Autism in public places

This article  ( link ) is getting a lot of buzz today.  It talks about a huge issue in autism---how do we balance our childrens' rights to be out in public with the rights of those they might be somehow disturbing?

My feeling is that common courtesy on both sides goes a long way.  I would not take Janey to a quiet restaurant or movie, because she would not be quiet.  If I were paying for a movie or fancy dinner, which in these days is a financial stretch for many of us, I would not want to be unable to enjoy myself because of noise.  That includes of course other types of noisy people, like those who talk during movies or those who get drunk and disorderly in restaurants.  However, if a place is public and has a built in noise level, or if it's a place Janey needs to be and has every right to be, I expect others to be understanding of her.

I have burned into my mind for all eternity two times that Janey was in a place she had every right to be and she and I were treated rudely.  One was on a commuter rail  ( here's that blog entry ) and one was in a doctor's office she had an appointment at ( read about that here ).  Both incidents still make me cry to think about them. They were, to me, clearcut examples of how people should not react to someone with autism, someone with differences.

However, there are many, many times Janey has been treated with kindness and understanding.  As she gets older, people are more able to see she is different, and they see that we are all trying hard.  Tony takes Janey to stores a lot, and at the stores where she is a regular, she is treated like a star, almost.  She usually gets a lollipop at the register, and she gets a lot of smiles.

Most of the world, though, is in-between.  There are so many times that I am made upset not by outright rudeness, but by staring, or disapproving looks. The ultimate example of that happening is in this post ( link ). I am not a person who is going to put Janey out there into situations to prove a point.  Nothing in this world makes me more uneasy than being the center of attention or being singled out.  But short of keeping Janey home at all times, it's impossible not to get into such situations. Janey makes odd noises.  She cries sometimes.  She jumps around.  She talks oddly and repeats phrases.  If that bothers people, then I do have a problem with that.  None of those actions of hers hurts others.  None of them are illegal, or keep others from doing what they need to do.  I am not going to hide her because she might make someone uncomfortable.

The article that got me thinking gave a great example of a case where I would draw the line, where I would remove Janey from the situation.  It told of a man with autism that would eat food right out of the hot food bar at Whole Foods.  That is a health and safety issue, and a rudeness issue.  If Janey starts to do something like that, I firmly tell her no, and if she continues, we leave.  I don't expect exceptions to the rules for Janey.  She needs to learn what she CAN learn, so that she CAN be out in public.  But her just being autistic, without doing anything unhealthy or illegal or wrong, is not grounds for her not being welcome in public.

In a perfect world, everyone would be striving to be as kind and fair and understanding as they could.  That's not this world.  I need to be strong enough to stand up to the jerks out there, and also understanding enough to find that balance between Janey's rights and the rights of others.  It's not easy, but then again, not much about this autism parenting gig is.

Waited a day

I waited a day to write about something that happened yesterday, until I'd had a chance to calm down. I have now, and it's not as fresh and hurtful, but still very much so.

Janey had an appointment to see the psychiatrist that prescribed the medication for her a few months ago, to check on her. We went in by train, which is a whole story in itself for another time. The appointment was in the Internal Medicine department, as the psychiatrist is not at that office all the time. So we went in there to wait after checking in at the main desk. Janey was crying. She is scared of doctor's offices or anything that looks like one. I was holding her and trying to comfort her. She was a little loud, but in my eyes, no terribly so. It had probably been only 3 to 4 minutes when one of the three receptionist there came over to me and said (I'm trying to recall the exact words) "You'll have to wait in a different place. We have patients here and they can't have that kind of noise---she's too loud. She can't be here" It was one of the very, very rare instances I was so upset that I didn't use my internal censor that usually keeps me from saying close to what I think. I said "SHE is a patient here. She is here to see a psychiatrist BECAUSE of her anxiety and crying. There is no other place for me to wait. She is severely autistic, and I can't totally control her crying". Or mine either---by that point I was crying hard. The woman and the other two receptions jumped all over themselves to say they were sorry. I am assuming they thought that I was the patient, and I had just brought along my bratty kids for fun. I really hope they didn't know JANEY was there to see a psychiatrist. And even if they did, I can't possibly imagine how her crying would disturb patients, who were behind heavy doors and in their own rooms. And even if they did want her gone, they could have handled it a million better ways, like saying "Poor thing, she's having a hard time. Can I find you a place to wait where she would be happier?" What they did do is take us to a couple chairs far, far into the bowels of Internal Medicine, like a tiny waiting room for the psychiatrist. I sat there and cried and cried. I couldn't stop. I am sure I looked crazy, but I've always felt like a doctor's office was one place where I would be exempt from the stares, the angry looks, the judgements that keep parents of autistic kids from leaving the house much. I guess I was wrong.

