach either.  We paid our dues and he has just as much right to be there as anyone else, without being threatened or called names because he’s autistic or because he’s a little boy.