Posts Tagged ‘Autism Spectrum Disorder’

I ended up wearing rainbow colors that day that I wrote about doing anything, even wearing blue. I just… I realized that supporting her meant more than wearing the blue because it’s her favorite and she asked me and she thought I’d be celebrating her. It meant so, so much more and I tried to explain why I wore a rainbow-flower skirt with a purple shirt (my own favorite color) in a way she could understand. But how do you explain that wearing blue, lighting it up blue, is a trigger event and silences Autistic Voices? That anything explaining away why it’s okay is really not okay?

And that’s what I think I did in that entry, and I wholeheartedly apologize, no qualifications.

So how did I explain to my daughter why I broke the blue promise…

Rainbows and flowers are love, and everyone loves flowers. Autism is full of wonderful colors, not just blue, and even if the flowers in my skirt were fuzzy at the edges they were far prettier than puzzle pieces all over the school walls. She nodded in agreement.

I told her that I wanted her to be able to choose from all of the colors in the rainbow when she’s making friends, when she’s thinking, when she’s getting dressed, when she’s looking outside, all just like when she’s painting or making crafts. She nodded more with each example.

I told her that an agency named Autism $peaks created the Light It Up Blue idea, and that we don’t like all of their ideas because some of their ideas include wanting to cure Autism. I asked her if she remembered hearing about that several days before, and she nodded with a Very Serious Expression on her face.

Then I explained that there are other supportive agencies that want to help her and others like her grow and be happy, and learn to be a self-advocate as she grows up and becomes a teenager and an adult.

I explained that sometimes we were going to have to have different kinds of conversations now about how some people think Autism is not a good thing and how we can change those ideas by showing them the good things and teaching them about the ideas that they don’t quite have right. That sometimes people believe things about Autism that aren’t true, but that we can help educate them. She nodded. She seemed to like the idea of being an educator instead of the student.

I explained that there would be times we would be talking about the better ideas that Mommy has read about from the good agencies so that Mommy can better understand who is a helper and who is not… and that I think she’s getting old enough to learn those things too.

She nodded her head, with a furrowed brow, and said, “Mm hmm.”

“Do you have any questions?”

“Can I still wear my blue skirt?”

“Yes. Always. You can even keep blue as your own favorite color.”

“Mm hmm. Yes.”

“Do you want to ask me more?”

“I don’t know.”

She walked away. So that was that.


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geneThose of you who follow my blog and those of you who know me know that my Sweet Girl, my middle daughter, is Autistic.  You know that the sun rises and sets around her as it does with my other daughters.  I am not just her advocate, I am also her ally. I’ve written about raising her up to be proud of every part of herself. I’ve written about teaching her to be a self-advocate. I’ve written about experiences in public, and how various individuals have responded to her various behaviors and comments we’ve received. I’ve written about and shared news articles about Autistic teens and young adults who have had interactions with law enforcement that had no training or care about being in the presence of disabled individuals and the abuse and deaths that have occurred as a result. I’ve written about the high rates of abuse and bullying that occur among Autistic individuals and other individuals with disabilities, how it’s much higher among neuro-diverse individuals than among non-disabled and non-autistic peers. I’ve written about my disdain for Autism Speaks.

Now, I’m writing about Google and its collaboration with the project Aut10K created by Autism Speaks.  What is it, you ask?


Nature World News: Introducing The World’s Largest Autism Genome Database (click)


Autism Speaks announced a collaboration with data supergiant Google Cloud Platforms to make the world’s largest database of genomic sequence information on individuals with autism spectrum disorder (ASD), creating an invaluable autism research tool that can be used anywhere in the world.

Book Wright, the co-founder of Autism Speaks, announced Tuesday that the organization would be collaborating with Google to launch the Autism Speaks Ten Thousand Genomes Program (AUT10K) – a project that intends to make the world’s largest private collection of DNA samples open to the public.

We already know through reputable research for the past couple of decades that Autism Spectrum Disorders are genetically based.  Yes, it’s suspected that in some instances environmental factors can trigger or exacerbate symptoms but there’s really very little doubt among legitimate scientists that ASD is genetic, is typically hereditary, blah blah blah.  Why this seems to be news to the world, I don’t know.  Why it’s news to Autism Speaks, I really don’t know.  Except instead of Autism Speaks embracing this news in order to embrace the community and start including Autistic individuals in making decisions about themselves, in making proclamations about themselves, AUT10K is happening.

Autism Speaks is still trying to portray themselves as Autism Advocates, as allies, but this project is going to do far more harm than good.  It’s because the goal of Autism Speaks is to continue to portray autism as a tragedy, something separate from the individual, something to be cured, and as an illness.  They continue to portray the belief that autism should be cured, eliminated, reduced because autistic individuals are too “expensive” in their medical care costs and education costs.  Michael Rosanoff, associate director of public health for Autism Speaks has been quoted as saying about a cost study,

“This study shows us what we’ve all known but never had the data to support — that autism is alarmingly expensive.”

They also have an info-graphic about it.I didn’t doctor this, I just took it directly from their site (I think it was Facebook).  It’s used to illustrate the idea that Autistic individuals are a burden on society, a COST to society.  Do we understand the implications of that language?  Let’s reduce the cost, is the implication.  How do we reduce the cost? Cure, eradicate, eliminate.  Sounds an awful lot like encouraging society to endorse eugenics.  COST TO SOCIETY via Autism SpeaksEugenics is scary, people.  It’s something many have applied to their belief systems in order to explain their despicable attitudes towards individuals that have various disabilities.  Click on this link to see:  Bad Cripple: A Reply to “What Should We Do About Severely Impaired Babies”.  People really believe this stuff.

Autism Speaks launched the AUT10K project in collaboration with the Hospital for Sick Children’s Centre for Applied Genomics in Toronto.  This is a fact.  They view Autistic children, teens, and adults as sick individuals that need to be cured.  This is a repeated theme in their info-graphics and on their web site.

So, you want to know how this project will be harmful?  Check out these reliable links.  They’re not propaganda sites, they’re Autism Advocacy pages.  They’re pages run by Autistic individuals.  THEY are the people that you want to listen to.

Autism Women’s Advocacy: Dear Google, Do No Harm.

Autistic Self Advocacy Network: Community Concerns Regarding the Google-Autism Speaks Ten Thousand Genomes Program (AUT10K)

Google – Stop supporting Autism Speaks and AUT10K (with petition at

As always, I could go on but today I’m not really feeling well.  I’m home sick and having trouble concentrating.

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Today’s post is inspired by this blog entry on another blog I follow:  i like being autistic | a diary of a mom.  I had this in my head for a while, but as usual Jessie over at Diary of a Mom seems to read my mind, heh heh.

A couple of weeks ago, we were out at a barbeque.  It was a gorgeous day; sunny with a few clouds and a breeze; hot but not unbearable in the sun; completely perfect in the shade.  All of my daughters were enjoying their day playing with their friends and having fun.  Sweet Girl was having a great day interacting and self-advocating and even finding foods to eat. I sat for a while talking with someoneat the party and we got to talking about Autism as frequently happens. She asked me some questions eager to learn about ASD in general and some questions specific to Sweet Girl, and she became thoughtful.

Then the Big Question that I dread more than any other, and am inevitably asked.

“Do you ever wish she didn’t have Autism?”

I tried to explain that I love her, that her ASD makes her unique, and I wouldn’t change her.  The questions came about along the lines of,

“What about the difficult moments”

because obviously, I white wash those moments for people when she’s having a great day… because I want her and our family and friends to enjoy those days.  When they see her, she’s on her best behavior most of the time.  She’s “on.”  She’s at an age now where she’s self-conscious about melt-downs, and it’s not something that I ingrained into her.  She’s never much liked anyone even seeing her cry.

I give them glimpses into her behaviors and the rough moments and hours and days if it seems they really want to know… most people who know her, though, have seen it firsthaStillnd.

Still, it’s exhausting to talk about.  I also realize that it contributes to the negative down-talk about Autism.  It perpetuates the belief that Autism is more negative than positive.  It perpetuates the belief that as a parent, I must want my “real child” rather than the autistic one.  I’ve blogged about her, and still do, about the bad days.  It’s partly what the blog is for.  It is, after all, my blog and yes, as a parent, I need support but I need it as a parent to three children.

“I would not change her, even for the most difficult moments.  I won’t lie, it’s hard.  But she’s wonderful.  I couldn’t change her.  I couldn’t take away such an important part of her.”

