That e-mail I shared with you earlier this week? The Best e-Mail in the Whole History of Ever? The young woman who wrote it has agreed to let me do an interview. Here's the best part: y'all write the questions.My new BFF, who we'll call Kim, is 20 years old, about to graduate college, and has an Autism Spectrum Disorder. If you read her letter, you know that she is very bright and very well-spoken. The poor girl already can't get rid of me. When she's thirty I'll probably be emailing her questions about Little Dude getting his driver's license.
Now, obviously, she doesn't have a magic wand. Or if she does, she hasn't mentioned it. So I'm not expecting her to answer questions like "how in the hell do I get my autistic child to poop on the potty?" Yes, it's a pressing concern for me. But, again: no magic wand.
Speaking of not having a magic wand, unfortunately, she probably can't tell us what your nonverbal child is thinking. On the other hand, maybe she can. Maybe she knows what's going through Little Dude's mind when he's hyper-focusing on Lego minifigures, spinning them through his fingers. You know what, let's ask her. The worst she can say is, "look, you crazy lady, I agreed to be interviewed, but I am not a freaking psychic."
Also, obviously, she can't speak for all people with autism; she can only share her own experiences. Here's an example of what she can answer: I already asked her if she remembers being told that she has autism. She said yes, and that when she was diagnosed, the neurophysiologist had explained that her brain is wired differently. Her brain isn't bad, just different. She wrote to me that "having a word for it was like 'oh, there's an explanation for what's been going on. Neat. That's a relief.'" She also remembers a conversation with her mom where she learned that it's not polite to call the other children neurotypical.
See? That kind of advice is gold. We're not keeping any secrets here, but I've never sat down and had That Talk with Little Dude, either. He's only five but he's wicked smart and I know I need to work it in soon. And I will totally explain that it's not polite to call other people neurotypical. Gold, I tell you.
So, what have you always wanted to know about having autism? It's okay if you're not a parent of an autistic child. It's autism awareness month, so if you just have a random question, we're all about raising awareness.
Leave your questions in the comments. I'll sort through them, edit, and e-mail her a condensed list. She's in college, so she has other things to do besides answer a hundred questions from us. Although she's probably not at the frat parties because she still hates loud, crowded places. (Oooh, yet another bonus of autism from a parent's perspective.)
A question for "Kim" from the mom of an awesome 6yo w/autism:
ReplyDeleteWhen you were my son's age, were you aware that you didn't make and have friends like the other children you went to school with? If so, how did that make you feel?
So I guess that's 2 questions, oh well! Thank you!!
I'm wondering if this is the same girl who has been interviewed on TV. I know you don't want to name drop, so I'll just share the story of the girl of whom I speak. Her name is Carly Fleischmann. Here is her blog for anyone who is interested in reading a true success story. Her dad rocks, too! http://carlysvoice.com/
ReplyDeleteThat is awesome! Don't have enough brain cells firing yet to come up with my question(s), but just wanted to say Yay! and thank you!
ReplyDeleteWhat is the best piece of advice or support your parents gave you? If you could go back in time and tell your parents one thing about parenting you, what would it be?
ReplyDeleteI also cheated and squeezed in two. :P
That's an excellent idea! I'd also be happy to answer any questions regarding Daniel who, for all intents and purposes, is leading a completely normal life at this point! It's really all about giving hope...to me.
ReplyDeleteI love Lori's question. I have a 8, almost 9, high functioning autistic son (also a Daniel). He will sit for periods of time especially on the trampoline and just look off into space. Does "Kim" ever remember doing that and what kind of things were going through her head? I like to think that he is contemplating Einstein's theory of relativity:-). And one more if I may, did "Kim" have speech delays and if so, did she experience times of frustration because she was unable to get her point across and is there anything that helped her?
ReplyDeleteI could ask about 50 more questions, but I will stop.
Ooooh ditto on the speech delays question! My daughter is not ASD, but has a LOT of speech issues. I would love to know anything Kim has to offer when it comes to helping with the frustration factor!
ReplyDeleteI'm a mom of an awesome 10you son with high functioning ASD. I've asked him this but never get answers: What does he dream about at night? Is he "neuro-typ" in his dreams? Is his speech fluent? What are they like?
ReplyDelete*My Jack always just looks at me like I'm a moron when I ask him about it haha.
How old were you when you found out about autism, and how did your parents share this with you? Thank you!
ReplyDeleteI'd like to know how you get some kind of diagnosis as an adult. I was raised by doctor-averse parents who ignored the school counselors when they said I should get checked out for ADD in the '80s, saying I was just a normal kid, I was just bored, I obviously didn't have focus problems (when you mentioned hyperfocus, a little lightbulb of OMG I DO THAT went off over my head, and I have insane perseverance issues as well as almost a complete inability to read facial expressions), but as a consequence of not having seen doctors for anything but serious illness or vaccinations, I don't know how to breach the subject, or even what kind of doctor to ask.
