Some service dog programs make me sad

There is a service dog program here in Kansas. There are actually two. I have met demo dogs from one, but not any actual service dogs. The demo dogs of said program were mannerly and well trained. I have not met demo dogs from the other organization, but this past week I did meet one of their actual trained (I use that term loosely) service dogs.

I will not reveal the name of said program, but if you would really, really want to know, email me and I'll consider it.

Anyway, a friend of mine was saying a couple weeks ago that she saw said program's dogs in a mall on their last day of team training, and they were a mess. One dog pooped in the mall, others just didn't have good manners. Many were tied to small children. She stopped and talked to someone, and was telling them about her SDiT (that she did not take to the mall...since here in Kansas non-program trainers don't have access rights). She mentioned some things her puppy is trained to do, and the other person was amazed. When she asked that person what their dog did, they answered "I don't know yet" and mentioned that they were taking their public access test and would be going home the next day.

Well, okay. Second hand account, maybe things weren't as they seem. I'll give them the benefit of the doubt.

Then this past week, a woman comes in to the clinic with a service dog she got from said program. She got home a week and a half before, and started team training 3 weeks before. She was telling me how her dog has peed/pooped on her dining room floor every day, won't listen to her when she tells her to relieve herself outside, won't get up in the morning, and generally just doesn't listen. From my own observations, the dog was sniffing EVERYTHING and did not listen very well - and NEVER responded on the first command. Now, this dog did have a gorgeous heel, I'll give her that much. But that was about it. She had an ear infection and did NOT like any part of the exam. I understand not wanting her ears messed with, but she wasn't tolerating anything very well. At least she wasn't aggressive. This poor woman was SO frustrated. She really just wanted help, and instead she has a dog that she pretty much has top train herself. She told me the dog knows 60 commands, but they didn't tell her what all those 60 commands were. She also is not trained to perform the tasks that this woman was specifically wanting to mitigate her disability. The dog was also very thin - not just working-condition thin, but count-every-rib and back-and-hip-bones jutting-out thin. The dog is just over a year and a half old.

Now, I've heard rumors that said program is a piece of shit before. However I also had one person tell me they were awesome, and I should get a dog from them because they'd give me one and they're cheap. