On Friday's post, The Top Ten Things I'm Aware of About Autism, a commenter wrote:
Anonymous said...On my previous post, Bittersweet, a commenter, probably the same person (note the times), wrote:
I think that autism is diagnosed too easily...I really don't think social-awkwardness is a disease...some people are just a little different...
April 3, 2011 12:45 AM
Anonymous said...I did at first, wonder if they were a joke. I mean, really? Or that possibly this reader is confusing some of my posts about Cookie, who specifically has anxiety, with some of my posts about Little Dude. While I don't take these comments personally, I can't just shrug them off. To me, they highlight exactly why we need Autism Awareness Month.
I've been reading your blog for quite a while now...and from everything you've written about Little Dude, he seems like a normal little kid. Yeah, he might be a late bloomer on some things, but every kid is different... What makes you positive he has autism? From what I've read, he just seems like a regular little kid that's maybe just more sensitive than the 'norm'... Everyone has anxieties over school, friends, relationships, homework, etc...That doesn't mean something is necessarily 'wrong' with you, or that you need medication..Everyone has to deal with life, and what life throws at you, that's what growing up is all about....
April 3, 2011 12:23 AM
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| School psychologist, Qui Gonn Jinn. |
Then I wondered if I am romanticizing our situation in my writing. I often write about Little Dude's awesomeness. I don't need or want to write post after post about his flapping hands or the fact that he can spin a Lego guy between his fingers, rocking back and forth and making the same noise over and over, for an hour. I don't want to relive it every damn time he freaks out from being in the smallest crowd, or our inability to go to places that other families take for granted because it will trigger a panic attack.
I don't want to write it. You don't want to read it. Many of you are living it.
Parents of kids on the spectrum are so deep in our awareness of autism that we forget that there are people who haven't personally been touched by this disorder. Depending on a person's attitudes toward parenting, mental health, and modern medicine in general, not everyone is going to see that autism is all too real.- We don't know what causes autism.
- We don't know how to cure it, nor can we agree on whether autism should be cured.
- No one single technique or group of therapies helps all autistic children.
- Two words: vaccine debate.
So now you've got this big ol' mess of facts and myths, quackery and science, inconclusive studies and anecdotal evidence. The big news in autism, as newspapers and magazines keep pointing out, is that we know f**k-all about it except that the diagnosis rate is skyrocketing.
And then you've got my kid having what appears to be a tantrum on the floor of the waiting room.
And, you know, "he doesn't look disabled."
He looks like a kid behaving badly. I get it.
Short of putting him in a t-shirt that says "I'm not misbehaving; I have autism," I don't know what to do about that.
Autistic people don't, as a matter of course, look different from neurotypical people. Unless he's in full-blown Aspie mode, rocking and making his little noises, he pretty much looks like any other goofball kid his age. This is both a blessing and a curse. Of course it's great that he can "pass" for neurotypical. On the other hand, sometimes I wish there was something about him that signalled to other people to be more understanding, more patient, more tolerant.
Failing that, you can bite me.
We are doing our very best to help our son function as best he can, and to help his experience of the world be less stressful for him. Autism spans a range of behaviors; this is why they call it a spectrum. We are fortunate that our son is very high-functioning in most ways, and is even very gifted in some areas, but he will always struggle in other areas.
I agree 100 percent and have gotten the occasional comment like that to. I just shrug off comments like that. They come from people who are clearly clueless. Some have implied that I got my daughter diagnosed so I could put her on meds. I have no idea where they came up with that! Other than melatonin, my daughter doesn't take any meds. She was diagnosed because she has autism, and the diagnosis provides the services she needs to get help. Because of these services, my daughter is a very different girl than she was 2 years ago. Thank g-d!
ReplyDeleteYep. And you don't have to explain it or justify it to anyone who thinks they can diagnose your son by reading limited information about him on a blog. You're his mom. You're the one taking him to specialists, having him evaluated, getting diagnoses and forming plans for moving forward. You know him, and you're kicking ass doing what's best for him. That's all anyone needs to know.
ReplyDeleteFrom an Aspie Mommy (Diagnosed as an adult) who is the mom of an awesome also high functioning Aspie daughter...THANK YOU.
ReplyDeleteThank. You. So. Much.
I could go into detail about the comments I get when trying to explain Chibi's "aspiness" but they're pretty much summed up in the comments you posted. Adults who have worked with Chibi since she was a young, chibi shaped thing (she's 11 now) SEE the progress she's made and make a point to comment on it to me, and when it's appropriate, to her. We do things a little differently, but as you say it's a spectrum disorder and no two aspies are alike. No, she isn't having a tantrum because she's crying when a (new)swim team mate told her that THEIR team is now wearing BLACK swim caps (provided by the team) instead of the red ones that her old swim coach (who she knows right now is in treatment for brain cancer and misses him) because she's somehow "spoiled"; she's freaked out and triggered and her swim meet routine has been upset in a significant way and she is understandably upset and needs a chance to regroup and sort herself out. (Which she did with a little help from Mom because Mom knows from whence she comes) I know an aspie freakout from a tantrum thanks.
I'll shut up now, but thank you. Really alot.
Jesus - there is one in every pack, isn't there.
ReplyDeleteI hear ya sista!
Any ideas on why 40 -50 years ago there was no Aspergers?
ReplyDeleteI believe there was. It wasn't diagnosed, and those "weird" kids had terrible trouble socially and often ended up depressed and unable to cope.
DeleteI'm am soooo sharing this post on my Facebook page.
ReplyDeleteMy son has PDD NOS and I'm constantly being told that he doesn't "look special". I want to slap the ignorant right out of those people.
One person that just baffles me is my sons father. He tells people that I "made" his son "mentally retarded" by giving him "Autism" when he was younger. Yeah, cause it's something you can catch! Haha...
Thanks for this post!
I love your t-shirt idea! I can't tell you how many times people have looked at me with the "why-can't-you-control-your-kid?" look. They just don't get it. My mild to moderately autistic son is 17 and amazing now, but life wasn't always like that (and we still have lots of days...). As the 5th of 12 kids, he had many days when I just wanted to crawl in a hole.
ReplyDeleteSandy
www.twelvemakesadozen.blogspot.com
How much do I (heart) this? Sigh. There will always be ignorance. I always love the people who think they are trying to be kind and uplifting when they tell you "well, he doesn't look autistic to me" and you know that's where they are coming from, but you STILL want to throat punch them seriously.
