One of my first concerns over my son displayed as an infant. He under no circumstances would tolerate doctors or nurses poking and prodding at him. I talked with my sister-in-law, who happens to work with children and autistic children for some advice. She suggested desensitizing him. Lots of roleplay, books and videos.
I bought a doctor’s kit and we proceeded to examine first every stuffed animal in the house. Then he examined me, then I him. At the doctor’s office, I would ask to be examined first, and I would smile and repeat about how helpful doctors and nurses were. At my appointments, I would ask the doctor (and she is wonderful) to talk through the exam, and then to give my son a mini-exam. We got books at the library, then the Doctor Calliou video. The results have been great.
We still have anxiety at doctor’s appointments, but if they take my suggestions and work in a certain order, things get done! If the medical professional is relaxed and kind, takes things slow, they will get the exam done. What irks me is the people who are amazed that I can get my son through a doctor’s exam the way I do. Well, it doesn’t irk me until they display disbelief more than once.
Just this week I had a nurse practitioner seem almost disbelieving that my son had autism because he allowed her to look in his ears. I explained we had done quite a bit of roleplay and work to get him to that point. She didn’t seem to care much, then still proceeded to say how odd it was he allowed the exam. I got irritated. The tone wasn’t amazement at how he had progressed, but more accusatory that my son didn’t have autism. She kept saying he was better than most three-year olds. But honestly, how many other three-year olds have parents who spend HOURS teaching them how to behave at the doctor’s office. I felt like asking her, “does he look at you?” “Is he talking to either of us?” “Do you see him fidgeting with his hands?”
He behaves in the doctor because I found a way to make it work. And it was work, lots of it. We did desensitization, roleplay, finding routines and order of business that works. So I really resent it when I come in, explain he’s autistic, and suggest the way the exam will work best, and then get treated with disbelief.
I’m proud of my son, and myself over the progress we’d made. Maybe I just wanted a pat on the back instead of disbelief. But most of all I just want to remind everyone that autistic people can learn!
Miracle Baby 
November 24, 2009 at 7:25 pm |
Welcome to our world. I see this all the time. If autistic people don’t fit some dramatic and extreme stereotype, then we can’t be autistic. Drives me crazy.
Amazingly enough, in the minds of some people, I am not autistic because I’ve earned a master’s degree, held down several very good jobs, bought a house, gotten married, raised an NT kid, use a computer, and speak in complete, recognizable sentences. Apparently, Amanda Baggs (who has been diagnosed LFA) has been accused of not being autistic because she can work a video camera and make a YouTube video. On her website, she’s posted tons of paperwork to prove that she is who she says she is. No one should have to do that.
It’s very hard to know what to say in situations like the one you’re describing. They’re so infuriating. You can’t educate such people, because they’re convinced they’re right. The only thing I can ever think to say is, “If you continue to question whether I’m autistic, we can’t have this conversation.”
December 31, 2009 at 9:02 am |
Great post.
I have two daughters who I suspect have NLD. I say suspect because I don’t have a background in this sort of thing, and I’ve just been trying to figure out what’s up with their difficulties at school. What you did with your son is what I’ve always done with my children.
The thing that bothers me is that people might think that it’s crazy that I consider that they have something on the spectrum, I could be wrong, and if I get them examined the things that they do might be interpreted differently than they otherwise would (otherwise nobody would blink an eyelid, but in an examination setting the same things get interpreted as abnormal.)
I don’t know what to do. My doctor wants to proceed cautiously. I keep hoping that they will grow out of it, or learn to manage better. In the beginning I felt a despair but now it’s just something that niggles at me.
January 21, 2010 at 11:20 pm |
If you’re in doubt, get tested. Great post and thank you for sharing Jennifer. Sorry I missed moderating this till now, my bad!
January 21, 2010 at 11:22 pm |
Just an update too. He smiled at the Dr. today. This was a first, and I think wonderful progress!
January 22, 2010 at 2:54 am |
Trying to convince someone your child is autistic…..yeah cause this journey is so enviable and really who wouldn’t want to figure this puzzle out over and over every single day? JEEPERS!
Tip…one thing that works well with our son with regard to doctor appointments, outings, changes in the routine, etc. has been social stories. My son is a lot more amiable to situations if he knows what’s coming, who’ll be there, what will happen and any other details that you can include. We make different little booklets to cover a variety of situations like, “My New School”, “Going to the Doctor” etc. We include actual photos of buildings, people and rooms because he operates better with “real life” photos but you can print off pictures, draw them or cut them out. It all depends what your child will respond to best.
Just a thought….maybe it’ll help.
January 22, 2010 at 12:20 pm |
Thank you Louella, you’ve given me some wonderful ideas to add to the mix. The dentist is even harder than the doctor’s is. I appreciate your candid and thoughtful reply!
January 22, 2010 at 3:55 am |
Melissa, there’s research just published here in the Netherlands. I don’t know if it’s available/translated in English yet., They have found that babies can reliably be diagnosed with autism. I think that usually you have to wait till they’re older.
