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Autism Spectrum Explained
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  • Home
  • Introduction to Autism
    • Characteristics
    • Common Myths
    • Tenets of Autism
  • How to Interact
    • What to Avoid
  • Negative Narrative
    • Autism Controversies
    • Stigma & Discrimination
  • Advice for Parents
    • Visual Supports
    • Autism Treatments
    • Explaining Autism to Kids
    • A Mother's Story
    • My Sibling Perspective
    • Autism Explained for Kids Site
  • All Kinds of Minds
    • Culture of Autism
    • Late Diagnosis
  • More
    • How to Assess Claims
    • What Causes Autism?
    • Additional Resources
    • Site Info & Feedback >
      • About the Website
      • ASE FAQ
      • Survey
      • Contact Us
      • Make a Submission
  • Our Blog
    • On Self-Advocacy
    • Trouble with Changes
    • Smoothing Transitions
    • Autism Speaks
    • Vaccines
    • Infantilization
    • Her Autism is Worsening
    • Stimming
  • Autism Tutoring

Supports for people on the spectrum are also Supports for Caregivers

12/14/2015

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In typical me fashion, I was sitting up late last night thinking about autism, pondering over the supports we use for people on the spectrum - sticker charts, visual schedules, etc. And then it occurred to me. These are as much tools to train caregivers to interact and understand someone on the spectrum as they are tools for the intended person.
​
I thought about each support one by one, and here I'm going to take you through how they can actually help caregivers as much as caregivees...

1. Sticker charts
These have been much decried in recent years as tools for people on the spectrum, due to concerns about extrinsic vs intrinsic motivation, among others. But one thing these do that we don't think about is they remind caregivers to look for positive things to reward.

Having that sticker chart is a reminder to look for the great things a child on the spectrum does, when the most salient things for caregivers of children (either on the spectrum or off) tend to be the bad. So I love the idea of using a sticker chart for the caregiver, to remind US to give praise throughout the day.

2. Visual schedules
Predictability is SO important for reducing anxiety in a person on the spectrum. And yet, our world doesn't tend to provide that. A visual schedule is a great way of not only giving a person on the spectrum a way to see what's happening next, but it's also a great way for us as caregivers to be held to that schedule.

When you don't have a schedule written down and given to the person on the spectrum, you are liable to deviate quite a bit without warning. If you have a visual schedule, it's a reminder that you need to change that schedule (and thereby give a warning to the person on the spectrum of the change) before you change your plans.

3. Timers
Similar to a visual schedule, a timer holds both the person on the spectrum AND the caregiver to a commitment in terms of the routine and transitions.

4. The 5-point scale
The five point scale is a way of communicating a state of emotional regulation. A 1, for instance, is fully regulated, whereas a 5 is extremely unregulated.

Right after I learned about this scale, Caley called me in the middle of a panic attack. Wanting to apply what I'd learned, I explained the five point scale and asked where she fell. She said she fell at a four, and defined a four as feeling "like I want to run in the closet and hide".

Yes, the scale was intended to support Caley, but it was a tool for me as her ally to remind me to ask her how she's feeling, and then better understand how that felt to her. I had no idea before that a "4" felt THAT bad to her. This tool, too, went two ways.
​
5. Functional behavior analysis
This is a tool held up as the foundation of changing a child's behavior. Essentially you figure out what happened first, what happened next, and what function that behavior served.

Yet, it can be used as an far better tool for ourselves. It's a constant reminder that behavior is communication. If a child screams and then the adult interacting with them goes away and they stop screaming, they might be saying "I'm overwhelmed." Biting might be a way of saying "pay attention to me". These analyses teach us to look for the underlying meaning in behaviors, rather than just brushing them off.

These are just some examples of the ways that these supports run both ways, but there are many more. What tools can you think of that run both ways?

