Bio
Learn more about me or just visit my personal blog or come bargain hunt with me. Writing? Check. Parenting? Check. Shopping for shoes? Check. Yep,...
 
 
 
 

What’s Hot on BlogHer.com

The Keeper: A Tale of Late-Childhood Asperger's Diagnosis

  • Share This Post
  • submit
  • 31
  • Sparkle (
    )
     

For the first time in a very long time, it felt like things were okay. Good, even. Things were going to be great, in fact, and once I got the kids settled in to our new town, new house, new life ... things would only get better.

So there I was in the office of the one and only psychiatrist in town our new health insurance would pay for, who would also see children younger than twelve. My son was only seven, but for the past year, he'd done well on an anti-depressant to help control his anxiety. I'd had reservations about medicating him -- of course I did -- but it helped. It helped a lot, actually. All I needed from this doctor was a new prescription for the medication that we already knew was working fine.

I'd brought his medical records and his neuropsych evaluation results. In answer to the doctor's curt questions, I explained that he'd been a colicky baby but then a charming, social, active toddler. By the time he entered preschool he never cried; he loved school, adored his friends, and other than being a little clumsy, and maybe just a little more sensitive than the other kids, he appeared to be perfectly normal. It wasn't until kindergarten that the tantrums began. And it wasn't until first grade that a kind teacher asked us if we'd ever heard of Sensory Integration Disorder, and recommended we have him tested. Testing bore out her suspicions: He had a pretty classic case of SID, combining both hypersensitivity to touch (the slightest brush against him could result in wounded howling of "You hit me!") and large proprioceptive deficits (he struggled with balance and just generally knowing where his body was in space).

I explained all of this to the new psychiatrist. I detailed how we'd tackled the issue on all fronts; in addition to medication for the anxiety, my son had been receiving regularly occupational therapy and attending talk therapy, as well. He was doing better. Combining all of those things together, I told him, he was practically back to the old version of himself, the one who was all smiles. To punctuate my point, my son -- who'd been sitting next to me, fiddling with a couch cushion this entire time -- turned to the doctor and flashed him a wide grin.

The doctor took notes and nodded and asked a few more questions, and then asked to spend fifteen minutes talking to my son. I agreed, but when I didn't move, he added, "Alone." Embarrassed, I headed back to the waiting room, hearing my son launch into a detailed explanation of his favorite Pokemon character as the door closed behind me.

When fifteen minutes had passed, the doctor walked my son back out to the waiting room and asked him to wait for me, then invited me to come back in without him. Back inside his office, the door clicked shut as I settled back down on the couch. "Did you learn a lot about Pokemon?" I asked, trying not to laugh. It was my son's current obsession and I knew he'd given the doc an earful.

"Oh yes," he laughed. "More than I ever knew before! He's quite the charmer."

"Thanks," I said, smiling. "I think we'll keep him!" That had always drawn a chuckle whenever I'd said it before, but the doctor merely made a note on his pad, expressionless. Then he set his pen down, looking up to lock eyes with me.

"So," he said, then. "Your son has Asperger's Syndrome." He said it as though he wondered why I hadn't told him.

"What?" I said, sure I'd misheard. He was still looking at me, taking in my flustered response. "He ... no, he doesn't," I continued, briefly wondering when it had gotten so warm in his office. "He has Sensory Integration Disorder. He was just tested last year. That's all. Sensory stuff. He's not autistic."

"Why do you say that?" he asked me, cocking his head to the side. I stared back at him, baffled into silence. "I mean," he continued. "You seem ... almost offended."

"I ... uh ...," I groped for words. "I guess I am a little offended?" It came out as a question. I tried again. "You just spent less than an hour with him. His testing last year didn't say anything about that. He's extremely verbal.

  • 31
  • Sparkle (
    )
     

Comments

Post comment as twitter logo facebook logo
Sort: Newest | Oldest
AmyandJoanne 5 pts

Hi Mir, My sister and I have written a novel about a mother and her 15 year old adopted son who has Aspergers and searches for his birth parents. We thought you might be interested in reading it. We are posting it chapter-by-chapter on BlogHer or you can go to www.wickedgoodthebook.blogspot.com ( http://www.wickedgoodthebook.blogspot.com ) where the entire book has been posted. Or, we can e-mail the novel to you or your e-reader. We want everyone to read Wicked Good and hope you will check it out. Thanks, Joanne

Mir Kamin 6 pts

But at the very least, let me say, first, thank you for commenting, and second, please look into education advocacy in your state. You are right, it's illegal for a child to be kicked out a public school when there's an IEP in place to deal with the issues at hand. Depending on where you are, such assistance may be free (or low-cost), and I know that doesn't solve the issue of time, but perhaps it will help when it comes to dealing with school.