ReplyDeleteI always want to say: "Well, you take just him for two or three hours and then come back and tell me what you think, hmmm?
Fortunately/unfortunately I am getting less of this these days because at almost 9, my son is looking more, rather than less autistic (little kids being able to get away with more odd behaviors and less sophisticated language then big kids).
I really am thinking of getting him a t-shirt... maybe one of those "Please be nice to my mom, I have autism" ones?
Because I was getting way too much of "the look" in the women's room at Chuck E. Cheese's today. And I almost said out loud into the room where nobody said anything to me but I could feel the ice daggers coming out of people's brains "Because he's too autistic to send into the men's room by himself, OK?"
@Von. I don't necessarily think that there wasn't Autism 40-50 years ago. I think that it probably just wasn't diagnosed as such and was just grouped in with "mental illnesses".
ReplyDeleteThankfully we've learned a lot in 50 years.
Note: I am not saying that I think Autism/Aspergers is a mental illness.
@Von @Holly B. or it was just seen as social awkwardness. Like my brother, who has a son who was diagnosed with Aspergers a few years back. He's a lot like his dad in mannerisms and social skills (or lack there of), and my brother is a lot like my dad. My dad who hasn't been diagnosed with Aspergers, but probably has it, and has just learnt to cope in the world coz he had to. (and it's probably mild Aspergers)
ReplyDeleteI always just thought it was a family thing, like how we use the same patterns of speech, that their personalities were alike. *shrug* they are who they are, and I love them regardless. Why would you not? :O)
This was a big issue in our house this weekend. My brother in law who is 16 this year has a severe case of aspergers. The problem of lack of knowledge comes not from other parents or children, but from his own mother. She's simply a lazy parent and refuses to get him the extra help he needs. I wish someone would truly educate her. In general he's a good kid, but she encourages him to embrace his panic attacks and anger. Especially towards my 2 year old, myself and my pregnancy. He has gotten much better. He doesn't flap constantly (but it's pretty close) and he excels in school. But I feel like there are some parents out there (not you, you're awesome) but parents who refuse to believe anything is wrong and treat them that way. He's generally a good kid, but I feel like by not being educated about his condition fully they've done him a huge disservice.
ReplyDeleteI think it's really easy to give your opinion about something you don't have personal experience with. You would only see one small part of the story-- not the full picture. I personally don't have that much experience with children with Aspergers/Autism, but as a classroom teacher I have encountered two students who were identified and a few others that IMO have signs of it. For those that were identified, they had many days where they appeared completely normal-- just socially awkward. And we also had days where it was obvious that they had Aspergers. You can't tell sometimes from a few experiences that a child has or doesn't have it.
ReplyDeleteYou basically rock. You are an advocate for your son (and all your kids). You're real about the difficulties and extreme awesomeness of your children, diagnoses and all. And a lot of people don't "look" ignorant, but quite clearly are.
ReplyDeleteTo the comment on no Autism 50 years ago: There was no hyperprolactinemia or Huntington's disease either. It's not a matter of not existing, it's a matter of the medical community having the resources to assess and diagnose the conditions. Thankfully, what once was considered to be bad behavior is now recognized as a legitimate difference in brain chemistry. We still have a long way to go, though.
@Von: Asperger Syndrome was first identified 67 years ago by Hans Asperger. It didn't become an official diagnosis in the US until the early 1990s. So even though it was identified back in the 1940s, you couldn't be diagnosed with it. Years ago, most of these kids were diagnosed as retarded, emotionally disturbed, ADHD, or OCD.
ReplyDeleteDS is 13 and when I explain to people who need to know (teachers, instructors, etc.) that he is an Aspie many of them respond with "Are you sure?".
ReplyDeleteUm, no, for thirteen freaking years I have been GUESSING.
And I sort of cried a little when I read your statement about not "looking" disabled and wearing a T-shirt; someone once told me that kids who are autistic/Aspie should have to wear a "special Tag or bracelet" so people would know they weren't "just brats". I don't remember exactly what I said - we were in Target - but I know that person has a Harry Potter style scar down the front of their heads from the verbal lightning bolt I sent them.
Meanwhile, everyone shore up on the smugness that comes with knowing that even though our kids are different, they will be the ones to solve the world's problems. I TRULY TRULY believe that Aspies and Autistics have abilities that we can't even begin to imagine and once we are able to tap their awesome brain power, the world will indeed change for the better.
From what I read, the reason we didn't have it years ago is because people who were labeled "different" were mentally handicapped and sent to an institution where they would obviously not progress. Sometimes I don't wonder if my son has a gift of evolution...a society focused on facts and less on social mannerisms and lies. I know many don't think that...but we don't know what is yet to come!! Many people in my family justify my sons behavior to my being a stay at home(i just give in to him you know). ;) My son has pdd-nos and spd. No. It is not normal to flap all day, not speak, play the ipod for every minute of the day and make no eye contact. The true ignorance gets me everytime! I am new to this. My temper and mouth are sure to let people know how I feel when I get looks or comments. My theory..hey, if you are gonna say something to me, you better be prepared to hear me say something to you. :) thanks for your words of wisdom!!
ReplyDeleteSubstitute 'bipolar' for 'autistic' and I could have written this myself, word for word. I'm always so conflicted when my son is able to pass for neurotypical, I'm madly proud of him for that achievement and that's what we've gone through 7 years of therapies to accomplish, but I wish people had even the vaguest idea of how hard we've worked to get there. Bravo for writing this post, very well said!
ReplyDeleteI support you! You're a beautiful spirit. Little Dude is super lucky to have you as a mom.
ReplyDeleteFor the people who do not undertand, its difficult to see the big picture when you have a small screen. Awareness is only effective if people will open their minds and hearts to listen. As with everything in the world, there will always be one or two that don't care to listen. They have to live in their ignorance.
Hugs to you and your family lady!
omg I wasn't going to post this link here (I did on your FB page) but now I have to! It's a mini-doc done by a HS student who has a teen aspie sister-I think it's a GREAT intro for parents and friends, especially moms who don't have a child with autism. http://www.youtube.com/watch?v=67rUtJBjWCA&feature=feedlik It's less than 10 min long....please watch and share. THIS is how we raise awareness (which I personally refer to "understanding"), by talking and explaining things.
ReplyDeleteSuch a good post. Just so good.
ReplyDeleteYou nailed it.