-Creigh
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The Kindle Fire as an AAC Communication Device

11/27/2015

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Picture
One of the things that I have always appreciated about the Kindle Fire (which I am not affiliated with, but do, in fact, own) is that it's a very low cost access point for a communication device. It's only $50.
​
Quick Talk AAC, Speech Assistant AAC, LetMeTalk, TalkinPictures, TalkTablet, Gabby Tabs - you may not have heard of them, but these are all communication apps available for Kindle devices, most of which are FREE.
​

That means that, for the low price of $50, you can try out several AAC (Augmentative and Alternative Communication) apps for your child or yourself. What's more, there's now a way to unlock the Google Play store without rooting your Kindle, so that ANY AAC app available for Android will be able to work on your Kindle.

I don't know about you, but I think that's amazing. If you already have a communication device for your child, but want a more mobile one, or one you don't have to worry so much about breaking during high use situations (it's $50, so less stress), this is a GREAT addition.

What's more, devices can actually be really great for working on turn taking, visual schedules, and even spoken communication. I know when I nannied a child on the spectrum, one of the BEST communication activities I could do was watch Angry Birds videos with him on his iPad. I would ask him wh- questions about what was going on, he would also ask me questions about the characters, I would work with him on making inferences about what was going to happen next...the list goes on.

What matters is not so much the device itself, but what you do with it. And with a Kindle Fire you can do a LOT.
​
You can purchase one here:
http://www.amazon.com/…/B…/ref=s9_acsd_bw_dcd_odsbncat_c0_t…

And check out the AAC apps that come with the Kindle Fire store here: http://www.amazon.com/s/ref=nb_sb_noss…

And, if you'd prefer to use the AAC apps in the Google Play store (which are more varied than those in the Amazon store - top ones include Alexicom, Avaz, JABtalk, Sono Flex, Nova Chat, and more!), you can add the Google Play store to your device without rooting it by following the directions here:
http://www.geek.com/…/you-can-access-google-play-on-amazon…/

Have concerns about using a communication device with your child? Check out this article about them 
http://www.speakforyourself.org/…/myth-augmentative-altern…/

-Creigh
2 Comments

On Toothbrushing, Sensory Sensitivities, and Pain

10/30/2015

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As those of you who are caregivers for those who have sensory sensitivities (as most anyone on the spectrum does) or who have these sensitivities yourself know, toothbrushing can be a sensory NIGHTMARE! I'll let Caley explain how it feels:

"PAIN!"

That's all she said when I asked her to describe it and I think that's plenty. And flossing, she says, is even worse!

When she was younger, our parents were in charge and made sure her oral hygiene was kept up by making her brush her teeth.

However, now that she's an adult who can make her own decisions, Caley has declared that the pain of toothbrushing is not worth the benefits (which should tell you just how painful it is) and that we should try to find something to do instead.

Here's everything we've tried so far, including what's worked and what hasn't, so that those of you with similar difficulties can learn from our experimentation.

Attempt #1: No Burn Mouthwash
Caley vetoed regular mouthwash right away, for sensory reasons, but agreed to try "no burn" mouthwash instead. Apparently that's false advertising on their part because she took one mouthful and immediately had to spit out and rinse.

As Caley says "It BURNED!!!!! It was lies!"

As that didn't work, we tried a mouthwash that didn't have any alcohol in it whatsoever: Biotene mouthwash. Caley approved of the lack of the burn, so this product gets the thumbs up from her!
That said, mouthwash alone is no substitute for an actual toothbrush. So we kept looking...

Attempt #2: Water pic
We thought this might be able to help with actual plaque removal, unlike the mouthwash. At the same time, unlike toothbrushing the water didn't have painful bristles, which was a point in its favor.

Unfortunately, despite looking like a good product for sensory avoiders this didn't work out. Not only was the water pressure not enough to really get rid of all the plaque, but the machine itself was LOUD, which set off sensory sensitivities in a different way!

Points for effort, but this one ended up being a waste of money for her needs.

Attempt #3: Stimudent
These are little wooden picks that you use to get plaque off your teeth. These, unfortunately, didn't work out either, also for sensory reasons, as well as practical reasons.

Sensory wise, they made Caley's gums bleed. The taste of blood really bothers her, so that was already enough to make her not want to use them. On top of that, it takes a forever, in Caley's words, to fully clean your teeth with these. Practically, therefore, these didn't pan out either.