I tried to explain all of the positive up-talk that we’ve spent years doing, how she’s not the only one working hard to cope with a world not made for her… we’re working hard to live in that world WITH her.  We’re working hard to understand her.  We’re working hard to make sure that she knows that our efforts are never to change her, but to help her learn new things and use her knowledge to be more independent.

We’re working hard to try to allow her to become the best self-advocate she can become, and prepare her for future relationships and jobs and life and we maintain a negative outlook and view her ASD as a negative thing… it does no good. If we view the ASD as our obstacle, then we’re bound to struggle harder and grow to resent it.  Instead, the obstacles are better viewed as things that we and she need to educate ourselves on and learn to cope with.  Her personal obstacles and difficulties are things we help her with every step of the way.

Some days are great, some are bad.  Some of the concepts she gets eventually, and some are much harder. I always have to go into something with her assuming that she understands what I’m teaching and encourage her to ask questions.  I assume intellect and willingness to learn.  I want her to always assume that I love her in spite of her most difficult traits, the same as her sisters and her daddy and other family and friends.  She’s no different that way. But suddenly I could tell I was losing this person I was talking to.

I was “teaching” too much.  Sometimes I lecture without meaning it to come out that way.

I decided to try a different tack. I did something that I usually only do in private, a game that we play that has helped reinforce just how valuable her entire self is.  I knew I was taking a risk in asking her at all, at having her response be to tell me,


I called Sweet Girl over to us and got her engaged.  I asked her the question I’ve asked before:

“Hi Honey.  I was wondering, would you like me to hold onto your Autism for a while? Maybe put it in my pocket and keep it safe?” (other variations have been asking if I might borrow her Autism)

“NO! You may not have my Autism! It is MINE! I need it!”

“Okay! Just checking!”

We had a smile over her response, I gave her a hug, and she skipped away.  I counted myself lucky that she didn’t scream at me for asking a clearly stupid question.  She would have been justified.  I felt Sweet Girl had made the point herself very firmly and more succinctly than I ever could.  My dear 11 year old self-advocate.

I’ve been catching her on my Kindle recently going through the photo album, which is directly connected to my Facebook photos.  She’ll pore through those photos for hours.  Sometimes she’s looking at the cats’ pictures; sometimes her little cousin; sometimes when she and her sisters were little.  But sometimes… sometimes she’s looking at the Autism Info-Graphics and inspirational quotes and images.  She touches them and caresses them, smiling.  Sometimes she asks me why I found them and shared them on Facebook so that she can hear me say,

“I saved them and shared them because you’re special to me, and that means your Autism is special to me too.  It’s part of you and I love every single bit of you.”

::nodding:: waiting for more:: “Yes, that is good.”

“I’m happy you think so, honey.  I love you just the way you are, just as much as I love your sisters, always, and the things that make them special too.”

::nodding:: wanting more::  “Yes, mmm hmmm.”

“I want to teach people that don’t know about Autism that Autism might be hard for you sometimes, but it has lots of great things about it too.”

“Yes, I have my Autism.  Do not take my Autism.  No one can have it, no one can take it away.” ::frowns:: “No one should take it away.” (this was after a discussion when she asked about an info-graphic that talked about ‘cures’ and the thought of curing her ASD made her angry) “These are MY pictures, Mommy.  You saved these for ME.”  ::soft smile::

And there you go.

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I figured it out! Why my shoulder/shoulder-blade/myofascial pain has been so agonizing since I got up yesterday.  I blamed my PCP from my Monday physical.  I think she’s only partly to blame.  Well, not her directly but those terrible examination beds.

I think the real cause was getting kicked and punched all up and down my entire right side from my thigh up to my shoulder from a particular child who really, really, really didn’t want to get out of bed and then didn’t want to get off the couch to continue getting ready to go to school.  I think she hit a Fibro trigger point and some nerves.

It’s only slightly better this morning.  I can function better, since I was able to keep up with the pain management, and getting some coffee into myself this morning = happier Jessica so far.  By the time I got back from, well, all appointments yesterday I was nearing “vicious” and I hope to avoid that today.   My mood certainly didn’t improve by getting stuck in traffic for two HOURS yesterday coming back from another annual appointment that women love during which my mood had lifted somewhat when I saw that their weight scale weighed me seven pounds lighter than my PCP’s scale.