My favorite part is the "Bite me." You have such class... I would have put that at the top. Maybe in the title.
ReplyDelete:)
Again, I love your words! My young relative might "look" normal... and he is... but he's also not. Those social issues are a huge issue, that to the untrained eye, can come off as "bad behavior". Thank you for being so open!
ReplyDeleteYou're such a good parent. Would you adopt me? :)
ReplyDeleteWhat you do for your children is amazing. They couldn't have had a better mother.
I have never met anyone with Autism or Aperger, but I have had OCD my whole life. I used to get the "But you *look* normal" comment from teachers. I had problems in the classroom, with the lights, sounds and people going by my desk and accidentally touching me. I needed (and still do) much more time to finish any task because my obsessions are pure hell. At the school I'm now, my teachers have been really understanding and they're making things easier for me.
I wish everyone was as understanding and caring as you. Keep up the good work and remember we are all very proud of you :)
I said it last night. I shall say it again. That commenter is a dick. I would like to punch them in either the the boob or scrotum, possibly both.
ReplyDeleteYour posts on this subject are so awesome and so valuable and you are helping me (someone who is sort of clueless about this subject) become someone who GETS IT. I want to get it. I want to support my friends.
I want to be someone who when she sees a little kid at Chick Fil A go from hand flapping to freaking the freak out can look at that kid's mom and say: "Let me go get you another sweet tea" while I shoot laser-death glares at any other parents who sniff disapprovingly.
Thanks for creating an army of minions, who are living on the spectrum OR NOT (in my case), who are trying to get it. Who are trying to understand and accept and love the snot out of all kids of all kinds.
You are a rock star. That is all.
Love, Lydia (& also Kate except she doesn't know I'm writing this but she totally also agrees)
SRMM and others who have children with autism,
ReplyDeleteWhile I don't doubt YOUR child's diagnosis, I DO understand where Bittersweet is coming from on this. The extremely high rate of diagnosis does raise eyebrows.
In our club playgroup of six children, one is "on the spectrum." In my daughter's kindergarten class of 13, two have been diagnosed as autistic. In her Sunday School class of five children, one is autistic, and we know two others within our church. So that's SIX autistic children (all of whom seem very high functioning) in our little world?
Within my own family, I have a niece who has been diagnosed with ADHD and a sensory processing disorder, but falls short of whatever is needed for an official autism diagnosis. She has seen many specialists who disagree with each other, and my sister and brother-in-law are constantly getting conflicting advice from experts and others. It's very frustrating for them.
I belong to two mom clubs and frequently, I hear parents fret that there must be something medically wrong with their child because they have behavior issues. For those of us whose children are neurotypical, it's hard to always see the difference between "quirky child with frustrated parents" and "on the spectrum"--especially since we live in a world in which the diagnosis for autism seems to have sky-rocketed.
When I was growing up, I knew only one autistic child, and he was best described as "off in his own little world" because he just did not interact with others. My daughter is five and she knows SIX autistic children. Doesn't that seem like a lot?
My very long-winded point (and I do have one) is that while autism is a very real, very serious medical condition, it is hard to believe that every child whose parent seeks/claims this diagnosis has it. I don't think that SRMM has ever implied this to be the case, but looking at society as a whole, I do sometimes wonder what is going on here.
I love this post. I don't have a child on the spectrum, but I still love it. My daughter is special needs, but looks normal (at least with her shirt on--she has lots of scars from surgeries). While I can't pretend to know how it is to raise a child on the spectrum, I get frustrated frequently when people minimize the struggles we face each day because they simply don't understand. I frequently want to say "bite me", even to medical professionals. Thanks for opening eyes.
ReplyDeleteI always say after a screaming episode in a supermarket that I am getting my son a t shirt that says I am not spoiled rotten, I have autism. Because the looks I get are so unreal, like I could stop him from doing that and I can not. *sigh*
ReplyDelete@ Von Many people think that Einstein, Mozart and Thomas Jefferson probably had Asperger's. There's a great book title "Diagnosing Jefferson" That makes a good case for that. Now that my child has been diagnosed (finally at the age of 12, she's now 15) I can look back on kids I went to school with and "eccentric" teachers and professors I had over the years and say that several of them have Asperger's and because of the era they grew up in, they will probably never be "diagnosed" They do find their way in the world as adults, they probably just had a really difficult time getting there. Think back to the kids that were made fun of and bullied in your grade school. What characteristics made them a target? Thank goodness it's finally being understood. I'm glad it has a name. (p.s. I'm posting as anonymous, because it won't take anything else I'm trying to type in, but my name is Wendy)
ReplyDelete@Von who said...
ReplyDelete'Any ideas on why 40 -50 years ago there was no Aspergers?'
There was- Autism was just misdiagnosed as shizophrenia and the children were usually sent away or they were labeled as 'naughty' or 'weirdo'. I fully believe (as does my Mother) that my almost 60 year old Dad has High Functioning Asperger's... They just didn't know how to diagnose a child who would spin for hours and rock back and forth while focusing on a spinning object and making noises...
<> HAHAHA...You have NO idea how many times I have felt the same way. And I LOVE the tee shirt idea (for those times when we just want to crawl in a hole and die).
ReplyDeleteI also have gotten the looks and actually had people tell me if he was just disciplined he wouldn't act that way....REALLY....how about you take him for the weekend and see how that works for ya!!!
I love your blog and it helps me to know there are others out there going through the same thing we are. Ignore the stupid comments..they can't help it as they are just stupid and obvious they don't walk in our shoes.
As a Jeffersonian scholar and someone who has read Diagnosing Jefferson, I think it is a bit of a reach. Einstein? Mozart? Maybe.
ReplyDeleteI know I wish my 9 year old Autistic runner friend had some sort of physical marker so people would stop him for me instead of stepping out of the way and letting the 5-month-pregnant me chase him down the hallway. He looks completely normal until he starts screaming and banging his head or flapping his hands and the person talking to him realizes he can't answer their questions without parroting my answer (echolalia). Love that little goof though :)
ReplyDeletePS My friend's Mom bought him a shirt that reads "Freeze- I have Autism and I'm not afraid to use it" :) LOVE it!
ReplyDeleteWhy do the ignorant always find their voice when it comes to children? Why? If you don't know, shut the freak up. I am so tired of hearing, 'oh it's normal- just give him more time' etc...shut the freak up you freaking freakbag. 'Anonymous' here means 'too afraid of my own ignorance so I'm not gonna tell you who I am'. Dirt. Bag. A-Hole.