ReplyDeleteIt doesn't help that I have almost no social skills, since my parents just allowed me to spend my entire childhood inside books and my own head. I'm 30 now and I'm wondering if this is the reason I haven't been able to get anywhere in my career, and if some kind of medication would help me in any way. But the more I read, I'm not sure if it's ADHD (like my elementary school counselors thought) or mild Asperger's, or some combination of the two, or maybe if I really am completely normal and just looking for an excuse for not hustling/schmoozing/whatever it is people who like people do (what my family would likely say).
I guess I probably shouldn't ask you, as this isn't really related to raising kids with these kinds of problems, but I don't really know where else to go with this.
Is there something your parents did that you'd like to warn other parents to please for the love of puppies not do?
ReplyDeleteI would love to hear any advice for parents in helping their kids make friends. My son is 7 and loves other people, but struggles with interacting appropriately at times. What did your parents do to help you with social interactions? Can you give ideas on what I should or shouldn't do to assist my son in making good friends?
ReplyDeleteThanks a million!
From the mom of an almost 6 year old with autism: "Did you ever have a hard time with brushing your hair and how it felt/hurt? If so, what helped make hair care less stressful?"
ReplyDeleteWe have tried every product to help with tangles and every possible way of brushing and styling, and while it helps, hair care is still almost traumatic. Even when we take her to a professional, she still ends in what we call "meltdown mode" where it's just too much. Everything hurts her, washing, brushing, putting it up, leaving it down (where the hair brushes her shoulders, etc...
Hi. LOVE YOU! My question: at about what age were you able to go from "my way is the only right way, and I need to tell people that there way is wrong" to "I understand that others do things differently, and even though I still think they are wrong, I will not point that out to them" John Elder Robison talks a lot about this kind of thing, about finally understanding that other people have feelings of their own, and that what he says can affect them. It came to him later in life, so just wondering if you had an 'aha' moment like that ever.
ReplyDeleteDoes/did this inspiring young woman ever grind her teeth and if so, why? Seeking sensory input, stress, headache or other pain? Or??
ReplyDeletewhat is the most difficult yet rewarding skill that you have learned?
ReplyDeleteWhat best helped you to understand and explain your emotions? What helped you with understanding the emotions of others around you? If you had fixations, how did you balance them in your life or work through them? I'm looking for ways to help my 7 yr. old son who has Aspergers. What was the expalanation that made sense on "its rude to call other kids neurotypical". (I was like "it is? Oh yeah, I guess so.")
ReplyDeleteI have a high functioning ASD son who is adopted. We have told him in 6 year old terminology that he is adopted and that he was a drug exposed baby. I don't want to drop too much in his lap to process but he has to be wondering why he is different or does he notice? Should we have that conversation yet? What do I tell him?
ReplyDeleteMy son is seven and has been described as "Asperger-ish." He is able to learn social rules, but I have to be very blunt with him, like this: I know that you may like doing X, but it's really annoying to other people and it makes them not want to be around you when you do that." He just doesn't pick up on the subtle messages NTs use to spare the feelings of others. I feel like I am being mean and insensitive sometimes, but it also seems unkind to send him out in the world doing things that will make life more difficult for him. Kim, how did your parents explain things like this to you? How would you like to hear these lessons so that they don't hurt your feelings but you still get the message?
ReplyDeleteI am a music therapy student at the University of Iowa - this is a question for both SRMM and her new BFF AND anyone else who has some insight.
ReplyDeleteIn school we spend A LOT of time talking about work and interventions to do with Children diagnosed with ASD. Have any of you and your children had music therapy? How accessible is it? Do you find schools providing music therapy as part of an IEP of FEP or are you more on your own? How about insurance and reimbursement? If you have had music therapy as a related service for you, your child, or your family - what has been your experience? Best intervention/activity? Advice for a future profession working with those diagnosed with ASD?
**BREATHE!**
Ok! That's all - thanks!!
From someone who does not (at this time) have a child diagnosed with ASD: What are some things that neurotypical children or adults have said or done to you that have offended or hurt your feelings (or, perhaps, your parents' feelings)? What is the main thing you would like neurotypical people to know about ASD?
ReplyDeleteI often wonder with all the therapies out there ... and some seem awesome and some seem like voodoo ... what does she think helped her the most? Had there been less or no intervention, what does she think her life would be?
ReplyDeleteContext: Some of the mothers and I have talked about our son's speech therapy. My son is talking way more now than he was 6 months ago. How much of that has to do with therapy and how much has to do with the sheer passage of time --is he simply 6 months further along his own natural path?
I'm certainly not going to take him out of speech -- but I wonder how much difference it actually makes??
LOVE this idea! I have a six year old with high functioning autism and also wonder if/when/how to discuss this with him. At this point, he has no idea and I don't think he even knows the word autism. But he has a one-on-one TSS at school and various therapies, so maybe he knows a lot more than I give him credit for? At what age did you get a diagnosis?
