Tuesday, February 21, 2012

Autism 2.0: Siblings on the Spectrum

Photo credit: Suat Eman
My 10-year-old daughter, the amazing and awesome Pork Lo Maniac, has been officially diagnosed with Asperger Syndrome.

The process of requesting her evaluation, being evaluated by the school district and then by a private psychiatrist, and developing an education plan for her, has taken almost a full year. And we're still not done.

We're not done with the evaluations; a follow-up Occupational Therapy eval is scheduled for sensory issues, fine motor delay, and motor planning deficit. We're not done with the IEP. We're not done hashing out the details, like whether an FBA (Functional Behavioral Analysis, which in this case would help identify anxiety triggers, for example) is appropriate. Or details like exactly what kinds of therapies she needs, and will receive. Important stuff.

We are fortunate. The Pork Lo Maniac's teachers are amazing, and have been going above and beyond the call (and above and beyond the accommodations in her 504 Plan for ADHD) all year long. The school social worker got her into a social skills group before the evaluation was even complete. And the principal, who is in fact a God Among Educators, has backed our entire family 100 percent.

We are fortunate. We already know a lot about Asperger. We've spent the last two years navigating the world of special education and the remarkable quantity of acronyms associated with special needs.

We've also spent the last two years praising Little Dude's awesomeness, and crediting his Asperger as a huge part of what makes him the awesome Little Dude he is. We talk daily about how we are each unique, and how everyone in our family has things they struggle with, as well as things that come easily to them. We talk about the benefits of ADHD (hyperfocusing for the win) and the benefits of Asperger (narrow, focused interest for the win) all. the. time.

We talk about how we don't want to fix Little Dude, but rather to help him find the world less stressful.

So we're going into this in a completely different way than we were when Little Dude was diagnosed at age four.

But it's still hard. No matter how well-prepared you think you are to hear the diagnosis, there's a certain amount of soul-crushing pain that comes along with hearing "your child has autism." There just is.

One thing I can't emphasize enough is the thorough nature of her evaluation. The careful decisions made by multiple clinicians. The vast amount of input taken from not just her parents, but from her teachers and even her Girl Scout troop leader. The observations: in-home, in-school, and in a clinical setting with a "novel peer."

It was thorough. And the diagnosis is accurate. We have known in our hearts and in our guts, for nearly a year, that the Pork Lo Maniac has Asperger. She has been a part of the process all along. She wanted this evaluation. She wanted an understanding of how her mind works, and to know that she isn't "stupid" or "a monster," as she was growing to believe.

So right now, the overarching feeling is one of relief. Our daughter is relieved to know that there is a reason for her social difficulties. A reason she feels like the rest of us are speaking a different language. A reason she sometimes needs to shut out the world. And also, a reason for her consuming passion for all things Chinese, which has lead to her teaching herself Mandarin.

As parents, we have relief that the evaluation process is coming to a close, and we're going to be able to support our daughter in a way we couldn't without the diagnosis. We're going to receive parent training on better ways for us to help her with her meltdowns. She's going to get more support in school, and hopefully, a greater measure of understanding from everyone in her life.

One of the most challenging parts of this situation right now is helping her siblings process this, and in particular, the Pork Lo Maniac's twin sister, Cookie. Over the last year, we've had to entirely shift the way we parent the PLM, and Cookie has had to, in many ways, shift her thinking about her twin. The diagnosis ultimately helps Cookie understand her twin more. But as a twin, there are ways in which this impacts her, in which it can never impact anyone else.

I'll write more about our epiphany about the PLM's Asperger Syndrome, and about the process of her evaluation, soon. It's common for girls to be diagnosed later than boys, and it's important to look at why that is, and how autism, especially in its higher-functioning forms, manifests in girls.

In the mean time, I leave you with this: as I said in a recent post on Strollerderby, anyone who thinks the autism or Asperger diagnosis is being handed out like candy, can suck it, suck it, suck it.

I created the above image for a post on Strollerderby:
Asperger's Is Over-Diagnosed? You Try Getting Your Kid Evaluated

41 comments:

  1. Thanks for posting this. I needed to read it. In an hour, I take DS2 to the Dr. to start his evaluation. DS1 and DS3 are already diagnosed with ASD. Glad to know someone else is on this path of sibs with ASD too.

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  2. Thanks so much for your post. I especially appreciate your acknowledgment that the diagnosis was still " soul crushing" ( love your writing). We are gearing up to this possibility with our teenaged son, who has his own list of acronyms, as well, and I have been surprised by my own grief over this new label. Nice to hear my own feelings affirmed, and in such an eloquent way. Best of luck with the continuing adventure. Your children are so lucky to have such a tireless crusader as their mother.

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  3. I remember the relief we felt when our son was diagnosed. Bittersweet, but such a relief to have a name for it and a way forward to help our children be the very best they can be and be proud of who they are in all it's manifestations and flavors! I love that your daughter *wanted* to find out and feels relieved, too. THAT is a gift!

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  4. I thank you too. We just went thru this with our 9 yr old. He has pieces of an Asperger's diagnosis, and anxiety diagnosis and other things, but not enough for an official diagnosis for either. In fact the doctor is leaning more towards non-verbal learning disorder. But it is different this time around than it was for my 5 year old and his PDD-NOS diagnosis. This time, as you say, my 9 yr old KNOWS something is different about how he learns and as a team we need to help him understand that. And understand that it's okay, as you say, to want to spend time researching how he could have kept the Titanic from sinking. Or writing his own music. Or shutting out the noise of the world so he can just be with his thoughts.
    It's amazing how smart we are as parents now, no?
    And yes, those who think these evals and diagnoses are handed out like candy? Can suck it.

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  5. Great piece - but I know that it's like stopping for a quick sip of water in the middle of a marathon. As the husband of an Aspie wife and Dad to all three Autistic kids I know of that which I speak in saying that there is such a mix of feelings for you in all of this. Although most families of Austism live isolated within an isolate community (box within a box), just know that you are not alone. And never forget that PLM may have some challenges but she also has some unique gifts that the world so deperately needs. She can cure cancer after she learns Chinese, right?

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  6. Thank you for this. I have triplets that are all over the spectrum, and sure enough the girls were diagnosed well after their brother. It has been a long process---but like you, we have been unbelievably fortunate in the amazing teachers and therapists within the school system. I hear nothing but horror stories and the fights that have to go on daily for parents in dealing with the schools. I thank my higher power every day that ours have been so amazingly supportive.

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  7. Thanks, everyone. @Niksmom, yes -- that she wanted the evaluation made a huge difference in our whole process. She's been part of every decision along the way. So there's at least something positive about a diagnosis at age 10, versus a diagnosis at age 4!

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  8. I'm glad you're all getting that level of understanding. It's frustrating for everyone. Our oldest son wasn't diagnosed until age 8 1/2. Our approach, which sounds a lot like yours, has been that it doesn't change who he is, it just gives us all a better understanding of who he is. In that process, it's allowed us to be better parents to him, and get better accommodations so he can better learn at school, better therapies to help him cope when he needs it, etc. No matter when someone is diagnosed, it's still a process.

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  9. I'm still blown away that you didn't even suspect Asperger's until PLM was 9! I suspected it when my daughter was 3.5! Granted, her case was probably more "severe" and presented itself in a more typical manner. Now that she's 8, she's able to cope with things so much better! I hope you have similar success with PLM!

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    1. Whoa, smug much?

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    2. I'm kind of blown away by your incredibly unhelpful comment. Are we racing?

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    3. It's okay, guys. I don't think she's trying to be smug -- I think she's blown away that this is how it can work with girls. We actually did suspect it before this, and asked more than one of her psychiatrists. We were always assured it was "just ADHD." Especially with girls, there can be some social components that really aren't visible until the "tween" years when other girls start moving forward socially ... and an Aspie girl doesn't. I'll write more about it soon, I just wanted to get this announcement off my chest and move forward.

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    4. But how much do I love that you guys are ready to defend me? TONS.