Attempt #4: Trident gum
This one met with approval! Trident gum helps (slightly) to mechanically dislodge food in the mouth, and an ingredient in it, xylitol, helps make the mouth a less pleasant environment for harmful bacteria. That's actually the same ingredient as they use in baby toothpaste!

​Again, like mouthwash, definitely not a replacement, but certainly helpful as part of a bigger oral hygiene plan.

Attempt #5: Oral swabs
These are basically little sponges attached to popsicle sticks. You can get them plain or, as we did, treated. Ours has dentrifice on it, which acts to scrub plaque away by abrasion, as toothpaste does.

They're easy to use, you just brush them around your mouth like a toothbrush. They're meant for people with disorders or health problems that make toothbrushing impossible - which certainly applied!

Caley tried them and deemed them a success! Not only did the sponge not cause pain, but it was also pretty much flavorless (despite saying they were mint flavored) - another point in favor for a sensory avoider!

We had a winner!

Conclusion:
Now, am I saying these solutions are as good as flossing and brushing? No, not by any means. However, they mean Caley doesn't have to be in pain anymore, and using all three of them together (Biotene mouthwash, trident gum, and the oral swabs) makes a halfway decent oral care program.

It was definitely worth it to respect Caley's needs and find something new instead of trying to force her to do something that wasn't working for her. Caley and I are sharing this story to help those of you with similar needs find something that works for you, too!

Let us know in the comments about any other sensory friendly oral hygiene products you know of, or if you've run into similar toothbrushing issues yourself!
​
-Creigh
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Idea for Head Banging

9/27/2015

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Picture is of a black mesh back support
So a while back I was working with a child on the spectrum who liked to bang his head, which is pretty common. It's generally a sensory seeking behavior...but it's pretty bad for your head!

I happened to have one of these mesh back supports in my car and on an instinct attached it to the head of the chair the child was banging his head on. He LOVED it! He was able to still move his head back and forth and meet resistance when he went back, without actually banging his head on something.

Since it's mesh and elastic, the material gives quite a bit, which protected his head as he banged it and made sure he never actually made contact with the chair itself. The nice thing is, they're also super inexpensive - you can get them off of Amazon for less than $5.http://www.amazon.com/Fellowes-Office-Suites-S…/…/B000MUSOZ6 (I'm not affiliated, just providing a link.)

Let me know what you guys think! As always, I'm not a professional, just writing from personal experience - it went well for this boy and I thought I'd share the idea with the rest of you! 

-Creigh
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Communication Placemat

9/15/2015

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Photo of a hand-drawn communication placemat. Silverware and plates are drawn in the center, surrounded by handwritten messages on the edge of the paper, such as
In my AAC (Augmentative and Alternative Communication) class today my professor mentioned a great idea - communication placemats for meal time! She said she'd used one at a pre-school she'd been at before, where communication placemats were made. She said they distributed them to all the children, speaking and non-speaking alike, both for normalization and so the speaking children could model how to use them for the non-speaking children.

I made mine with a camp I helped out for elementary school students in mind - I put meal related things on top, social-related on the right, and adult related on the left. But this would be great to adapt to your own personal needs, too! You can use picture symbols instead of words for non-readers and use vocabulary more common at home. If I had to go back, I'd add in "like", "dislike", "I", and "want" that way you can prompt for sentence production (ie the child can point to "I want food").
​

Let me know what you would do to yours! You can buy them online but I literally drew this one in five minutes in class and all you'd need to do is laminate it.
​
-Creigh
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A Story of Dysgraphia, Anxiety, and A Middle School Project

8/7/2015

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When we were in middle school, Caley and I were both required to draw maps. I mean, free hand draw a map of an entire continent, or a topographic map of Southeast Asia.

Caley and I got to talking about those maps this morning, and she revealed to me that at points she'd been thinking about breaking her arm so she wouldn't have to draw them. She was a MIDDLE SCHOOLER thinking about BREAKING HER OWN ARM.

And my family and I had no idea.
​
Sure, we knew that as someone with dysgraphia (common in people on the spectrum) writing hurt her - but we never realized it hurt her THAT much. And, yes, I personally knew how anxiety inducing those maps could be for those of a perfectionistic bend - I remember how painstakingly I drew the fjords of Norway and despaired over getting Crimea just right.