I hope that things get easier. Keep fighting the good fight. :)

--
Mir Kamin (BlogHer contributing editor)
Personal: Woulda Coulda Shoulda ( http://wouldashoulda.com/ )
Having it all with less: Want Not ( http://wantnot.net/ )

Masonsmommy1026 5 pts

My son is 7 and was diagnosed with this last year by his psychiatrist. His neuro-psych doesn't agree, because he maintains eye contact for the time frame "a normal 6-year old" should and goes into detail about the topics that interest him. I am having a hard time getting his IEP changed to include the multiple diagnoses besides Asperger's that the psychiatrist (who I still think is crazy as you have felt too) proclaimed to me in a 15 minute session with my son. I'm beginning to become aa believer of him and his crazy diagnoses though. Mason has been to 4 different public schools and and has been kicked out of all of them. I know that it is illegal for public schools to do this, but I am a single mother, my ex left me because he couldn't deal with our son misbehaving, the time I have to take off from work to pick him up early from school is already making my employer angry so I'm at my wits end. I came here looking for support channels... I glad I actually read your article. Thanks for some tough to swallow advice, I needed this.

KWest 5 pts

I can clearly hear your tones, your inflections as you articulate all of your thoughts and feelings in this article. Pretty amazing writer, chica.

ms.p_the.word.wall 5 pts

This is such an inspirational story! Thank you for sharing!

I have a cousin who was diagnosed with Asperger's when he was older (around 13). He had always shown signs of being a little lost socially speaking. However, we just found out about a year ago that he does not of Asperger's. They did some brain scans and saw that he actually has a tumor over his temporal lobe which has caused the supposed "Asperger's" and several behavioral problems. The tumor is inoperable but should not cause any actual health problems because it is benign. He is now in a kind of "halfway house" for adults with Traumatic Brain Injury. It has definitely been hard on his parents but he is doing SO MUCH better now that he has been properly diagnosed and can receive the right kind of help!

I'm glad I got to hear your story!

ms. p

read about her life as a (future) teacher at: http://the-word-wall.blogspot.com

aspieteach 5 pts

Mir, what a beautiful story. As an adult with Aspergers myself, I'm so glad to hear you're reaching out to adults on the spectrum and making connections there. It shows your son that you accept who he is and whoever he's going to grow into. Such a lucky little guy!

Sandy from Aspie Teacher ( http://aspieteacher.com )

TheBlackTortoise 5 pts

Perfect capture of the emotional waves that come over a mother of neuro-atypical child. (That's a new phrase for me.)

My daughter is 32 this year, and now is in a "marriage" with a neuro-atypical man. We have two "Keepers" keeping us company on a daily basis, as we move through our Golden Years!

Adela

Blogging at:

www.oncealittlegirl.wordpress.com ( http://www.oncealittlegirl.wordpress.com )

and

www.theblacktortoise.com ( http://www.theblacktortoise.com )

whymommy 5 pts

It's late here, and I don't know that I can put a good comment together, but ... wow.

I didn't even know about socially inclined Asperger's. Hmm.

Thanks for teaching me something, Mir. I'm glad you wrote this.

Susan

http://toddlerplanet.wordpress.com & http://motherswithcancer.com

CrazyAdventuresinParenting 5 pts

Thank you for sharing your child and your journey in such a wonderfully written, heart-pulling, kind-of way. I needed these tears today.

~ Lisa

Crazy Adventures in Parenting ( http://www.crazyadventuresinparenting.com/ )

Amanda_Magee 5 pts

But I didn't mean to read this and become so deeply invested in the outcome, in your pain, his journey. I am so moved by this post and your honesty. I have not walked this path, but I will carry its narration with me so that I will not be a pair of judging eyes to anyone. So, so glad that you wrote this, BLogHer gave it a space and that I found it.