A drive that usually takes 15-20 minutes.  Two hours.  No.  I almost got smushed and shoved off the road by a pair of semi-trucks when trying to merge into the insanity from other insanity because they were at the point where, you know, I had no choice but to merge and they just wouldn’t allow ANYONE to merge.  So I ended up having to take an exit and I got lost in Hartford and ended up over the river in East Hartford but got home far faster than if I had stayed in the traffic anyway.  So thank you, asshole semis.  You saved me even though you almost killed me.  It almost made the earlier 1 hour and 45 minutes worthwhile.  I should really thank my GPS for this one.  You know, since I got lost.

I need to remind myself to stay off of Facebook on the worst of the worst days.  I usually do, but not yesterday.  😦

Ok, so can I grow flowers if my husband let grass grow in my plant bed and we just rototill? Or do we have to lay down topsoil before planting? I have a fairy garden to put out and it wouldn’t have been a problem two summers ago.  😉

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English: Police issue X26 TASER

English: Police issue X26 TASER (Photo credit: Wikipedia)

When I first heard this story, I was saddened and slightly sickened at the thought that a police officer would think he would have to use any force at all on a young woman that was wandering naked and had no means of defending herself or attacking anyone with any weapons.  I thought that maybe there were some extenuating circumstances, and the young lady was perhaps severely mentally ill and lashed out violently and the officer had no choice in subduing her as he waited for back-up.

But then more details started to come out, and that sick feeling deepened.  It wasn’t just a young woman.  She was not mentally ill.  It was an 11-year-old child.  A child.  And she is Autistic.  So much so that she was unaware of her surroundings and non-verbal.  Witness reports indicated that she was simply walking along the highway and the witness called the police to help her.  She was confused and unresponsive.  The police claim she needed to be apprehended on the roof of the car and the taser was necessary to do so.  A docile, compliant girl needed to be tasered.  By TWO police officers.

Reports on the news continuously refer to her a woman.  She’s not a woman.  Her father has spoken out and clarified that she is indeed an 11 year old CHILD with Autism Spectrum Disorder that has the mental capacity of a three year old.  She’s not mentally ill.  She’s autistic.  She posed no danger to the police officers.  She simply did not comply because she didn’t understand.  It was as if she didn’t hear them, and whatever she did hear she didn’t understand.  That kind of happens when someone with ASD has what others consider the mental capacity of a three year old child.  She wouldn’t have understood the ramifications of not complying with complicated adult terminology.

I just… I keep thinking that these officers aren’t going to have a case at all in justifying their actions.

  • She was naked and had no means of defending herself.
  • She was naked and had no means of hiding weapons.
  • She was unarmed.
  • She did not level any threats at the police officers.
  • Her conduct did not present them with resistance.  She simply did not comply with orders to stop.
  • She was non-compliant, but in a way that wasn’t obstinate or violent.  She wasn’t rude or combative.  She simply behaved as if she didn’t hear them.  As the witness stated, she appeared confused, giggled, and just kept walking.
  • She was not facing the officer when he tasered her.  He tasered her in the back as she walked away.  IN THE BACK.  She was walking away from the officers, not rushing them.  Not even running away.
  • They didn’t attempt less intrusive methods to get her to stop ie. waiting for back-up to arrive; attempting other tactics.
  • Tasers are intended to diffuse dangerous situations.  What about this situation was dangerous for the officers?  A naked child walking along the highway? Or did they think that tasering her was for her own good? Apparently they did.  They claim it likely saved her life.

As a mother to a child that has Autism who is 10.5 years old… one who is a known wanderer… I find this situation excessive and terrifying.  My daughter appears not to have Autism as severe as the girl in this story, but no one really knows what led to that little girl being out there naked and alone and eloping.  My own daughter, nearly the same age, could very easily be in a similar situation where she’s walking with a destination in mind that only she is aware of and she doesn’t comply with whomever is talking to her.

But this hurts me as a mother to three daughters.  As a mother at all.  You just don’t. Tase. Children.  Common sense, yes?

Situations like this are why police officers MUST be trained on Autism Spectrum Disorders and other disabilities.  What if this had been a child or teen or adult that was deaf? Or had a cognitive delay? Or actually was mentally ill? What if it was simply a child that had been told to never talk to strangers, ever? This child was no threat to anyone.  She was victimized in the supposed effort to keep her from being a victim.