ReplyDeleteI think everything you write is done just beautifully, and this is no exception, just the icing on the cake:
ReplyDelete"To the anonymous commenter, and to those out there who see autism as the diagnosis du jour, I say this: while I hope that autism never touches you personally, I ask for your open-mindedness about what's happening in my family.
Failing that, you can bite me."
You could probably make enough to help pay medical bills if you made a t'shirt, as I'm sure many who read this blog would purchase.
I read your blog daily, and I think you're all kinds of amazing! Just think, every genius has haters, but they also have a fan club that would kick the haters' butts!
You keep on, keepin' on! :)
I just want to say emphatically, "I KNOW!"
ReplyDelete* News of the diagnosis has brought on a chorus of crickets chirping around me, and mostly from those who live far away and/or never spend time with us, because they are of the mindset that kids grow out of stuff, high functioning autism is make believe, doctors don't know what they are doing, etc. Even though we got our diagnosis from a team of 5 developmental pediatric specialists who, after 3 hours of observation, all reached the same conclusion.
* And I encourage you and others to write more about the experiences and traits of their autistic child that are not quite so "delightful." We all need to hear it: those who could benefit from awareness as well as the others of us who are plenty aware from personal day-to-day experience, but who might like to know we aren't the only ones going through hell with our kid.
* I love the tshirt idea. My kid doesn't look disabled either. I just look like a terrible parent.
Amen! Seriously, we deal with this too. My son's high functioning autistic, and like you, sometimes I wish we had some neon sign flashing above his head telling the world to give us a break.
ReplyDeleteI even have family that don't believe he's autistic... and then I just want to reply with, "Really? And where did you get your degree in Pediatrics? How about you take a look at the reports from our 5 different, unassociated specialists that have all come to the conclusion that he's autistic?"
People don't get it.
It's somewhat ironic to me...i thought my 4 years old was just normal with some strange idiosyncrasies. Then he got thrown out of preschool for lots of problems with other kids (and their parents i might add) and voila...ASPERGER'S.
ReplyDeleteI didn't want to have a problem...and now, you're being criticized for RECOGNIZING a problem like it wouldn't have been easier the other way around.
People are ignorant...that is all!
Even though I wonder if my comment will even be read since it's at the end of a long list (that will likely get longer), I feel it needs to be said.
ReplyDeleteAs I've "matured" in my parenting, I realize that it's best not to judge other parents/famlies because we DON'T know the whole story. If I see a child misbehaving in public, I politely steer clear of the situation and maybe give that parent a sympathetic smile. I try not to judge or get annoyed or mutter behind their back as I walk by.
Same with parenting practices. I have strong opinions about birthing, pacifiers, co-sleeping, etc. But I don't know the whole story on every child and every family situation, so I just need to chill out and keep my strong opinions for my family only.
I totally understand though about "looking" disabled. While Sadie doesn't look different now, I know that as she gets older, the CP will become more apparent. Sometimes I think this will be a blessing because then I won't have to explain to people why she can't sit by herself or why she's not grabbing the toy you're dangling in front of her. But in reality the whole thing is a curse, mostly for her.
Keep on raising awareness, you're doing a great job. Hopefully through our efforts, more people will realize to just mind their own damn bizness.
Love, Beck Baby-Mama
I love your blog and you are doing awesome. I have to admit, though, as a reader that has NEVER spent any significant amount of time with a child with autism it is a confusing and hard thing to understand. While I'd never suggest that parents are over-diagnosing their children (I live by the, unless you've had to live through it, you can never know what it is like) and while I also take great pains to not judge people, I do understand where that reader is coming from. That said--ignorance is no excuse for judgment. You are doing great, and you ARE actually enlightening many of us non-autism experts. :) Keep it up, girlfriend.
ReplyDeleteI can relate on a different level - my hard-of-hearing Girl Child. "Does she sign?"
ReplyDeleteShe's not deaf.
"She's not paying attention"
She can't hear you, especially when you're standing behind her in a noisy room.
"Why does she talk SO LOUD?"
Because she doesn't hear herself very well and doesn't realize that she's talking loud.
Imagine what would happen if we all, collectively, stopped making assumptions about other people's kids?
So, Anonymous - I'm writing to suggest that the next time you see a child in the store having a total meltdown, maybe ask the mom if she needs a hand. Give her a sympathetic smile. Think to yourself, "Maybe there's a lot more going on there than I can see and hear." and cut the mom a little slack.
You know... don't let someones ignorance make you feel like you need to write less about how awesome Little Dude is. Autistic or not, he's awesome. Why? Because as a parent, YOURE awesome.
ReplyDeleteIf you weren't proactive, compassionate and an advocate he wouldn't be in the position to be so awesome. You have done wonders for all of your children and, unfortunately there are still many ignorant idiots out there who don't take the time to realize Autism (or any other developmental/behavioral diagnosis etc...)is not a fashion trend.
You keep going. And, know that what you do even by writing your blog spreads awareness to many who may have never had any if they hadn't stumbled across your pages.
Bravo! Sure just like cancer is over diagnosed. That is frightening that Autism is on the rise at an alarming rate. The fact that it affects everychild differently also doesn't help the situation. Parents of children with disabilities have very thick sin, we are lucky in the respect that our circle of supporters have our back no matter what. They are fierce! We do what we do for our kids. I think I'm going to have to do a post on the subject on my blog, I'll backlink to you:) Nice post.
ReplyDeleteI hear what you are saying. My children don't have Autism but two of my triplets have learning disabilities. Their issues are unique in their expression. My kids behave at school and "look normal". I have had many in the school's administration, friends and other parents tell me that there is nothing wrong with them despite the fact that they have been diagnosed by multiple licensed medical professionals.
ReplyDeleteLike you, my kids have lots of awesome ability. That should be celebrated. Some believe that those awesome moments negate the issues at hand.
It would be nice if people would just try to understand that we love our kids and want to do the best by them.
While my children don't have Autism, I have friends with kids that do. I've known adults with Asperger's. It's real.
My biggest problem with this is that anyone in this world should care what you call your child. Clearly, Little Dude is extraordinary and you guys are doing everything in your power to help him. People don't understand that diagnosis also means services - "Asperger's" will get you the much needed OT, PT and speech that "socially awkward" won't. If you called him "schizophrenic" to get him what he needed - who's business is that?