But I didn't know. I didn't realize just how bad it was for her.
​
I'll let Caley tell you the story in her own words:

"They were free hand-drawn maps. We'd do things like the 13 colonies, Europe and Australia. Europe was the worst. You had to draw the coastline and then map within five miles the different cities. And you had to color it in and make it pretty and it did matter how it looked. That's one of the few C's I got in middle school.
​
It hurt a lot because of my dysgraphia and then it extremely stressed me. I remember hurting myself throwing my pencil up in the air in frustration. The first map I didn't think of it. The second and third maps I definitely thought about breaking my own arm. Because it HURT to write that map. And it was SO stressful. I don't think my meds were really good back then so, along with going through puberty, everything just combined together.
​
I don't know how to describe it, it just hurts to write. I can do a little bit, but because of the way I have to bend my fingers so that I can have any kind of fine motor control over the pencil it becomes REALLY painful.

I don't think I ever told [other people] it hurt. Although it should have been fairly obvious by how I acted. I often shook my hand out, although that looked like stimming, and I hated writing. Typing was a lot better.
​
I think they did the maps to attract those into art into learning, but it kind of was punishing to everyone who didn't."

I don't know if there's one single lesson to this story.

Maybe how painful dysgraphia can be?

Or how bad anxiety can get?

The importance of teaching self-advocacy?

Or the way that these moments of anxiety can just go under the radar, because we don't realize JUST HOW BAD it is for the person?

​The need for accommodations?

​The way an assignment can be so frustrating that a child is thinking about hurting themselves to get out of it?

In the end, I think this story tells all of those and more.

​-Creigh
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“Her Autism Is Getting Worse”: Perceptions Can Be Misleading

4/19/2015

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Picture is a speech bubble that read:
Reading my previous post, I realized how easy it would be, were Caley less able to communicate what was going on and our family less familiar with autism, to get the idea that her autism was ‘getting worse’. Naturally, this phrase is problematic in of itself. Namely, autism is inseparable from Caley, just the same way that being female is, and she doesn’t view being autistic as a bad thing. As a result, the entire phrase just doesn’t work.

But in our hypothetical scenario, in which, say, a parent of a newly diagnosed non-speaking child was viewing these same changes, I realize that it’s easy to get the wrong impression and think someone can get ‘more’ and ‘less’ autistic. Today, I’m going to clear that up.

For some background for those unfamiliar with Caley’s situation, lately she has been having more autism-related difficulties. She has a stronger need than usual for predictability – she needs routines and plans to remain unchanged right now, and if they are changed it’s highly distressing for her. She has greater sensory needs than usual, as well. Recently, Caley began biting at her wrists, due to sensory needs, too, so we bought her some chewelry (in this case, a chewable bracelet) to help her address that urge without hurting herself.

Caley’s also more sensitive to sensory sensations than usual. As a result, all the usual restaurants that we used to eat at are out of the question – now we have to eat the table furthest away from any other patrons in a quiet Japanese sushi restaurant. And having earplugs on hand is a must. She has greater difficulty coping with shopping trips, and more trouble functioning in daily life, whether it’s preparing food for herself or getting to class. In short, her functioning level at the moment is significantly below where it usually is (although, of course, it fluctuates day to day and moment to moment).

With all this as background, it’s easy to see how someone less familiar with autism might mistake these changes as coming from her autism itself changing. The reality, however, is far different from that. Caley is just as autistic as she has always been. The difference, however, lies in her coping abilities. Ordinarily, Caley can blend pretty well with neurotypicals. But doing all the neurotypical-seeming things – dealing with changes in routine without showing the strain, coping with sensory input, etc – take energy. (See ‘the spoon metaphor’ for more on this.) And the instant that Caley gets sick, or is dealing with depression, etc, the energy she normally uses to help her deal with the neurotypical world is used instead for dealing with this new problem.

Here's Caley's explanation:

"Since I’m having to deal with other things, the energy I normally use to deal with things like making sure I seem neurotypical-ish and cope with sensory things is diverted. The supposed “bad things” about being autistic get emphasized more."