Did you know that when someone is tasered, it’s incredibly painful? Tasers produce an electric current which is incapacitating, causing the skeletal muscles to freeze.  Every muscle freezes at the same time, which means that you can’t move.  You can’t stand.  You fall, and you feel every single thing.  You can be injured during the fall if you hit your body and head on something, like a car or railing before hitting the ground.  You can be injured as you hit the ground on cement and rocks.  People have died from heart attacks caused by tasers.  Remember… the heart is a muscle too.  The prongs of the taser attach themselves to the skin, which causes localized pain.  The pain you feel during a taser attack is supposed to subside as soon as the current is off.  The aftereffects are supposed to be a brief feeling of unease, temporary unsteadiness on the feet, feeling dazed, temporary stinging, and temporary stress on the muscles.

That’s what happens to typical people.  People that don’t likely have Sensory Processing Disorder.  People that don’t have developmental delays and problems with social interactions and social cues.

I know that there’s going to be a vocal group that says,

“Well what were those officers supposed to do? The girl didn’t listen to them.  They had no way of knowing she has Autism.  They had no way of knowing she wasn’t older than 11 years old with the way kids mature so fast these days.  They had to make her comply.  When the police tell you to stop, you stop no matter what.  If you don’t then anything after that is on you and not them.  And by the way, where were the parents?”

Because there are always people like that.  I get the mentality.  Police officers enforce the law.  But discretion must be used and so must common sense.  And I don’t believe common sense was used in this case.

If you disagree with me, that’s fine.  But I ask that if you’re unfamiliar with Autism and/or have a tendency to automatically defend police actions, please read up on Autism Spectrum Disorder and Elopement.  You should also read up on Sensory Processing Disorder.  Read up on the statistics of police brutality against people who have disabilities.

I try to discuss Autism and the related issues we face here in my blog from a life perspective so that those who stumble on my blog can try to understand and maybe put the knowledge they glean here to use the next time they come across a particular situation in their own lives.  I already think that tasers shouldn’t be used because the complications that arise from them are ridiculous, and they’re not used with enough discretion.  I find them brutal and barbaric.  I find it ridiculous that anyone would find it proper to use on a minor child under any circumstances.

I think right about now is a good time for me to end this post, because I’d like to maintain my composure.  Please comment, though, even if you disagree with me.  Just be respectful.


Police taser 11-year-old autistic girl found wandering naked along highway – YouTube.

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I feel like I have an obligation to write about the tragedy of the Sandy Hook shooting.  I’m so overwhelmed that I’m not entirely sure where to start.  There’s not exactly a beginning… and I feel like some of the things I want to say will come off in a chastising manner.  I’m not really sure I’ll be able to temper that, to be honest.

I feel a responsibility to post because I live in Connecticut; because I have a seven year old daughter in elementary school; because I’m a mother; because I have strong feelings about this tragedy; because I have Generalized Anxiety Disorder and Depressive Disorder;  and unfortunately, because news outlets are reporting that the shooter “may have” had some mental health issues and then that’s immediately followed by “and Autism.” Then it’s clarified that it’s thought that he may have had Asperger’s Disorder, a type of Autism Spectrum Disorder.

I feel as if I can’t express and write about what I need to write about until I get rid of the giant pink elephant in the room: that the shooter may have had Autism Spectrum Disorder and also been mentally ill.  First and foremost, let me state in no uncertain terms that Autism is not a diagnosis of mental illness.  Can it be a co-morbid diagnosis or diagnoses with other neurological disorders and/or Depression Disorders and/or Mood Disorders and/or Oppositional Defiant Disorder and/or Bi-Polar and/or Schizophrenia and/or Psychosis and/or ADD/ADHD and/or OCD and/or Anxiety Disorder and/or other Psychological Disorders? Yes.  I’ve written about this before.  It’s very possible and very common.

Except that just like the great majority of neuro-typical people don’t go out and commit mass murder or murder their loved ones or commit crimes that land them jail, neither do people who have Autism Spectrum Disorder and comorbid diagnoses.