Amanda

http://amandamagee.com

McVeinot 5 pts

Sorry, but I burst out laughing when I read the part of "they talk like brainy old college professors in spite of being fairly immature in other ways" because that is my son, in addition to just about every other symptom of asperger. I have always suspected him of having Aspergers but right now, we don't have a doctor. I don't know where to turn. I have a friend who is a doctor (surgeon) and it took him 3 years to finally get his son dx'd as having autism, even though it is clear as day. I've seen others get the run around so I wonder if I should bother.

DS is 8 and we homeschool so we have been able to have a different life than if he had of been in school. His friends accept his differentness. I make sure he knows it is ok to be himself, even if that means lots of extra cuddling him down during tantrums, listening to him drone on for hours about his fad of the moment (maps right now; he has our province almost memorized), or whatever his extra needs are. I also suspect DH of having aspergers but he won't get DX'd. I debate daily about if official dx's would help us.

laurie 5 pts

So well written and one of the best I have ever read on this subject. My older son has a dear friend who was diagnosed with Asperger's in Grade 4 or 5 - it helped all of us to understand him better (and for him to understand and accept himself). He is a lovely, funny, loving, smart and special kid - another keeper, for sure.

Laurie

www.notjustaboutcancer.blogspot.com ( http://www.notjustaboutcancer.blogspot.com )

laurie 5 pts

My advice as the mother of two boys - one who is gifted/LD and the other who is gifted (and soon to be tested for ADHD is to go ahead and do the testing. What you DO with the information is up to you - there are many ways to respond. But it does help to have as much information as you can.

Laurie

www.notjustaboutcancer.blogspot.com ( http://www.notjustaboutcancer.blogspot.com )

BarnMaven 5 pts

Going through the process of getting a diagnosis for my daugther was so incredibly painful. Its hard to hear doctors speak of your child in clinical terms. The testing, as much as you know its to help find out the issue, is hard to endure especially when your child scores low in particular areas. Now I'm going through it with my son as well, he's starting kindergarten in a couple of months. The neuropsych diagnosed him with anxiety disorder, the pediatrician believes he's bipolar and ADD. Who even knows what's next? I just work on trying to keep an even keel and observing behavior carefully and quietly, keeping my sanity and loving my kids.

Like you, its nice sometimes to find parents who "get" your child, though I've so far only found those moms online. The other parents at school avoid me and my children like the plague.

This was a beautiflly written article. Thank you.

Mary a/k/a BarnMaven blogs at http://www.barnmaven.com about single parenting, living with ADHD,having too many animals to count, dealing with ADHD/Bipolar kids and trying to find time to ride her horse.

Morgan Landry 5 pts

Back in the old days, we were just called "nerds" -- and it wasn't considered a medical condition or disability!

I eventually got around to doing the social skills bit and now the "neurotypicals" can't tell the difference. I tell people I have food allergies and they don't even notice the diet. My aspie/autie friends and those with psychological training know better and wink. They know I've come a long way.

And even if your kid doesn't do the social thing, he can always become an engineer. :D Trust me, Silicon Valley is full of them. He'll be fine.

Leslie Marin 5 pts

Thank you, Mir, for the emotional story. I fear my son may be on the same path as yours. He is in a special pre-school at 4, but hasn't been medically diagnosed yet. We also have twin 15 month old babies for him to compete with. We all struggle daily with finding the balance for him.

With concerned and informed mothers like you to discuss the positive sides, it helps get through the rough times. They are different, but they are truly diamonds in the rough. They are our babies and will always be perfect in our eyes. Stay strong and thanks for the inspiration!

Leslie Marin

wave412 5 pts

Thank you for sharing this. And thank you for taking the steps to help your son help himself.

When my brother was 12, my Mom was told that he had mild Asperger's, but she ignored it. Fifteen years later, my bro is a great guy, but still kinda different. Growing up has been a long and disappointing road for my brother, and I'm sorry that he was never encouraged to become aware of how he's different. When he gets angry with his life and obsesses on a hobby to make himself feel better, I wish my Mom would just admit that he needs help instead of dismissing him as OK.

shasta
bloggingwithmittens.com ( http://bloggingwithmittens.com )

MoreThanMommy 5 pts

Thanks for sharing this, Mir. Your blog is one that I started reading what feels like forever ago (before we were "mommy bloggers" and associated with freebies) and I've always appreciated your honest and direct writing style.