ReplyDeleteTremendous idea SRMM. Kim, did you have difficulty cuddling with your parents (esp. Mom) and expressing affection to them? If so, has this changed over time? And if that's so, what strategies may have been used to generate more closeness between you? Being able to make a loving connection to a child with ASD is my greatest concern. Thank you.
ReplyDelete~physicsmom
I have a 8 1/2 year old who has SPD and, depending on who you ask, Asperger's or PDD-NOS. I would love to know what were some of the things that her teachers did that made the most difference? Were there different strategies that helped in a classroom that didn't help at home and vice versa? We are home schooling right now because he can not function at all in a traditional classroom but I might like to transition him back eventually.
ReplyDeleteI would also love to hear any advice on the subject of making friends. My sweet, soft-hearted 5 year old aspie has never had friends, and is on the verge of realizing his loss. Help!
ReplyDeleteVermilion, this link might help: http://www.aane.org/about_asperger_syndrome/asperger_syndrome_diagnosis_adults.html
ReplyDeleteI'd like to know if "Kim" finds her peers annoying? My 9yo aspie thinks he's smarter than everyone and gets highly annoyed - especially with peers, when they just don't have the level of knowledge on a subject that he does.
ReplyDeleteSomething I've always wondered about and can't get my 12 year old to explain to me. I KNOW that the muscles in his eyes work. And I KNOW that it isn't a natural thing for him to look at someone's eyes when he talks to them, like it is for me. But, WHY can't he do it when reminded that it's important? What is so aversive about looking at people's eyes/face that he refuses/can't do it?
ReplyDelete@SusanF
ReplyDeleteI just read "Look Me In The Eye" by John Elder Robison, an adult with Asperger's. He gave a good explanation of the eye contact thing: that looking at someone in the eyes while talking to them gives him too much visual input and makes him uncomfortable. And that he doesn't understand why everyone thinks it's so important that we stare at each other's eyeballs. ! Makes sense to me!
Here's my question:
ReplyDeleteWhat do you think about the growing protest I hear from autistic adults and their sympathizers that the movement to "cure" autism is an "attack" on autistic people? I don't get that at all. I would love to see my daughter get through a day without sensory discomfort and emotional anguish--and then maybe we could enjoy life and experiences together like other families do.
What advice would you give a teacher about introducing new people and changes to routine in the classroom? About helping a student through upsets in class?
ReplyDeleteHI!
ReplyDeleteKim, did u have a social skills group growing up? as a high functioning person, at an older age did u want to go?
Hi, I discovered SRMM about a week ago, and wow do I wish you lived next door! You make me laugh and cry, about equally....thank you.
ReplyDeleteQuestions for Kim include:
* How best to tell of the diagnosis? My amazing Aspie is 7 (almost 8), and doesn't seem yet to understand that he is quirky, 'different' than the other kids, doesn't have any/many friends. This cheerful obliviousness is wonderful, but I figure he's going to wonder sometime, right? And I don't want it to be stressing/depressing to him.
* Also, how do we bring him back to the 'real world' when he's out in his amazing imagination (topics of focus include NFL football, Star Wars, Lego....). He's very verbal, but I'll ask him something (mundane) and will get an answer back about "General Grievous", as if he were part of the conversation. I don't want to stifle his amazing creativity/imagination, but sometimes you really do have to be in the real world with everyone else. Suggestions?
Thanks!
Autistic spectrum disorder is something where I have met a reasonable number of people who have self-diagnosed, or try to diagnose others.
ReplyDeleteDo you take issue with this? Is it annoying? Do you think that it is valid in some cases?
4/5 people I know who have autism seem to be just as normal and successful as you, and before they told me, and I had no idea they were diagnosed autism. Since I am a college student, am I seeing a very biased sample of people? Do you know of people who have enough difficulty that it has hampered their ability to fulfill their goals?
(The other 1/5 is also doing quite well, but it was apparent that they had more trouble socially)
If you are interacting with someone who has autism, should you act differently? Would that be helpful or insulting?
I, too, would really like to know how I can help my son (7 1/2, Aspergers) to listen about the social stuff we are trying so hard to teach him. I try to explain it, and I try to just say "this is the rule" but he just can't seem to do things like "hold still and face me when I talk to you." Or, oh, when I'm COOKING at the stove is not a time to hug me.
ReplyDeleteAnother thing. Stimming. He hasn't had any obvious stims until recently. I'm torn on trying to redirect this stim (hopping/flapping) or just letting it go. Advice?
I am a child psychotherapist and I specialize working with kids on the spectrum. Why is it that we can work together on tools to help them and then they do not use them? What or how can I present it differently to the children in my office so they might want to try using them?
ReplyDeleteAny ideas on how to talk to my aperger 9yo about things like sex, drugs, and other things that his brothers and sisters have been talk to about way before him? All serious discussions seem to turn to some far away land of make believe and can not ever be finished.
ReplyDelete