It means that mother’s can begin with gentle ways of preparing children for participation in society. Have you read Temple Grandin’s book “Thinking in Pictures?” It helped me gain a lot more insight into the autistic world.
Best of luck with your little sweetheart, and fantastic news about the smile!
January 22, 2010 at 12:17 pm |
I believe this study. Like I put in this blog: https://cadesmom.wordpress.com/2009/10/16/breastfeeding-and-sensory-integration/ I sensed signs in hindsight as early as birth. Now I never would have known prior to Occupational Therapy, and http://www.amazon.com/Out-Sync-Child-Recognizing-Processing/dp/0399531653/ref=sr_1_1?ie=UTF8&s=books&qid=1264176936&sr=8-1 that I was dealing with sensory issues. I’ll be perfectly honest, I had no idea what sensory issues were prior to my crash course with my son.
January 22, 2010 at 1:00 pm |
Well done for having breast feeding your child for so long. Here in the Netherlands, the majority don’t breastfeed longer than 3 months. After about one month they already begin cutting back so in the 3rd month there’s really a bare minimum of breast-milk being given.
The Mobi article was interesting. My children did like to be nursed, but I recognised a few other sensory issues. The now 9 year old wanted to be held in a fireman’s lift as a baby. She didn’t want to be held in any other way. People found it odd. Perhaps she had a sensory fear of falling. She’s always been sensitive to sound too, and we always made the room really dark with extra blinds when she needed to sleep.
January 22, 2010 at 1:09 pm |
It’s amazing to me how we as parents figure out our children’s unique needs, even when they are unable to tell us!
January 22, 2010 at 2:12 pm |
Unfortunately some people don’t follow the voice of their intuition enough. In the past people said to ignore it when a baby cries, otherwise you’ll spoil him or her.
In the first three months, D. my baby, could of cried in the evenings for hours, unless I paced to and fro, carrying her. I knew for sure, because if I stopped she would start crying again. It was tiring but I did it. It seemed to be a long tiresome time. Yet in hindsight, when I consider that she for some reason needed the comfort of that motion for that relatively short phase, I’m glad that I did it.
All children need us to listen to their signals.
I need to find out about social stories, thanks for the tip Louella!
January 23, 2010 at 10:26 am |
Ugh, yea. I get that a lot, both offline and online; if I am doing well. If I’m not doing well, I get treated like an idiot. If I’m doing well, I get told I’m not autistic. It’s very frustrating when I get that response; especially on the occasions when I get that reply from people in the autism community! Seriously, nobody should be telling anybody else if they are autistic unless they are a professional who has performed testing and is qualified to diagnose.
January 23, 2010 at 4:12 pm |
My doctor didn’t think that there was anything wrong. At the time I was grateful for that response because I wanted to hear that there was nothing wrong.
However, despite me trying to train my daughter to understand social situations, I felt that I had to do something because she just doesn’t know how to make friends, has a level of naivety, and basically needs to be understood.
i mentioned it to the audiologist at a hospital. They noted in their report what I had said about suspecting NLD, but concluded that my daughter behaved normally. At school they do notice how she’s struggling, but I got the impression that they suspected that there was something wrong with the way I am raising her. I have read that there are people who make a diagnosis after two interviews. I don’t think that it’s possible to get a proper impression after two interviews. I’ve left a message on the answering machine at that place to ask about it. Unfortunately the alternative is to be put on a very long waiting list for the hospital, but then at least I would feel that she had been properly investigated before a diagnosis is made.
March 27, 2012 at 11:07 am |
I know this is an older post, but I’ve been reading your blog in my down time now and then over the last day and just love it. I love how down to earth you are and how loving you are.
This entry struck a chord with me because I have this issue all the time as well! Our son is almost 8 and he is very outgoing for an autistic child. Because he’s learned these repetitive behaviors (he tells everyone he meets that his name is Colin and then usually asks for a hug), people constantly question me as to whether or not he’s actually autistic. Oh, he’s just an active kid. He’s just a little delayed. He’s a sweetheart! these are all the responses I get. Okay, but did you also notice he asked you if you love his Bop It? And he told you he missed you so much – have you ever met before??
Most people have to spend a little more time with Colin before they pick up on what others view as “quirks”.
He was originally diagnosed as ADHD and when my husband and I met, I asked if Colin had been tested to see if he was on the ASD spectrum. He told me that the schools had told him he had to wait – it was too soon. Colin was already 6 at that time.
We took him to a specialist and were told it could take several visits for a child of his age to be diagnosed. After 30 minutes of testing, the doctor was sure.
I’m rambling… but I feel where you’re coming from. And I’m so glad you were able to find out more at an earlier age to help him.
I noticed in another post that you’ve gotten insurance to approve your ABA therapy – that’s what we’re trying to do now. It’s not covered and we desperately need it.
I look forward to reading more about your journey.
March 27, 2012 at 11:30 am |
Thank you! This is why I had started blogging to begin with. I regret that I haven’t kept up with it as I should. I had some reasons, but I think I need to start putting stuff back out there again.