Without the energy to devote to blending, Caley’s autistic characteristics seem to strengthen. But, again, that’s not a change in her autistic-ness – it’s a change in the energy she can devote to blending in.

I hope this helps explain some of the fluctuations in ability levels you may see in people on the spectrum and the reason behind them. Let us know what you think!

-Creigh

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Reader Q&A: It's okay to be sad sometimes

4/1/2015

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I had a reader email me yesterday and, with her permission, I'd like to share our exchange with you all, because I feel like this is a common feeling parents can run into - guilt about feeling different about your child's future.

READER:
So I was at the park with my son yesterday, and a young man and his little brother arrived. My son was playing with some "typical" kids, all was going pretty well. He was playing with the young man and the little brother also. The kids he was playing with left on their bike and scooter, and my son got very upset thinking they were leaving/cheating/trying to get away from him fast - he didn't "get" that they were going home, though once he calmed a bit, he understood and was ok.

A little while later, the young man came over to talk, and asked if my son was autistic. I said yes, mostly shows up socially.

I noticed I felt sad, though - and then I felt bad for feeling sad - like I was betraying my advocacy for feeing sad. A strange spiral of feelings. I think the sad comes from me wanting things to not be hard for him, and knowing that although he's just himself to me, that the stuff that I find charming and just "him" is stuff that might separate him and set him up for difficulty/bullying/whatever.

Sigh. Am I awful, does this make any sense? Do moms go through this, even activisty-moms?

MY REPLY:
It makes complete sense, you're not even the slightest bit awful, and all moms - and other caregivers, like me - go through that. I've had those same feelings. And you know what? That's okay. Accepting your child for who they are doesn't mean that you have to be cheerful about everything that comes along with that, especially when that something is bad. And knowing your child is going to have a tough time at some points? That's a tough thing to deal with. I've been there myself, when I was nannying, and I get it.

Your experience actually reminded me of one of mine. My post was about something different - it was about feeling gratitude, rather than sorrow - but there's a common theme. We both had this idea that accepting someone on the spectrum for who they are should mean that we feel the same emotions regarding them as for neurotypical children. But their reality is different, when you look at societal treatment, and it's okay to recognize that. Here's the post, let me know if you relate:http://www.autismspectrumexplained.com/…/on-society-gratitu…

Creigh

READER'S REPLY:
Thanks! That helps a lot.

It is kind of sucky to think that we end up cheering because "yay, somebody's not a complete jerk!" Woohoo. tongue emoticon

Totally relate - I don't even want to think about middle and high school. Hopefully he'll find his geek-crowd - having the other slightly-off-kilter people as my social group was a life-saver. If you can't fit in, at least not fitting in with others that don't fit works smile emoticon

MY REPLY:
Actually, when you embrace how you don't fit in and embrace yourself for who you are, your quirkiness can actually add to your popularity. I know a lot of spectrum-y people who are popular for that very reason.

This is where you can come in and help, by raising your son to love himself for who he is. And you're doing a great job of that. smile emoticon



I hope this exchange helped any of you who were having similar feelings. Feel free to comment with your thoughts and questions below!

-Creigh

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Books about autism for kids...and a freebie for adults!

1/25/2015

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Okay, so after hours of searching online for good books about autism for kids, I have finally spent my Books A Million money! Since it took me so VERY long to find books that I felt comfortable with kids reading about autism. Why did it take so long? Because the books had to be: 
-Accurate
-Promote or at least not deteriorate self esteem
-Apply to all autistic kids, either by acknowledging that everyone's different or by talking about very general characteristics
-Not scare kids. You'd think I wouldn't need this category, but I read a book for kids that tells them that POISON might cause their autism. Which is just ridiculous on so many levels.


After all that I came up with the following list. If you're looking for books to help you explain autism to your kids, I really recommend these!

1. Different Like Me: My Book of Autism Heroes
- It gives kids autistic role models to look up to. Enough said.

2. Ian's Walk 
- Okay, so I mostly got this one because it came recommended by sources I trust. It's about a sibling's perspective of their autistic brother. I'll let you know more after I get it.

3. Autism Is...?
- A short, sweet picture book in which a grandma explains autism to her grandchild. Self esteem affirming, and basic enough that it applies to most kids. This is good for younger children. I've already given out one copy to a family, so I'm buying another for my lending library. 