My son is... well, something. And always has been. It started with motor delays and motor planning issues and now it's an intangible something else. One eval labeled him with a threat of PDD, while another dismissed his quirky behavior as part of his genius. I suspect it's a little bit of both (starting to wonder if the two just happen to go hand in hand).

He's 4 and I've given up for now. He's doing well in preschool. His earlier sensory issues aren't presenting (except for distress at loud noises), his motor issues are barely noticeable during playground time with his classmates and he's making friends. Still, I'm waiting for the proverbial other shoe... For right now, we've decided to wait it out. It's incredibly hard to get a diagnosis at this age since, as you mentioned, they're all kind of odd in different ways. And I am not all that eager for him to be slapped with a label unless there's something they can do to help him.

I feel so fortunate to be raising kids in the age of the blogger. Connecting with other moms who know how this feels makes all the difference in the world. So, thanks again. It's nice to not feel alone.

Christy

Quirky Fusion ( http://quirkyfusion.com )

@morethanmommy

BlondieChicago 5 pts

I do not have children, but I really enjoyed reading this piece. It was like I was there with you through every moment. Thank you for sharing this with us. XXOO

blottedcopybook 5 pts

You know, you're clearly an amazing mother to your lovely lad. I wish him the easiest of transitions through the teenage years and into adulthood.

I did find this so hard to read, though. We're almost at the opposite end of the scale with our 4 year old son who is lovely and chatty, sociable and conscientious but has no filter, phenomenal tantrums and real issues relating to other people. Yet, our health visitor thinks he's absolutely fine and refuses to help us access any additional support or evaluation. I just hope that some day we get a doctor like yours.

Visit my blog ( http://www.blottedcopybook.co.uk )
Follow me on twitter ( http://www.twitter.com/blottedcopybook )

Mir Kamin 6 pts

Community is really key -- I remember feeling very lonely when I didn't know any other parents dealing with something similar, when the reality is that so many kids are diagnosed with various spectrum disorders and we all probably know someone whose kids have similar issues.

Keep advocating for your daughter -- you'll know how to best meet her changing needs. I still believe that love doesn't cure all, but it's an excellent start. :)

--
Mir Kamin
(BlogHer contributing editor)

Personal: Woulda Coulda Shoulda ( http://wouldashoulda.com/ )

Having it all with less: Want Not ( http://wantnot.net/ )

Mir Kamin 6 pts

I appreciate your feedback, Lee. I always find it helpful to hear from other parents who've walked this path before us.

I feel compelled to add -- and I'm trying very hard not to bristle or get defensive -- that our consideration of homeschooling for middle school is based upon concern for our son's basic safety. Unfortunately our middle school deals with a high poverty level and some unfortunate violence; our (neurotypical) daughter has already had several encounters there that threatened her physical well-being, but she (and we) were able to navigate those issues. Coupling that environment with my son's inability to 1) read a situation and 2) keep his thoughts to himself could spell very real disaster.

Would keeping him in school with his peers all along be the ideal? Sure, but not if it means putting him in harm's way.

I guess I just wanted to clarify that it's not a decision we take lightly, nor is it one purely to safeguard his feelings. Let's just say I'm glad we have another year to decide.

--
Mir Kamin
(BlogHer contributing editor)

Personal: Woulda Coulda Shoulda ( http://wouldashoulda.com/ )

Having it all with less: Want Not ( http://wantnot.net/ )

Mir Kamin 6 pts

Deciding how and when to intervene when our kids have special challenges is a highly personal decision, but I always tell people I really believe in that gut instinct. It becomes all too easy to doubt yourself, when really, you know your child best. Remember that you're his best advocate, and you need to do what feels right for your family. Good luck, Alita!

--
Mir Kamin
(BlogHer contributing editor)

Personal: Woulda Coulda Shoulda ( http://wouldashoulda.com/ )

Having it all with less: Want Not ( http://wantnot.net/ )

Mir Kamin 6 pts

Many kids with sensory issues just have sensory issues, you know. I'm glad you're open to hearing about other possibilities, but your son's path may be very different. I know you'll be there to get him where he needs to go, either way, Jenna.

--
Mir Kamin
(BlogHer contributing editor)

Personal: Woulda Coulda Shoulda ( http://wouldashoulda.com/ )

Having it all with less: Want Not ( http://wantnot.net/ )

Mir Kamin 6 pts

I'm just doing the best I can. Kids have a way of bringing that out in us, right? :)

--
Mir Kamin
(BlogHer contributing editor)

Personal: Woulda Coulda Shoulda ( http://wouldashoulda.com/ )

Having it all with less: Want Not ( http://wantnot.net/ )

katstone 5 pts

Thank you for writing about this.

