Category: Creigh's Updates - Autism Spectrum Explained

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Congratulations, Caley!

1/15/2015

CALEY JUST GOT HER DRIVER'S LICENSE!!!!!!!!!!!!!!!!!!!!!!!!!!!!! The latest hurdle that people said she'd never been able to do - passed! It was really hard, and she had to combat a lot of anxiety along the way and do it on her own time table but...she did it! I am so happy for her right now.

I am very proud of her - not for getting her license, I would be proud of her with or without one. But what I'm proud of is how much hard work she did. She was so scared to drive. But she'd ask me to take her driving despite that. She was afraid to do the driving exam. But she did it anyways. It was so hard for her, yet she confronted her own fears and the doubts of others and pushed through at her own pace in her own way. I have a very, very brave sister. Love you, chica.

Moral of the story: Caley is awesome and never listen to what people say you can or cannot do.

-Creigh

Caley's Driving!

12/29/2014

It's been a long day, but before I went to bed, I wanted to share this with you guys (and pretty much the whole world, actually, I'm so bursting with pride). I am so INCREDIBLY proud of my sister right now. She confronted one of the most frightening things to her in the world today: driving.

Caley's been so incredibly scared to drive, particularly without me helping her, and some people said she never would (which when it comes to autistic people or any people, to paraphrase Jess, 'you should never say never unless it's to say you never know'). And today she did. Not for the first time, but for the first time in many years without me by her side, and on major roads to boot. She's doing this at her own pace, on her own timeline, and she is pushing towards her goals and I could not be more proud of her for that. You've got this, chica!!!!

-Creigh

My "Big" Sister

12/9/2014

So, I've been talking to some new friends lately, and several times now the reaction when I refer to Caley as my little sister has been to say, "Oh, I thought she was your big sister!" Now, that's not an uncommon reaction - plenty of people think that Caley's older than me when they meet us. I'd always chalked it up to the fact that Caley is the taller of the two of us (much to my regret - she loves teasing me and calling me her 'little sister'). But these people have never met Caley before, never even seen pictures of her, so that can't be the confusion. Why then, I wondered, did they think I was Caley's little sister?

And so I asked them. And you know what they told me? They told me it's so clear that I look up to Caley when I talk about her that they simply thought she was the older sibling.

And that is so very, very true. I really do look up to Caley, and I'm thrilled to hear it shows through when I talk about her. And you know what else? She looks up to me, in turn. We're each other's role models. I admire her so very, very much. And, yes, she inspires me. Not in an inspiration porn kind of way, but in admiration of her sheer spirit. Caley is tough. She is a strong adult woman. She has accomplished a ridiculous amount, all while pushing through artificial barriers and societal low expectations. And she's still fighting.

An hour ago, Caley texted me telling me she'd applied for graduation for this upcoming semester.

My sister is graduating college. And few people realize how much she FOUGHT tooth and nail for this degree, and she's about to get it. I am so very, very proud of her. Yeah, I do look up to her. And I always will.

I love you, 'big sister'.

-Creigh

I am not an Autism Professional

9/5/2014

I am not an Autism Professional

In fact, I’m not any kind of professional. Neither is Caley, for that matter.

Why am I telling you this? Well, for one thing, I’m worried you may get the wrong impression. Though that fact is literally written at the bottom of every page of our website, in the side bar on the blog, and the about section of the Facebook page…the truth is, many of you may never read those, not because they aren’t plastered everywhere I can put them, but many of you readers solely know us from Facebook and really, how many people actually read the About sections? (I’ll be the first to admit, I never do.)

But more than that, I’m telling you this because I had a sobering conversation with a professor/mentor/super awesome wise-advice-giving person who talked to me about…well, a lot of things, actually, but on the importance of caution when giving any kind of advice and on my responsibilities as a graduate student clinician, among many things. And it was a wake-up call that made me see the page in a new light, one I’m very grateful for.

When I first started blogging on the ASE Facebook page (and reposting the blog posts on the website), I never thought it would go anywhere. To the first couple of people who suggested making it, I scoffed. I said, who’d want to read what I’d have to write? And honestly, would I even have enough material to write about? Well, the answers to those questions have turned out to be almost 500 people (wow!), as of this posting, and material to spare.

I first started out with family and friends – basically all I did was take all the posts about autism and interesting links I was posting on my personal profile and start putting them here, and invited those friends and family who’d commented and liked them on my profile to like ASE and see them here instead. That’s really what it was initially, and I never really expected people not biased by family relationships or friendship to find it interesting.

But you guys did like it (you all are awesome!), and I’m so grateful for that, because I truly and deeply believe that the more people read posts presenting the autistic perspective, posts that promote understanding and acceptance, the better the world will be for people on the spectrum. And that really is what all of us are working towards. Yes, every single one of us, even those of you who never even met anyone autistic – because you do your own part to work towards that world with every post you read.