I have a child on the Autism  Spectrum.  She has many developmental delays, including social delays.  It’s often like raising a toddler or a preschooler, especially with her emotional level and impulse control.  She’s not inherently violent and she’s not a bad girl.  She’s sweet, charming, intelligent, funny, beautiful, shy, talented, artistic, and vibrant.  I couldn’t imagine my life without her.  That’s not to gloss over the difficulties of raising a special needs child who will be a special needs teenager, a special needs young adult, and a special needs adult.  I’ve often shared our difficulties here, so I won’t go into great detail again in this post.

Mainly, I don’t want to keep feeling as if I will be put into a position of having to defend my autistic daughter.  I don’t want to feel as if I’ll be put into a position of having to defend my parenting of her to people who have never met her and only know that she’s autistic.  I don’t want to have to worry that people who already know her to suddenly become wary of her or fear her simply because she has Autism.

If that young man were mentally ill or had Autism Spectrum Disorder or any other neurological Disorder, then I hope that people will be smart enough not to paint the rest of the community that shares that characteristic with the same brush.  Because I can guarantee that his having any particular neurological disorder is not what “caused” him to do what he did.  While I will not blame his mother’s parenting or even his parents’ divorce, I WILL say that this young man’s entire life had to  have led up to the decisions that he made.  His world must have been a very dark one whether he was mentally ill or not.   Whether he had Autism had nothing to do with it.

But I will say this one last time in this post: It has NOT been confirmed that the Sandy Hook shooter had mental illness nor Autism of any kind.  This is only based on the speculation of gossip and comments that were supposedly made to the police by the shooter’s brother whom he hadn’t seen in two years.

Maybe now I can move on with the business of mourning and processing.


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I’m “just a mom” to a sweet girl who happens to have Autism Spectrum Disorder.  That’s my connection to you, who Googled “I wish I didn’t have Asperger’s.”  My daughter is 9 years old and she has ASD.  I’m her mom, and I don’t have ASD.  I do my best to understand what I can and I hope that I’m doing her justice.  My response to you, dear “I wish I didn’t have Asperger’s” is as a mom.

It’s okay.

I hope it was only a fleeting emotion.  I hope that it isn’t something that consumes you.  I hope that one day it’s a part of you that you’re able to not only come to terms with, but accept.

My daughter may only be 9 years old but she has already said on more than one occasion that she wishes she didn’t have Autism.  She wishes her brain worked the right way.  She wishes her brain didn’t mess up her thoughts.  She wishes she were able to think like her sisters.  She wishes school weren’t so difficult.  She wishes the world didn’t make her feel “so much” because of her sensory problems.  She wishes she didn’t have so many worries or fears or anxieties.  Of course, she’s not quite so eloquent with her words, but I get her meaning.  Her difficult days, her impossible days, well… they’re impossible for all of us.  They’re not easy.  But when she smiles and her day is good, when her hours are good, the sun is shining no matter how hard it’s raining outside and all is right in the world.  I do whatever I can to see that smile.

I would love to take away the negatives for her too… but I love her as she is.  So I hope that as she grows, she feels that she can grow into the aspects of herself that are making her life more difficult.  I’m proud of her as she learns to cope with life’s curve balls.  I’m proud of her as she navigates not only her world, but a world that doesn’t think the same way she does.  A world that’s still woefully lacking in being supportive of those who are similar to her.


She’s sweet.  She’s creative.  She’s artistic.  She’s bright and charming and sees the world in a unique way that I appreciate when she decides to share it with me.  As difficult as the rest of it is, it would take away the pieces of her that make her Gracie if we took away her Autism.  Would she be so charming? So creative? Would her sense of humor be so dry, silly and amusing? Would her sense of style be so unique and varying? Would her written stories and her art work be so creative and well crafted? Would she be so caring? Would she be so persistent? Would she be so bonded with her sisters?  Would she have a love of the same subjects and objects and animals and colors? Would she be so vibrant in everything she does? Would she touch so many lives?

Would you?

No matter who you are, no matter what is part of your person-hood, you are loved and needed and wanted.  You are required and necessary in this world.  Don’t ever doubt it.  That includes your Autism, dear “I wish I didn’t have Asperger’s.”

Take the world by force.  Use your Asperger’s to your benefit.  You may have Asperger’s Disorder, but it doesn’t have you.  You are not Asperger’s, you have Asperger’s.  Become your own best advocate.  You have more support than you realize.

There’s an entire blog dedicated to you.  Please go visit it by clicking on the image below.

Click Here Please

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