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    5. Gosh, 10 is not old for a diagnosis! I was diagnosed with Asperger's syndrome in my 50s, and I didn't even suspect it until about 2 years before the diagnosis. I was aware that I was unusual, and I even speculated that I was genetically different to other people, but I had no idea it was actually mild ASD.

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  10. Stephanie G from WisconsinFebruary 21, 2012 at 8:21 AM

    Our 1st grade son was diagnosed with high functioning aspergers last year. We have him in play therapy as well as finding different ways of dealing with his meltdowns and looking at him. All of which has helped. We already have his appt next week to get him on trials of meds because his actions are uncontrolled and affecting his classroom as well as his social life. But I tend to not think of him as "aspergers" or "on the spectrum" because the god awful truth is what you said. If I stop and acknowledge that this will be a life long lesson for him and me to learn, to always be struggling so hard to maintain "normal", to crisis manage, to try and teach him social aspects that he just doesn't get -- it's soul crushing. I found myself having to stop half way through this post to bawl my eyes out. But maybe that's good. It will help me get past my own wall.

    Al of this is ironic BTW, because I have read your blog for it's entertainment value now for years. Now I see it through different lenses.

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  11. My eyes are prickling with tears - not with the sadness of empathy, not with the pain of the situation, not with the lack of caffeine in my system - but with the unmitigated joy and hope and the helium bubble of relief rising in my chest that these kids have YOU as their mom! I have said this to you before - enough that you might have me on my "stalker v compatriot?" list - but you are an **exceptional** mom! And yes, I know you will say "They are my KIDS!" and yes, I agree because that's how I feel about MY Aspie guy. But the ferocity and volume of love one feels for their child doesn't always translate into a mom's access to her inner resources that she needs to fight this fight, every moment of every day while simultaneously doing all the OTHER non-negotiable shit a mom has to do.

    Nest time you are in Massachusetts, I am taking you out for a drink! 'Cause lady, you DESERVE it!

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  12. I highly recommend the book Asperger's and Girls. It will give you more information as to why girls are undiagnosed as girls symptoms can be different than boys. It will also give you some things to think about concerning girls and ASD and the different kinds of support they/she will need.

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  13. We came to our diagnosis late, too. It's hard to hear, even if you knew it all along. The story of the sibs of ASD kids is still one we are trying to work out. Keep fighting the good fight!

    www.momintwocultures.com/2011/02/to-diagnose-and-to-label.html

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  14. This post has really hit home for me. I have some concerns about my toddler, concerns that I can't quiet categorize. I worry about his all-consuming passion for trains. Is that normal or is it something else? His difficulties with transition--normal toddler stuff? I cannot figure it out, because his difficulties are totally different than his older brother's (who has autism). I'm so confused and worried and just tired.

    Someone told me last night that the second kid's diagnosis is much easier to take (she has 2 boys on the spectrum) but that just sounded like a big pile of BS to me. I'm thinking you might agree with me on that.

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    1. Hang in there, Patty. I have one boy on the spectrum and one "average". Both have their specialties punching my buttons but I get tons of praise at school for how well mannered they are. Have your 2nd son evaluated as soon as possible. (our district evaluated at 3) Find a supportive playgroup if he's not in preschool and you will receive a lot of feedback from other moms. Some will be helpful, some you will practice smiling and saying "thank you" but all will be useful when determining if your son needs extra services in school.

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    2. I think dealing with life post-second (or third) diagnosis is a little easier, if only because you know it's a likely possibility instead of a "let's rule this out" process. I wasn't quite as blindsided by rounds 2 and 3. It's also not "new" -- you already have fought a few battles (and learned from them), and often know where to turn for help. In that sense, it's not as bad as the first time.

      But does it suck and hurt? Oh yeah. That part doesn't change. We're mid-workup for Round 4 (oh, we're SO genetically blessed!), and I am just as torn between "Please be wrong and this isn't it" and "Please be right and it would explain all of this" as I was for Round 1.