Yet with all of you (super amazing!) followers comes a lot of responsibility, and a lot of possibilities for misunderstanding. So I’m going to be very, VERY clear here: I am not a professional. I am not a doctor, not a lawyer, not a psychologist, not a behavior analyst, not a speech language pathologist. For that matter, as I’m in graduate school now, I’m not even a nanny any more. I am not any kind of professional. Any and all perspectives or advice I share come from personal experience and nothing more.

What is my background? Well, I've got a bachelor's degree in Psychology, completed a post-baccalaureate program in Communication Sciences and Disorders (CSD), and I'm currently studying for my Master's in CSD (which will lead to a career as a speech pathologist). Absolutely none of those, however, have given me an understanding of autism.

Instead, all of my understanding comes from learning from the many autistic people, children and adults alike, that I know virtually and in person. I am an elder sister to an amazingly awesome Autistic woman, my sister Caley. Simply being related to her taught me very little about autism (this isn’t the kind of thing that works by osmosis), but actively seeking out her opinion and learning from her has taught me so much. In addition, I’m almost certainly at least Broader Autism Phenotype (BAP) with a lot of anxiety, and all my autistic friends think I’m autistic. On that count, I honestly don’t know for sure, but what I do know is that I do connect on a personal level to the words and experiences of autistics more than most, and that this connection helps me to better understand and convey autistic experiences.

Being an active member of WrongPlanet, the discussion forum mainly for adults on the spectrum, has also taught me so much about many autistic people’s perspectives. And I got the caregiver perspective from being a former nanny and babysitter to children on the spectrum. I’m also a friend to people on and off the spectrum, and I’ll admit I connect much more quickly with those on it. Even my free time is spent actively seeking out and soaking up writings and videos from autistic people. And, yeah, I would put ‘autism’ under the special interests category for me, so I do a lot of seeking.

Sister. Friend. Caregiver. Broader Autism Phenotype. These are the perspectives I am writing from, and these areas are where any and all understanding I have comes from. Those things and those alone - all from personal experience and from learning from the personal experiences of others. So all that is to say that if you’re looking for professional advice, look elsewhere. But if you’re looking for the perspectives of a sister duo with a whole lot of autism-related experiences…well, you’ve come to the right place.

-Creigh

My Last Day

8/13/2014

I'm too emotionally drained at the moment to write more, but it was my last day with the kids I care for today. It went well, and the transition went amazingly and I know I'm leaving the kids in amazing hands, but saying goodbye was SO hard...

With every child I work with, my heart grows, an expansion from my love for them. But with every child I leave, a piece of my heart gets left behind, and it hurts.

-Creigh

Miss Creigh is Moving

8/5/2014

I spent the morning making a story that I never wanted to read - the one explaining that I'm leaving the child I care for. I'd tried explaining last week, saying that Miss Creigh was moving away to a 'far away land' (I tried to keep it fun), but - perhaps because of the abstraction - it wasn't clicking for him. So I made it visual, in a social story.

I spent hours working on this thing. Finding the exact right pictures to use. Making sure that he knew I loved him, even though I was leaving. Piecing together a picture of the map, including where the child lives and where I'm moving to, to make the abstract more concrete. Figuring out a coping mechanism to incorporate into the book that he could use if he missed me too much. (Looking at a picture of me and calling me.)

But despite all that work, when it was finally done I was scared to read it to him. What if he got upset? What if it wasn't the right time to say? I was extremely worried about it, to say the least.

Ultimately, though, I felt I couldn't put it off much longer, and, using the iPad as a bribe, got him to sit down with me and read the story.

Not only did he not react badly, which is what I was so, SO afraid of, he actually LIKED the story! I'd incorporated lots of cool pictures of us doing fun things together (in the introductory part of the book), and he loved going over them as I asked him questions to keep it interactive. (Q: "What are you pretending to be in this picture?" A: "A ghost!" Or, my favorite part, as I read the page with "Miss Creigh loves you!" he responded, "Love you!")

And he UNDERSTOOD. After we were done reading, I asked him some questions to ensure comprehension.

Q: "What's Miss Creigh doing?"
A: "New house!"

Q: "Is Miss Creigh's new house close or far away?"
A: "Far!"

Q: "Who is going to be your new nanny now?"
A: "That one!" [Pointing to the new nanny who was standing next to us.]

Q: "Is Miss Creigh going to visit?"
A: "Yes!"

He got it, you guys. I'll keep going over the story to ensure comprehension, and the new nanny and parents know where the book is, but HE GOT IT. Another reminder that we don't give kids on the spectrum the credit for understanding things that they deserve. And, whether because he actually did understand last week when I told him and just needed time to process, or because we'd already started transitioning in the new nanny who he loves, or the comfort of the story or whatever reason, he was okay with it.

This is better than my wildest dreams, you guys. I am so INCREDIBLY relieved right now. Leaving will still be hard, intensely so. But this makes it so much better.