My daughter was two-and-a-half when her Montessori teacher noticed something was amiss. After testing, we found out she had sensory processing disorder. But now it seems to me as I'm trying to study this as much as possible, and as she grows and I learn more about who she is and where and how she struggles, that she has dyspraxia and issues with executive function more than typical spd (or sid). Maybe. I just don't know. I can't tell. There isn't enough information out there for me to feel confident that I understand what's going on.

It's very frustrating because she is so bright but she often can't get her hands or her brain to do what she wants them to do. I wonder as she gets older (she's 4 now and has been in OT for about a year-and-a-half) if she'll have new difficulties, or her diagnosis will change as your son's did. I try to be patient even though I want to know RIGHT NOW!!!! exactly what the deal is and exactly what I can do to fix it ... as if it's fixable.

I love my daughter so very much and I worry about if and how her struggles will increase as the work she is expected to do gets harder and harder. I wish I had more mothers around me like you who have similar circumstances where we could talk with each other and share stories and ideas.

I feel a website or group forum coming on ... anyone?@postpartumprogr
Katherine Stone at Postpartum Progress ( http://www.postpartumprogress.com )

damainiacs 5 pts

You story had me reduced to a blubbery amount of tears. My son turns 5 on Sunday. Unlike your son we have had him in speech therapy for 2 years. He goes to a Special Education preschool. That was a difficult choice, but he was having problems communicating. My son has anxiety. I've always called him my cautious child, but it is more than that.

My husband and I disagree on what we should do. I want him tested and my husband wants to wait. My gut tells me that it is the right thing to do, your story confirms my gut instinct. My son, like yours, is a keeper. I just want to be the best mother possible for my son. I want him to feel the most comfortable in his own skin as he can as well. I want to not have to explain to others my son's quirks. I want all that you have seemed to achieve. I'm opening up because this is such a big theme in my life.

JennaHatfield 10 pts

As a mom of a son with a sensory disorder, this post was a hard read. But I am so thankful that you took the time to write it and share it here, not just on the other site where it originally appeared. Very thankful.

Keep being the amazing mom you are.

Jenna Hatfield (@FireMom ( http://twitter.com/FireMom )), from Stop, Drop and Blog ( http://stopdropandblog.com ) and The Chronicles of Munchkin Land ( http://thechroniclesofmunchkinland.com ), is a freelance writer and newspaper photographer.

Coupledumb 5 pts

My daughter is 17 and is lovingly called 'Fun Facts' by her friends. She has Asperger's, is visually impaired, partially deaf and her left side doesn't work well because of a stroke. She is looking at college applications as I write. Her Asperger's is just who she is at this point. Our family spends lots of time coaching her in social interaction. She still looks at me like a deer in the headlights when I ask her to get something from someone (doesn't matter who-a police officer, murderer, waitress). And I have spent many a hour being with her when she can't stop crying. Overwhelmed by emotions. Coaching her to identify these feelings that are choking her, short circuiting her brain. However, the best thing we have ever done is not limit her exposure to society. She spent a summer at Duke University by invitation when she was only 13. She handled it. Was it stressful for her. VERY! But the result was that she knew she could do it. She knows what 'normal' kids do so she is encouraged to do just that. I know this is a personal decision but IMHO homeschooling would be a great disservice to your son in the long run. He will have a very hard time readjusting to school.
I appreciate your story. It is not easy but I do believe it gets better.

Lee from www.coupledumb.com ( http://www.coupledumb.com/ )

Lisa Stone 6 pts

Your arc of anger, pain, worry and hope has me a little weepy here. I'm impressed by your ability to continue working with this doctor and have the "you told me so" conversation -- then again, I know you, and you'd do anything for your son. :)

FWIW, I think you're doing just the right thing by helping your son bond with other children and their families. Such a gift. Middle school is hard for every child, and the more connections and involvement their parents have, the better.

Lisa Stone, BlogHer Co-founder ( http://www.blogher.com/member/lisa-stone )

BlogHer is non-partisan but our bloggers aren't! Follow our coverage of Politics & News ( http://www.blogher.com/topic/politics-news ).