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  15. can the God of Education write a book to help other principals (who have their heads where the sun don't shine)? I feel i need to come to PA so we can have all apporpriate testing done. And you have parental classes so you can learn how to help exactly? And the teachers do pro-active things before they have a statement from the dr ?

    You are simply the best!! Blessings to you and family/keep writing !!!!

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    1. I'm totally going to suggest that our principal write a book. He's amazing. And yes, both the school that Little Dude attends, and the school that the Pork Lo Maniac attends, are helping us set up parent training at home as part of "wrap-around services." I just want emphasize that we are NOT in a wealthy school district at ALL. We just have amazing, caring professionals who are dedicated to helping each unique child.

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    2. I will keep checking back ! Our principal actually said at an IEP meeting that he too gets anxious sometimes!! The school psychologist tried to change our Dr.'s diagnosis. Imagine, it gets worse.
      I'm amazed at the help you get through school--I need to hear all of it.

      Jello shots for all :)

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    3. I want wrap around services... I'm jealous now. Sigh. But I'm REALLY glad you have such amazing support. I have great schools, great principals, etc. and it does make a massive difference, that's for sure.
      I remember when boy #2 got the PDD-NOS. Don't know why it still hit hard, though differently than w/boy #1 getting the Aspergers.

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  16. Thank you so much for this post! My son was just diagnosed with Asperger's 6 months ago at 10 years old. I identify with so many of the things you said. We always knew he was different, but it took SIX YEARS to get a diagnosis, and he had to have a massive anxiety attack (two weeks of hell) to get a referral to the right specialist! Even though the diagnosis was at first soul-crushing, it has come to be a huge relief. He thought there was something wrong with him, and he wanted to die. Now he knows there are reasons for his differences, and those differences can be a gift. It just means more work for now, but when he accomplishes something, like heavy lifting chores to calm his senses, social skills class exercises, or enduring a written test at school, he feels such a sense of accomplishment. Interestingly, he was a twin as well. His father will likely be diagnosed this year, something that has brought us incredible peace of mind, since it explains so much. Knowledge is power! Again, thank you for expressing it so well. It really helps to know that I'm not alone out here.

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  17. I'm fascinated by the difference between parents who fight for a diagnosis (whatever it may be) for a child and those who refuse to seek a diagnosis. You are right that, in most cases (there are some sketchy clinicians, in my experience psychologists, who jump quickly to this diagnosis), an ASD diagnosis is difficult to get, especially in an older child and particularly in a girl.

    One of my kids was diagnosed with autism/HFA at age two. His younger brother, now school-aged, has ADHD and Asperger traits (especially social problems, wanting to have friends but continually misinterpreting what peers are doing and saying), and we've been worried about the challenges he is facing. We set up an evaluation with a developmental pediatrician, for which we waited months and months. When the day finally came, the doctor essentially said, "He has a little of this and a little of that, but let's wait and see what happens." That's fine--we were hoping for a solid answer, but we don't want to jump to conclusions. And nothing is stopping me from helping my son as if he DOES have an ASD diagnosis. Since most of the help he gets is provided by us at home, there's really no need for an official diagnosis. I know some people have great school districts that provide all kinds of awesome social groups and other great options for ASD kids, but ours does not. All a diagnosis does in our school is stigmatize a child and get him pulled out of the classroom by his arm ten times a day.

    I have several friends and family members with kids who are clearly on the spectrum, but these parents actively refuse evaluation and diagnosis. They feel their kids are "quirky" and a diagnosis will just pathologize "normal" personality traits that fall under the umbrella of to-be-expected human difference. And this seems to be where the DSM is headed as well. If they eliminate Asperger Syndrome as a diagnosis, they are essentially saying that kids like ours are just kids who are "different." This seems fine to me regarding "mild" Asperger Syndrome--kids who can make and keep friends, do well academically, and go on to live independently. But my older son's HFA/AS is not "mild" by any means. He is going to need a lot of support his whole life. Perhaps a case like his will be absorbed into this new all-encompassing ASD diagnosis.