I am trying to figure out if I should write a letter or make a call about this. Everyone says I should, but honestly, I don't think it would make much of a difference. It's how life is. What made me cry, I think, is realizing this is my life from now on, and worse, Janey's life. She is going to live her whole life in a world that has little understanding of people with mental illness or retardation. Maybe some parents would see that as an incentive to take on that world, but that's not me, at least not directly. I will protect her, keep her as happy as I can, but I'm not going to fix the world.

Rant about doctor's appointment

It was obvious last night Janey was pretty sick---she had a fever and barely slept, just cried a moaning cry all night, and she was refusing anything to drink---when she tried to drink, she screamed. I kept her home today and although I don't usually rush to go to the drs, I had a feeling I needed to, especially because she can't tell me what's wrong. It turned out she has pretty bad strep throat---it showed up almost instantly on the rapid strep test, which I guess usually doesn't happen. But getting to that result was just awful---I guess I've been lucky over the years, but I didn't my regular doctor and in fact didn't even go to my regular office---my doctor is part of a group that has lots of locations and I chose a nearer one for today. The nurse practitioner I got obviously had no understanding or sympathy for autism. She kept asking Janey questions, although I told her she would not get answers---I think she thought someone Janey was just shy and if she asked enough, Janey would answer. Finally she gave up on that, saying something like "I know you understand me, so tell if if you want to". I felt like screaming already at that point. Then she seemed very surprised Janey wasn't totally open to have her ears looked at, and after at first acting like I was crazy to immediately hold Janey down, saw quickly I had to. Then she tried to look in Janey's mouth. No way. She put in a tongue depressor and tried to sort of pry her mouth open. I said Janey would bite the depressor, and she shrugged me off. Janey did bite it, and had half bitten it off by the time I forced her mouth open enough to get it out. Then the NP tried a last ditch effort to stick those strep testing swaps in Janey's mouth. Janey freaked out, and when she got the swabs out, the NP saw Janey had bit the end off them. She sort of freaked and tried again to get Janey's mouth open, but I just put my hand in front of Janey's mouth and she spit them out for me, which she is pretty good about doing. By that point, the lady had had enough, and said she just couldn't do it, and would just give Janey medication without testing her. I said no, that giving Janey medication was so hard I wasn't going to do it unless I had to, and that I could hold Janey in such a way that she COULD get the swaps (I had told her this at the start, but of course, what did I know?). The lady left without talking, left the door open, and said in a loud voice "Can anyone helps me with a strep test on a NON-COMPLIANT PATIENT?" And then lots of muttered complaints about Janey. Finally, she got a medical aide to come in, a young lady who must be the brains of the office, and she did exactly what I would have done---held Janey's nose until her mouth opened, and then held her mouth open gently but firmly and got the swab nicely. I thanked her very much. The NP was obviously super annoyed by then. It was actually the medical aide who came right back in to tell me Janey did have strep.

Lots of ranting, but my points are a few---why couldn't the NP LISTEN to me and BELIEVE what I was saying? Janey DID NOT understand her, was scared to death, has no idea why she is there or why we want to open her mouth, is feeling sick to boot. And LET ME DO what I know works---it's not the NP's way, but I know Janey, and I know the quick and firm approach will save us all a lot of time and anguish. And DON'T call Janey non-compliant. She is 5 and she is autistic. I would have been fine with her saying just that---"could anyone help me a little with an autistic patient?" Autism is not a bad word. I know Janey's autistic---it doesn't upset me to hear that. And don't fall into all the old stupid beliefs---I felt she though I was someone speaking for Janey and preventing Janey from speaking. God knows if Janey could speak for herself, I would love it beyond all reason. I always let the boys speak for themselves at the doctors, from the time they could speak. They are both very confident and outgoing with medical people, I think partly due to that. But Janey can't. And I WILL speak for her.