ReplyDeleteThe fact that Little Dude meets every criteria for Asperger's is irrelevant - he rocks and you guys are doing an amazing job with him!
THANK YOU. My son is adorable and makes fairly good eye-contact, which encourages people to rush up to him, *squeeze his cheeks*, and inundate him with questions he can't answer. (A big three year old, he looks five and doesn't speak.)
ReplyDeleteI did buy a shirt for him-
"This is my time-out shirt-- I wear it all day long!"
It is funny to ME because he really does need constant breaks, but hopefully sends a message to other parents that I am at least AWARE of the fact that he melts down every time we grocery shop....
You have done it again!! It's like you're in my brain! I love this post because I an identify with it completely. You did a wonderful job at addressing those posts.
ReplyDelete@Jeannie. Sure there are a lot of children receiving the diagnosis of Autism. However, I do not believe parents are requesting it or want it. I, for one, did not. Do you think that I wanted to hear that I was right about my suspicions? For once in my life I wanted to be wrong. I just wanted to understand him and help him. The search for that led to his diagnosis of Asperger's. In our case, Baby J (he's 6, I know I should quit calling him that) is not on meds but the diagnosis helps me figure out what I need to address for him. So if he, for example, starts twiddling his fingers repeatedly while rocking back and forth, struggling for words, I have a clue as to what to do for him.
@Jeannie: What you may not understand is that the diagnostic criteria for autism have changed over the last 20 years. For one thing, it became a "spectrum," which it wasn't when you were growing up and knew only one autistic child. Now more kids who previously would have been called other things (ADHD, emotionally disturbed, LD, etc.) are getting an autism diagnosis. This does not mean the kids you encounter are now misdiagnosed, but that the autism spectrum has broadened to include them.
ReplyDeleteHow many kids in your daughter's class are "mentally retarded"? None. Does that mean mental retardation has plummeted or been cured? Of course not. The labels change as the years go on. Better understanding kids and their problems/issues/frustrations/challenges is not a bad thing.
I get the feeling from your comment that you are someone who thinks parents *want* their kids to have autism. They *seek* the diagnosis. For what, fun? Because they're bad parents and can't handle their kids? Because they're uptight and think every little thing means something is wrong? Could be true in some cases, I suppose. But I'm still not sure how those kids having or not having an ASD diagnosis (i.e., how many ASD kids your daughter happens to know) should matter to you at all.
There are plenty of borderline cases like your niece. Why does that seem strange? It's like saying a child has trouble with math but doesn't quite have a diagnosable learning disability. The evaluations of kids are getting more and more specific, to better help them with school, social behavior, etc. If I had been diagnosed when I was a child (I now have an ADD diagnosis myself, and could qualify for an ASD diagnosis if I pursued it), perhaps I would have been helped with the things I needed help with. Perhaps I wouldn't have developed an anxiety disorder after years of pretending to be normal, pretending I understood what was going on in school (as I flunked and flunked and flunked), and constantly avoiding any kind of social interaction. When I was in school, they said I was "shy." But my issues were much, much deeper than that, and I needed a lot of help I never got. If the ASD diagnoses for kids who "seem very high functioning," are going up, it's because these kids need help, whether you can see it or not.
My sweet son is 8 and was diagnosed with aspergers at 6. It has taken us years and many fights with schools and teachers to EDUCATE the EDUCATORS. It is amazing how narrow minded and oblivious some people are to what is going on in this world. When I read about Little Dude it is like reading out my own son. Jory is brilliant and beautiful and smart. He has quirks that other people see as weird and sometimes has a hard time (ok all the time) making friends. It blows my mind that he has an IQ of 137 but he cant tie his own shoes. He is mainstreamed and this has made a huge difference in his daily life. I love your blog and I love that you use humor to deal with things most people wouldnt be able to handle. I will leave you with the same thing my husband tells me when someone makes a rude comment, stares at Jory while hes having a melt down or when someone tells me hes weird. God gave you that baby because he KNEW you would be his voice. He knew you would fight for him and make sure that he had what he needed when he needed it to help him become a functional part of society! Just remember YOU are the one who knows Little Dude best and never mind these people who leave comments telling you that youre wrong!
ReplyDeletesorry i don't have time right now to check if someone's suggested this above, but my 13 year old balanced his senses in a similar way to 'little dude' when he was younger. now it's just pacing, a bit of flapping and explosion noises. Have found that it's better to let him get on with it and i don't always want to explain to everyone who stares why. usually i just stare back and ask 'YES?'
ReplyDeletesorry almost forgot. suggestion! we found that wearing a baseball style hat (must be green or black!) cuts down on a lot of sky in wide open spaces and in crowds, sunglasses are good (black men-in-black style or pink/blue tinted round ones)
Nikki
SRMM- please keep your head held high, your cowgirl boots on and PLEASE keep doing what you're doing. I can tell you that your blog and your posts help a lot of families remember that they aren't the only ones dealing with the issues that come with Anxiety, ADHD, Autism/Aspergers. You have put more perspective out there for each of these very real conditions. You make them funny, you make them OK, you share when they are sad, when they hurt your heart and when they're just too much. Don't ever let someone who is uneducated bring you down.
ReplyDeleteI myself deal with anxiety which manifests in driving. I cannot drive. I am 22 and on my second baby, and I cannot drive. I hear all the time "you just have to DO it. you have to TRY." I have DONE it. I have TRIED. It is impossible to get people to understand that it isn't just a silly fear, or for attention. I hate myself on a regular basis and often feel useless and dependent. Yet I get behind the wheel to TRY and I stop breathing, I know that my reactions to sudden situations when I'm a passenger (fake brake!) are not the right reaction if I were driving. So I cannot imagine trying to explain to a stranger why my child is acting the way they do. You are doing great.
"I don't want to write it. You don't want to read it. Many of you are living it."
ReplyDeleteYou just summarized the biggest reasons I don't talk to my few friends and acquaintances about our day to day life. This is the reason I answer, "Fine," to questions about how we're doing, how the kids are doing. This is why I can't bring myself to attend any support groups or parent groups. I think about it, live it and sorry myself sick over it all the time. I don't WANT to put it all into words again and again because I'm tired, my kids are tired, the whole family is tired, and we have to find time to focus on something else every single chance we get.