    I have been thinking so much about Asperger Syndrome as a diagnosis these days, partly due to the proposed DSM revisions. My older son has gotten little for his diagnosis. An IEP was worthless because the team couldn't write a good one, and his teachers were unable to implement it properly anyway. There is no "cure" for ASD, and just about every "therapy" is quacky and a waste of time and money (don't even get me started on how much money we wasted on private OT). So we handle it all on our own at home. The best books I have found are:

    1. Parenting Your Asperger Child by Alan Sohn
    2. Quirky, Yes--Hopeless, No by Cynthia Norall
    3. The Explosive Child by Ross Greene

    The older my son with HFA/AS gets, the less likely I am to tell people he has this diagnosis. They can see he's different, and they probably can guess what he "has." But I no longer think it's something we have to declare, and my son doesn't have to think of himself as someone with "autism" or anything else. He is who he is.

    Here's an interesting recent piece from the NY Times: "I Had Asperger Syndrome. Briefly."

    http://www.nytimes.com/2012/02/01/opinion/i-had-asperger-syndrome-briefly.html

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    1. I don't have anything to add to the discussion, as I don't have any children on the spectrum, but I do want to express, once again, how in awe I am of your steadfastness and perceptivity in raising your kids. You are a treasure.

      ~physicsmom

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  18. @ Patty O. Yeah, pretty much BS. My older son (11) has Asperger's, our younger guy just has the generic ASD label for now but will probably also be labeled as an Aspie. He got on the bus this morning to start his first week of ESE pre-K. Go for an evaluation, even if it's just through your local school district. Things like developmental scatter would show up there - things that I know that I didn't even think about, even though I'm already very familiar with spectrumites and should have kept that in mind. My two kids present very differently, the older one being incredibly stereotypically aspie, while the younger guy presents more like HFA ( but is much more independent, even at 5, than his older brother).

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  19. It took us over a year to get a diagnosis, and we're still waiting for him to get any social skills instruction. He desperately needs to learn how to cope with his feelings and with other children. I hope that the rest of the process goes smoothly for you. May your school system have more resources than mine...

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  20. I just read this sentence "And also, a reason for her consuming passion for all things Chinese, which has lead to her teaching herself Mandarin" and said out loud: AWESOME.

    Great writing. And yes, they can all suck it.

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  21. I've been following u since the beginning and have often felt that PLM reminded me of my daughter. :D My only child, my daughter was diagnosed with Aspergers at 10. And it was not easy. I've noticed that it's only been in the last year that girls on the spectrum have gotten the attention that is usually reserved for the boys. We did NOT get a whole lot of support from school personnel when i asked for help. Even her doctors and counselors told me it was her ADHD, or more specifically her impulsivity that caused her social awkwardness. It wasn't until i saw the ABC interview of the family of that little girl who got lost in the Everglades a couple of years ago that it really hit me. She behaved just like my daughter. I'd never met anyone who had a girl with Aspergers before! It was then that i could challenge the naysayers and formally request a complete IQ and full evaluation of my daughter. It took over a year just to do that!!! (Suck it, suck it!!!) She's now 13 and we're struggling with anxiety and adolescence and have yet to be able to meet her needs here in yes, in TEXAS. I appreciate having you in my "circle" and am so grateful to know that even though, i could only have one child, she is not alone. That we are not alone.

    I look forward to your next post and look forward to hearing what kind of treatments and therapies are being recommended to help her deal with sensory issues and anxieties.

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  22. "We were always assured it was "just ADHD." Especially with girls, there can be some social components that really aren't visible until the "tween" years when other girls start moving forward socially ... and an Aspie girl doesn't." Please, please write more about this. I have a 6-year old who I feel like I'm on the same path with and can't find the right diagnosis or people to help me. I'd love some stories about someone who's been there. THANK YOU!!!

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  23. Hey, "benefits of ADHD (hyperfocusing for the win) and the benefits of Asperger (narrow, focused interest for the win)" ---
    what's this all about? Are these issues linked? I know you're not a dr., but you play one on tv, and we are all about these issues at our house, too! All best to you and the gang.

