Here’s the thing–anytime I mention that “My son is labeled as high-functioning autism” or “My son is labeled with Asperger’s,” I get the response, “Oh, I know someone with Asperger’s.”
We all seem to know someone (some more closely than others ;)) who is labeled with Asperger’s. Or we know someone who has a child with high-functioning autism, or someone we went to school with who had major signs of being on the spectrum, or your second cousin’s uncle’s sister’s best friend’s daughter was diagnosed with it just last year.
Whatever the case, reach out to them to ask some questions. Maybe you’re curious about what it’s really like and you really want to know more. If you read my blog, maybe you think I’m completely blowing this whole thing out of proportion and you want to know the real story.
First, why should you do this?
I believe education is one of the most important and fundamental parts of creating a more accepting and loving humanity.
So, if you seriously want to understand something, learn more about it.
You might not know much except that these children seem to scream a lot, have odd mannerisms, they’re kind of rude, and they talk about the same thing over and over again. What do they really have to deal with? They don’t know what’s going on around them. Or do they (they do!)? These parents are just doing it wrong. Or are they (they are and they aren’t)?
Here are some questions that can get you started on your journey to connecting and understanding.
But first, there are rules to follow!
Rule #1: You have to go in with the intention of simply listening and asking deeper questions. This isn’t about you (although it totally is); it’s about them and your understanding of their story.
Rule #2: You are not there to fix them. You are not there to scold, judge, or chastise them (this happens more often that I’d like to admit). This is not the time to say, “Have you tried . . .” Refer to Rule #1.
Rule #3: Use your very best manners. A “thank you” at the end of your time together will be perfect and beautiful. If you’d like to throw in a kind validation, that’d be swell. For example you might say, “After hearing your story, I can see how difficult this journey has been.” Or, “You’ve done an incredible job and I’m inspired by your diligence, patience, and hard work.” Or something.
How to get started:
First, determine who you would like to interview.
Note: I strongly recommend that you do not interview someone who does not have an official diagnosis or refuses to admit their child is on the spectrum. This is a huge thing that I see more often than I’d like, and I’ve been guilty of it myself. Children will sometimes display “unmistakable” traits, but the parents will not label their children except to say that they do have difficulty in certain areas.
Next, let them know why you’re calling. Ask permission first before you bring out your questions. It might go something like . . .
Hello, [NAME]. I read this WAY COOL blog called Living With a Different Brain.* This lady writes about raising her son who is diagnosed with Asperger’s. I remember one time that you mentioned your daughter was diagnosed with Asperger’s, is that correct?
I’d really like to ask a few questions about your experience with raising your daughter. Would you be okay with that? I’m very curious about your journey and really just want to learn more about you, your daughter, and your family. I have no hidden agenda except that I want to educate myself. The blog writer recommended a list of questions I think will be interesting, and I hope you’ll sit down with me to chat (offer to buy them lunch or coffee if you’re able to).
If you would like to chat with me, and I hope you do, we can stop at anytime, and you definitely don’t have to answer any questions you don’t want to. I’m guessing it will take about twenty minutes, but it might take a bit more or a bit less. What do you think? Would you like to hang out with me and share part of your story?
If they say yes, schedule a time right then! If they say no, say thank them for being honest. Add that you appreciate it and if they’d ever like to chat to please let you know.
(*Please note this is not a blatant plug for my blog; it’s a way to let them know that you have some relevance, interest, and a reason for asking.)
The List of Questions
Can you tell me when you first noticed your child was different?
When did you get your diagnosis?
Does your child take any medications? How did that go for you?
What was the hardest part of that?
What’s your favorite thing about your child?
What has been the most difficult part of raising your child?
What has been the easiest part of raising your child?
What are the three favorite lessons you’ve learned from raising your child?
What do you want me to know about how it’s been raising your child?
How can other people help parents who have different-brained children?
Is there anything else you want to share with me?
For a diagnosed Aspie:
Did you always know you moved differently than other people?
When did you figure it out?
Do you have an official diagnosis? If so, how do you feel about it?
What is the hardest part for you about your Asperger’s (or whatever label they carry)?
What do you love the most about being you?
Who has helped you the most in your life?
When I say, “Someone hurt you,” what is the first memory you think of?
What are your greatest gifts?
What are your weakest areas?
What to do when the connecting is done…
Express gratitude! Wipe your eyes if you’ve shed tears. Get them a cup of tea and tissues if they shed tears. You both just shared your hearts and it’s the most beautiful part of being a human being.
This journey is hard and there aren’t too many people reaching out to me to ask me how I’m doing as the mother of an Aspie. I needed some relief, so I just started writing it down each week. I want to share my story so much that I pay for a website so I can see if other people want to be a part of my story.
Mostly people seem to want to “fix” us (parents and Aspies alike). They want to make suggestions and change the way I’m doing it, cuz gracious knows that everyone else knows better (not).
Thank you so much for takin time to read about my life. I absolutely hope you connect with someone who is on the autism spectrum or knows someone who is. We all appreciate it.
And please post your results and experience over on the Living With a Different Brain Facebook page if you do take the plunge! We’d love to see how it went and share in what you learned.
With full gratitude,
Note: I’m excited to share my answers for these questions, but will wait until next week. I want to save some of the “suspense” of the answers in case you would like to ask someone else these questions. All of our answers will be different, but I suspect we’ll find a common thread between our stories.