Thank you for the laughs, the camaraderie, the inspiration and, above all else, when absolutely needed, the escape for a few minutes. Until it's time to get back to reality -- the fight to educate others and advocate for our precious kids. Thank you in so many ways for saying what I haven't been able to find the words to say.
Preach it, sister.
ReplyDeleteYours truly,
A fellow autism mama
Hear Hear!
ReplyDeleteMichelleBee and LAB--No, I don't think parents WANT their child to have autism, but I do think they want an EXPLANATION as to why their child is "different." And as LAB suggested, no one seeks a diagnosis for fun--I know that. I think they seek one out of frustration and concern for their child's well-being.
ReplyDeleteAnd yeah, I do understand the concept of a spectrum. Thank you.
Dear author of said posts: Is your name Tom? Tom Cruise, is that you? I mean, I'm just wondering since you're known to spout out completely idiot medical opinions when you are completely devoid of any medical education. Look at that, SRMM- you have a celebrity follower. You've hit the big time!
ReplyDeletep.s. Take your shoes off before you jump on other people's furniture, umm kay?
Thank you so much for this post. I don't know how many time I have to explain that I am not a bad mother and my son is not just dealing with life. Nor is he misbehaving. I have even had to explain this to family. I am going to share this on my fb page, hoping others will be informed.
ReplyDeleteThanks again
Well said. I guess I have the opposite problem. My son has Down syndrome & while I adore his almond-shaped eyes, I also know that they immediately signal to others that he is somehow "different". Many take one look at him & assume that he's lacking intelligence or is a person in need of pity, neither of which is true. Once, while grocery shopping, I actually had an elderly woman walk up & pat my son on the head & say, "Oh bless his poor little heart". I wanted to say, "Chill out Grandma. He's gonna be just fine", instead I just bought my pita chips & left. Of course, I later devoured that entire bag of chips in tears. One of these days I'll get it together........
ReplyDeleteI'm sure in the wonderful world of blogging comments like that are more than not...really sucks that you can't fix stupid.
ReplyDeleteReading the comments on your blogs are great...I've picked up quite a few tips from other moms.
Thanks for making time to put your story out there for us to read...time..precious time!
I love this post. My son isn't anywhere near high-functioning- he generally scores moderate to severely effected and we STILL get comments from people- maybe because we were at the playground and he was playing on the equipment fine and didn't throw a tantrum- so therefore he must not be autistic...it drives me nuts!
ReplyDeleteI like that you focus on the awesomeness of your son- but people need to realize they can't diagnose your son from your blog posts lol- and without a doctorate of some sort either ;)
Von back there wanted to know why it was diagnosed 50-60 years ago. I imagine that long ago, low functioning children/adults would have been labeled as disabled and gone to special schools or supported workshops. They may have been the "naughty" kids at school who slipped under the radar and dropped out of school unable to read and write.
ReplyDeleteAlso - when my son doesn't look you in the face when you're talking to him, he doesn't do faces, especially strangers. He's not rude. And if he paces up and down when he does want to talk to you, he's does not have ants in his pants, it's just taking everything he has to hold it together to talk to you in the first place.
SRMM, when are you going to tour ?
In reference to the comment: Anyone who disputes the diagnosed condition of a child with the child's mother is severely insensitive & ignorant.
ReplyDeleteThank you! I too tend to gloss over the reality of our life, because to really dwell on it is just too much...and we are among the lucky ones!! My ds has a dx of pdd-nos and is high-functioning, but it still affects every facet of our day. Yes, he looks perfectly normal, and can on occasion pass for NT...but give him a few minutes, and he will be back to his normal flappy, jumpy, spinny, self...or may just completely meltdown into a screaming mess. I am not a bad parent and he is not a brat, he has an asd.
ReplyDeleteAnd what really bugs me even more than the stares and comments of strangers are the things said by family and friends...the ones who say "oh he's fine" , "he'll grow out if it" or "oh my child does that too". If it weren't for the fact that it would traumatize my son to be in the care of people so ignorant of his needs I would send him off with them for a few hours, so they can experience what it really means to have a child on the spectrum. If what's going on with your child does not affect most every part of your life, then I'm pretty sure that you can rule out an asd.
Substitute ADD/anxiety (my son's diagnosis) & I could have also written this. Our youngest daughter also shows ADD tendencies, but we were relieved that we do not have to put her on meds. She does have some special concessions made by her teachers though. If these people had any idea what the side effects of some of those meds do to kids, they would never say anything resembling "you just had him diagnosed to put him on meds". Concerta made our son not gain weight, we were giving him Ensure so he would lose more weight. Finally we talked to his doctor about our concerns & he was switched to a non-amphetamine drug. (Which also has it's side effects, but they are not as bad for him as the Concerta was.) There are a team of professionals who need to agree on the diagnosis before anything can be done.
ReplyDeleteI really like how compassionate you were with your response! After I saw Anonymous' first post I had to think to myself "I wonder why Anonymous was reading SRMM . . . hmmm . . . " Maybe there is some denial or something close to such going on? Maybe there is a sneaky realization that hasn't yet been completely wrought out? Whatever his/her reason, I'm sure there is a story there. Maybe this person needs some support to get to the otherside of a very difficult process.
ReplyDeleteAnyway, I hope the same as you do. I hope that those who have not been personally touched by autism can be open-minded and compassionate enough to admit they just don't know (and therefore,may not know how to be supportive.)
My little boy also looks "normal" until he's in full-blown rocking/humming/cowering-under-the-table Asperger mode... Just a kid "causing trouble." It's hard when we feel we have to educate the public, the school system, our families and even sometimes our doctors!
Bless you for this blog and what it provides for all of us!!
One short comment that may stir the pot. I know it is hard to believe, but there are attention seeking parents that actually WANT something to be "wrong" with their children for the attention they receive from it. I know of a woman who was dead set on her youngest son being autistic and took him to THREE different doctors to try to get a diagnosis. All 3 said he didn't have it, nor was he on the spectrum. I work with this child in the preschool he attends, and he is a fun loving, caring, social, "normal" kid. He doesn't script, or rock back and forth make "weird" noises etc. It is hard for parents who are actually living the diagnosis to believe that anyone would WANT or ASK for such a diagnosis, but it does happen. There are parents out there that aren't as awesome as SRMM or any of you that are raising and living with kids on the spectrum. I applaud my sisters (yes BOTH sisters) who are raising and loving their kids who are living with autism. My niece is mostly non verbal and almost 5 and not potty trained and my nephew is 7 and memorizes every movie, tv show, commercial, comic book etc that he can get his hands on and then recites it to anyone who will listen. I love my niece and nephew and they bring light in to my life and a little understanding of people who are "different".