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  24. I love reading your posts and you are so inspiring. As per one of the comments above, by your posts, one can tell what a great mom you are. Your kids are lucky to have you. I am always amazed at how you do it, and you make me want to do better with my own and to stop complaining. I have learned so much more about autism from your site and links you've given, and it's not because mine have been diagnosed, but just to be more knowledgeable. The worse is not learning when you can.
    I am a twin though, and I can only imagine what Cookie must be feeling, but you are right it is completely different from what you or the other siblings will feel.
    Thanks for sharing.

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  25. What led you to seeking an ASD diagnosis for your daughter? I'm asking because I'm considering seeking evals for my younger son (he IS ADHD/anxiety) and while those 2 diagnoses were confirmed when he was nearly 7 years old, I oftentimes wonder if ASD is plaguing him.

    Everyone talks about how sweet and well-behaved he is.... but he never gets invited over to other people's houses (except birthday parties). He's NEVER had a sleep over to other friend's houses except our old neighbors and even that stopped after a while.

    Teachers say he's very social at school and he talks fondly of other kids, but again ...... why is he never getting invites to come over?

    Food for thought I guess.....

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  26. I cannot begin to understand what you have to deal with each day. And I don't mean 'deal' in a negative way. When I started reading your blog, I always laughed and found your entries to be as educational as they were entertaining. Now, I applaude you. You have truly become more than an advocate. You are informed. You are positive in nature. You are skilled in the 'system'. You are a blessing to all parents who try to navigate the world with children who have been labeled as different. May you continue to be a force in child advocacy. You may not need or want such praise, but Bravo to you.

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  27. Wow, this is so familiar! Our youngest girl was diagnosed ASD at 2 when she was still non-verbal, and it was the agonizing and drawn-out process of going through all the thousands of pages of questions, the interviews, the evaluations etc that finally opened our eyes and helped us to understand our oldest girl, too. She wasn't speech-delayed but oh, all the other things I recognized in those pages that described her to a T! All her oddities and struggles suddenly made so much sense! The sensory things, the lack of eye contact, the physical and emotional struggles. It was good to know, but we didn't rush to diagnose immediately. It was finally her complete and utter inability to recognize faces (probably because she hardly looked at them) as much as the anxiety, the social blindness, and the erratic emotional swings that made us decide, in spite of the overwhelming mountains of work entailed, to get formally diagnosed what we already knew. She, too, was on the spectrum -Apsberger's (although this term may soon just become Autism, too with the changes in the DSM V). It was a relief for her too, and she is perfectly comfortable telling people. It is harder to see in girls, and people still say the same things (Really? They don't look autistic! Are they sure? etc) but it certainly has helped us to help her, and that makes it all worth while. Bravo, Mama! they're lucky to have you!

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  28. I've been following your blog for ages - since Little Dude was diagnosed - how did I miss this post?? I think I am quite Aspergerish myself - there are just so many ways that I am not like other people, and after trying for 30+ years, have finally realized that I will not be able to change these things. It helps me to understand that it's a neuro-difference, not a failure to do or be a certain way. I can't be normal/neurotypical no matter how hard I try - I am not wired that way. It's especially hard for women because we're supposedly the more social and nurturing gender, and when we're not we suffer for it more than men. It's been a long year for us too, DD#1 diagnosed with ADHD and auditory processing problems, DD#2 diagnosed with SPD and mood dysregulation, and me diagnosed with ADHD. The apples are not falling far from the trees, that's for sure!

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  29. I think I know why there is the perception that Asperger's diagnoses are handed out like candy. In my experience, Asperger's is what lazy/incompetent school staff members call any child that doesn't fit into their worldview. If they can refer a child for Asperger's evaluation, that gives them a six month/one year pass on actually trying to deal with the child. This is in no way a diagnosis, but some people, like me, hear a "professional" express the opinion that their child's problems come from Asperger's and wrongly believe that they have received a "trendy" diagnosis. I know far too many children who have been referred for testing solely because someone in the school system felt they were "too hard" to deal with.

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