4. Can I Tell You About Autism?
- You know, out of all the books, this one did the best job I found of actually explaining how being autistic can affect kids in a kid-friendly way. It's a picture book, but more detailed and advanced than Autism Is...? and it's got a parent's section in the back, too. I wish it had more sections focusing on the strengths of autism (which is why I would couple it with Different Like Me if I was presenting it to kids), but overall it's a great book. 

I'm going to add a fifth story to this list, one which I didn't buy because it's available for free on line. It's called "Movement." It might be good for older readers and adults, and it is one of the most powerful reads. I highly recommend, it's a great exercise in empathy.

http://www.nancyfulda.com/movement-a-short-story-about-auti…


Tell me what you think of the books!

-Creigh

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On Books that Spread Fear

1/23/2015

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I am sitting here on the floor of Books A Million right now. I was fortunate enough to get a gift card this Christmas for them, and I've come here to spend it buying, you guessed it, books about autism. I was excited when I saw they had two whole shelves devoted to the subject. But I was horrified when I realized some of the books they contained.

You see, the treasures of books like Carley's Voice and The Way I See It, by Temple Grandin, are overwhelmed by a large quantity of very untrue and harmful books. "The Myth of Autism" one reads, proclaiming in large letters on its cover to tell readers "how a misunderstood epidemic is destroying our children". Another, seemingly innocuously titled book "The Autism Book" claims to tell parents about treatment, recovery, and intervention. Inside it endorses chelation and tells parents (in the same sentence as it says there is no scientific evidence backing this) not to vaccinate their children. Those are only two examples, but there are many, many more sitting on these shelves (did I mention Jenny McCarthy's book is here, too?).

And I can't help thinking to myself, some parent, likely scared after diagnosis, is going to come in here looking for answers. And this is what they're going to find. And I'm helpless to stop it.

If you know a parent of a newly diagnosed child, please, please reach out to them. Loan them your own autism books, tell them about the autism Facebook pages you follow, the websites you know. If you're not sure where to refer them, send them to the Autism Spectrum Explained resources page, which has more resources than they could ever need. Because if we don't, this is what they and their child may well be met with. And that, to me, is horrifying. Too many families have gone through this already - if our efforts can help keep even one from this, it will be worth it.

Creigh

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    About Creigh

    I'm a college student who grew up with my Autistic younger sister, Caley. I've got a bachelor's degree in Psychology and I'm currently studying for my Master's in Speech Language Pathology.

    Neither of those, however, have given me an understanding of autism. All of my understanding comes from learning from the many autistic people that I know. As a result, I have a very different outlook on autism than most, and a burning desire to tell the world what I've learned. This blog is one of the many areas in which I attempt to do that.


    *Note, none of these make me a professional, so advice I give is not professional advice.

    Top Posts

    On Self-Advocacy
    Difficulty with Changes 
    On Parental Guilt
    Transition Time!
    My Autism Speaks Story
    A Tale of Two Sensitivities
    Autism and Haircuts
    Cause of Autism
    Vaccines and Autism
    Happiness's Variations
    I Cannot Call Caley Cute
    The Power of Listening
    Her Autism is Worse
    On Preventing Bullying
    Autistic Parenthood
    Facing Discrimination
    Stimming's Function
    On Anxiety

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    Blog Info

    Starting about in March 2014, all of these posts are originally published on Autism Spectrum Explained's Facebook page, and later reposted here for archiving purposes and easy access for ASE readers, including those who don't use Facebook. 

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Disclaimer: The author of this website is a  speech therapist, NOT a psychologist, and frequently writes based on personal experience. As a result, advice given here may not be completely accurate and may not apply to everyone. The author readily admits to having a lot left to learn. In addition, most of this website was written before the author became a speech therapist and is thus not written from a professional perspective. This website should not be used in place of a professional. The author is not responsible for the content of other websites for which links have been provided, nor content from other contributors.
Published: 3/09/2013
Last Updated: 11/14/2017
Photos used under Creative Commons from madmiked, Jim Larrison, Purple Sherbet Photography