ReplyDelete@Marla Sue...unfortunately, I think you are right, and by doing so those parents really muddy the waters when it comes to people understanding what autism is, and make people question the diagnosis of other kids who actually are on the spectrum.
ReplyDeleteI've just stumbled on your blog (and will be stumbling back again soon) and although I don't have anything especially relevant or germane to add to the specific conversation at hand, I just wanted to say you are awesome. Your Little Dude sounds awesome too. Keep shouting to the rooftops how awesome he is! Why should having autism (in my son's case) or Asperger's in yours, make them any less wonderful, or give us any less reason to proclaim it. Maybe this needs to be a on a tee-shirt too: Awesomeness and Autism aren't mutually exclusive. (Duh!)
ReplyDeleteOh, and I would buy this one in a second: "PS My friend's Mom bought him a shirt that reads "Freeze- I have Autism and I'm not afraid to use it" :) LOVE it!"
@Kathy--You listed the exact top three "helpful" comments I get ALL the time, from friends, family and strangers: "I think she's fine," "Give her time to grow out of it," and "My kid does that too" If I had a nickel...
ReplyDeleteNeither of my children are on the autistic spectrum, however as an elementary school teacher, I can 100% agree that yes, autism spectrum disorder is a very real thing. As you mentioned, it can look very different in different children, but that doesn't mean it's not a valid condition. You're the mom and you know your son best. And obviously, you have multiple medical professionals backing you up here. People can be so insensitive at times. Try to keep your head held high and continue to advocate for all of your children, especially Little Dude and his awesome self!
ReplyDeleteMy heart really goes out to you. I don't really know much about autism (I just happened to come across your blog today.) and I don't have any kids with it but I do know that out of 6 of my kids none are alike. I have one child that I'm sure would have been diagnosed with ADHD if he had been in public school. He would sit at his desk and at the end of the day look like he had went through a war. Sometimes his legs would go back and forth, back and forth. Poor guy. I always felt so bad for him. I ended up tailoring his education to fit him and he is probably my most intellectual child with a multitude of interests.
ReplyDeleteAll of this was to say, I don't know exactly what you're going through but be encouraged by others who have been there and made it through. I love that letter from the Russian girl that you posted today, btw.
You know, there ARE T-shirts such as the one you describe. But maybe the idea of such a shirt is to put the shoe on the wrong foot, as it were, or the shirt on the wrong kid. Children with behavior problems but no diagnosis should have to wear shirts that say, "I'm not autistic and I don't have ADHD. I'm just a brat!"
ReplyDeleteDear SRMM, you are so polite. It seems to me to take a lot of gall for someone to diagnose your son without ever seeing or meeting him and with no professional credentials. That's simply outrageous.
ReplyDeleteAs to her actual point: the rising incidence of autism diagnoses, it is a concern of society to both understand why this is happening and how to get treatment as early as possible to those who need it. Reading your blog has given me so much more information about the treatments available and the potential for kids on the spectrum to conquer their "quirks" and rein in their hypersensitivities.
That being said, it is hard, as an outsider, to watch a child in full meltdown mode in public and not judge. We're human. Since I've been reading this and other autism blogs, I've become so much more aware of the other possibilities when a child appears to be having a tantrum. It's part of the education and awareness process this month is all about. We need to recognize that these behaviours have multiple causes, not just being spoiled or bratty.
Thanks for all you do.
~physicsmom
I'm not going to lie. I use to be like those two commenters. And what changed my mind completely is reading your blog, period. I have learned so much more about the disease and started recognizing the symptoms in myself and my children. Albeit at the lower end of the spectrum. So thank you very much for opening my eyes.
ReplyDeleteI can relate all too well. I presented my son's school (a magnet school that is the best in the city) with lots of printed information to help them understand asperger's syndrome. Yet, they still make comments like the ones you mentioned. It drives me insane.
ReplyDeleteOut of desperation, I made a sign with a list of things that medical professionals needed to know about aspergers and how medical personnel should interact with my son. At every medical appointment he hands to sign to the doctor/nurse/technician and says, "Please read this before we go any further." So far this approach has done wonders. Now if only I could think of a way to do the same for the general public.
Amen, sister! I'm going to be doing a presentation on autism to a group of kids later this week and I will most definitely be talking about how autism is sometimes invisible. Kids need to understand and be tolerant of differences in the way our brains work. I've seen adults get angry with parents "coddling their spoiled brat" child with autism and other kids get upset that a kid with autism "always gets away with stuff." There is much to learn for everyone who isn't already in the trenches. Thank you for the excellent post.
ReplyDeleteAlthough my son has never been diagnosed, he had some amazingly prolonged temper tantrums up to about the age of 7. One of them happened in a hotel room as we were packing up to leave and lasted so long that someone in the room next door called and asked if everything was ok and when I said yes, she said "well, maybe you should try something different because what you're doing isn't working." My response, "I have been trying something different for six years and it's not working either." People can be idiots.
ReplyDeleteKeep up the good work. You have a lot to teach everyone, that is for sure.
ReplyDeleteSing it to me sister! I could have written your post...but not as well and not as witty. Yes, they can "bite me." I think your little dude and my little dude have a lot in common and not just their age. Thank you for helping me to laugh about some of the bullsht we deal with...
ReplyDeleteA Grateful mom
I hate that, even my closet friends have trouble understanding. These people don't live with our children, they don't experience and see what we see. Right now is a real struggle for us. My son is currently in a residential treatment facility. I hate having him gone, it feels so un-natural but at the same time it's a relief. I can breath and not have to worry about the next melt down. We can run errands and go out as a family. I can spend quality time with my other two children and my husband. I feel guilty for even posting this but it is my families reality. I really hope this facility is able to help our son. It was a last resort, we have tried everything but he just cannot function in the "real-world." We are also struggling with his school district. It would take me an hour to type about all the problems there. I just need the strength to keep going. All I want is for my son to have a happy, healthy and well adjusted life. Is that too much to ask for? Apparently it is.
ReplyDeleteI have just discovered your site and am very grateful to have found it. My Aspie is 10 now (diagnosed at 6) everything you said is true. He looks normal most of the time. People are not always understanding when a ten yr old suddenly crouching down on the ground into a ball in the middle of an aisle of a store. He has gotten much better. He has worked very hard to handl such situations. He tries to tell me, warn me when he feels he can't handle anymore. "Mom we need to go now" But sometimes there's no warning and there's a meltdown... people don't understand...