-Creigh

Photo is of the first page of the story, appropriately titled "Miss Creigh is Moving." On it is a clipart picture of a little red Volkswagen towing a huge rolling box of belongings. It couldn't look any more unrealistic or different from my actual move - which required a U-Haul - if it tried, but hey, whatever works...

Transitioning

8/5/2014

The transition to a new caregiver for the children I'm leaving (including the child I was concerned about transitioning) is going really well! We did day one yesterday, and he kept saying, "Miss Creigh, alone time!" which I taught him to say as a more appropriate alternative to "Go away!" ...only, in this case it meant I should leave the room and the new caregiver should stay. It's been a better transition than my wildest dreams and I am so relieved. I don't know if being told to go away has ever made me happier!

That said, he doesn't know I'm leaving yet. I tried explaining last week and he didn't quite understand, so I'm making visual aids to help explain and a social story type thing to show him today that I'm moving and can only come back for holidays from now on. All in all, though, while I'm willing to extend later if It turns out we need to, I think we'll have made a smooth transition in just a week, instead of the two weeks I thought we might need.

So it looks like I'll be all moved up sooner than I thought! I have absolutely LOVED this chapter of my life. I love the children and families I've worked with here, I've LOVED spending time with my sister and my mom, and it's been great being so close to most of my extended family, too. I will dearly miss every single one of them. I spent this year well, getting my post-bacc in Communication Sciences and Disorders and caregiving experience with children on the spectrum. (Parents, I have infinitely more respect for all you do now!) But I'm ready to become a full-fledged autism professional now and I cannot wait to get the training as a speech pathologist that awaits me on the other side of my move.

-Creigh

Leaving is Hard

7/9/2014

When I picked the child I care for up from camp today, his camp counselor (and school speech therapist) said to me, "He's going to miss you when you leave."

I'm sure that was said as a compliment, to say that I've been a good caregiver. But the knowledge that he's going to miss me, that he's going to be confused and upset that I'm no longer there (I'm hoping that we'll do such a great transition that that won't be the case, but it's a very legitimate possibility)...it HURTS, you guys. I know I'm leaving to get more training to help autistic kids like him. I know that. But that doesn't make the knowledge that I might be hurting him by leaving hurt ME less.

On the positive side, today has been an absolutely AMAZING day. And that knowledge, the knowledge of how far we've come...that's the only thing that makes me feel a bit better.

Sorry for the down beat post you guys, I'll be back to up beat autism understanding posts later.

-Creigh

Autistic Support Group Announcement

6/14/2014

ASE is teaming up to start an online autistic support group!

Yes, you read that right. This is going to be an autistic support group, not an autism support group, which means it's going to be a space just for autistic adults. We're REALLY excited about this, although we can't claim credit for the idea - Colin, the soon-to-be founder of the support group came up with it and I still say it's one of the best ideas I've heard!

Getting to a local support group for autistic people is pretty rarely feasible - not only is transportation often an issue for people on the spectrum, but more than that, most support groups are set up for parents of autistic children, not autistic people themselves. An online support group means no matter where you live in the world, your transportation status you can still attend. More than that, the group will offer both typing and voice modalities (with the option of video), which should expand the people who can participate comfortably.

This is still a work in progress, in part because we want to shape the group to fit what participants are interested in. What we want to know now is, what would those of you who are autistic adults like to see out of the program? Let us know in the comment box or take our survey at the website. And neurotypical allies, please share with this those autistic adults that you know!

Interested in learning more about the group? Read our article with more about the group and check out Colin's introductory video!

-Creigh

On Our Autism Evolutions

6/9/2014

I was going back through the ASE website this morning, looking over an article that I probably wrote six months ago, and was taken aback by the kind of language I used and things I said.

WOW, you guys. My understanding, not only of autism but also of the Autistic perspective, has evolved so much in the past year. To take that one page for example, I had to go back and switch everything to identity first language, get rid of functioning labels, and completely eliminate some things I'd said about empathy - and that was just in one short article! I have little doubt that the rest of the website is in dire need of editing, too.

I knew I had grown in my understanding, but I had no idea how exponentially I had done so until I went back and looked back at the words of my past self. And I'm not the only one who has experienced this. Those of you whose were diagnosed or whose children were diagnosed a long time ago will understand what I'm talking about with this rapid growth of undersanding. If you go and look at the early blog posts of Ariane at Emma's Hope Book, or Jess at Diary of a Mom, or even The Thinking Person's Guide to Autism, you'll see a huge change between their thoughts then and now, as Ariane wrote a great post about. Those of you whose diagnosis experiences have been recent may be just starting on this curve. Believe us when we tell you, it is steep, but it is well worth traveling.

I will not deride my past self for having held mistaken beliefs. Two years ago, despite having grown up with an Autistic sister, I knew next to nothing about autism. Now, Caley and I run a Facebook page and website explaining autistic people. The growth I have gone through in that time is incredible, and I hope it never ceases, because I am always going to be willing to learn and the moment that we think we know everything there is to know about autism and have found "the one Truth" is the moment we cease to know much of anything at all.

-Creigh

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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