ReplyDeleteI read about the parents of children who have melted down in public, and gotten "the look" and have flashbacks from taking my Aspie to the Western Washington State Fair (Ok, the Puyallup fair, same thing). We had forewarned ALL of the kids that there would be NO RIDES that day. Well, at the end of the day, my mom wanted to see a particular booth/exhibit/thing that was on the OTHER SIDE of the carnival. Shortest route (with THREE exhausted kids) was to cut through the rides. Stupid me. Granted, this was before our diagnosis, but still... my then 8 year old (I think he was 8, might have been 9/10) went into full-blown-screaming-his-head-off-exorcist-child-meltdown. We got the WORST looks. Like we were the WORST.PARENTS.EVER. I felt like crud, because I couldn't control my child. I now know it was an Aspie meltdown, but at the time I was clueless. I am VERY proud that I didn't resort to spanking nor did I allow ANYONE with me to resort to it (there were many threats from the others with me of violence, but I stood my ground!)
ReplyDeleteTo this day, I still have nightmares of that night. I am so glad that I know of his Aspie-ness now, and I know how to deal with him. But it still makes me feel awful for other parents of ASD kids who are melting down in public and get the glares. If you don't know the whole story with the child, simply walk.the.eff.away. Do NOT glare at the parent, do not threaten to call CPS because OBVIOUSLY the parent is abusing/spoiling their child. It is wrong.
Ok, I think I've written a small novel again. I'll quit for now.
Thank you for writing that. My lil chicken has Dyspraxia, which most people have never heard of and certainly can not identify (Daniel Radcliffe has it! You know, Harry Potter). He has a bunch of "quirks" and we investigated autism as a diagnosis around age 2. He was found to not have it, but he does have some similar behaviors. Regardless, some people are jackasses and say like you said "he doesn't *look* disabled"! His own father calls me up once every year or so and says "Tell me again, is he autistic? Cuz my wife wants to know..." Ummm, ok, no he is not. "Then how come he talks funny? And how come he flaps his arms weird? And how come he can't write well?" SIGH!! Some people just suck. For all the parents out there who are trying their best to raise their special "quirky" kids despite the stupid people: screw the stupid people! Just keep on truckin :)
ReplyDeleteI have personally not dealt with Autism, but I fully believe that its not MY place to judge whether a child has issues or not. Nor call you out on 'He's just fine, blah blah blah' because, hey, I haven't been there? People are too quick to jump on the 'you're such an awful parent' bandwagon. And God forbid a child has 'I have a disability' stamped on their forehead because, news flash society, they're just people. Its like, 'he didn't look like a serial killer' doesn't mean he wasn't a serial killer. I rarely post comment but my best friends little girl has Trisomy 18, spina bifida, and just got her full-blown leg casts on today. Oh and she's only 4 months old. I get so defensive over people who criticize parents and children with disabilities! Gah! People need to learn to MIND THEIR OWN BUSINESS.
ReplyDelete@Von:
ReplyDeleteI have a very simple answer to your question:
Because the term "Aspergers Syndrome" was only invented in 1981, which was 30 years ago. So there was no Aspergers Syndrome as a diagnosis 40-50 years ago.
Although I missed this post when it was "fresh out of the oven", I did find it delightfully relevant to me today. As the husband of an Aspie wife and Dad to three kids with ASD, I cannot begin to describe the craziness of it all. But damn, you gave it a pretty good shot. Can I tell you how insane the world makes me feel? All of my in-laws are Autistic (and coping as alcoholics) but my "normal" NT side of the family are often the worst. For example, my Mom, an RN, apparently refuses to accept the diagnosis of at least a half dozen highly trained medical professionals and comes to me every month with a new CURE or CAUSE for my wife and kids and their "Autism problem". Lack of fresh fruits and vegetables, a high childhood fever, no proper discipline, it's really the vitamins you know, allergies and the list is simply mind numbingly endless. The ignorance of the general public is actually easier to deal with. Unless you are at a restaurant with people hatefully staring at you because your kids are chatting away loudly, making weird noises and having emotional meltdowns because the ice is too damn cold. And I'm sitting there mentally drinking whiskey and planning my escape to some far away island to live out the rest of my days as a guy named "Bill".
ReplyDeleteI agree 100 %
ReplyDeleteYou couldn't have said it any better! I have a 15 year old teenager with Autism. He is amazing. When he was young, I totally felt the way you have just written.
Thank you.
One of the reasons I started reading your blog (after finding it due to Rants from Mommyland) was that my daughter's school councilor decided she has Asperger's (J-bean was in year 8 at the time). While I knew full well that J-bean had social difficulties and some quirks, I also knew enough from my early childhood education studies to know that she didn't have Asperger's. I especially knew that if she were on the autism spectrum, someone in the 7 years of primary school and 1.5 years of high school to that point would have noticed the possibility before then. Her primary school is so well known for their programs for students with disabilities that when I tell other parents my daughter went there, they ask if she is disabled. I also knew that any diagnosis coming from a woman who could not conceive of a girl not caring about clothes had to be complete rubbish.
ReplyDeleteJ-bean does have social issues, so do I. Additionally, she does not have much in common with her peers because I'm way more feminist than the parents of most other girls at any school she has been at. She's an anxious and depressive person too, but so far the doctors have felt that medication would be detrimental. She may have a smidge of ADHD or ADD (her father claims to have ADHD. She's also a child of divorce who has, despite my best efforts, ended up being my carer for my own mental health issues at times.
None of that mattered to the school councilor. J-bean wasn't responding to her style of help, so there must be something wrong with her. How do we label problem kids these days, that's it, Asperger's. It was very much a diagnosis du jour.
One of the things that interested me about your blog was the traits that an actual child with high functioning Asperger's showed. I have studied early childhood education and worked in the field. I have not had much contact with children on the spectrum, but I can definitely say that I never met a four or five year old who displayed the traits Little Dude does. It is very clear to me that Little Dude has difficulties interacting with the world that make my quirks look like just that, quirks that are really no big deal.
My point is the person who left that comment obviously needs Autism Awareness week. You looked at your life through the lens of the potential diagnosis and saw lot that fit. I did the same and saw only a superficial resemblance.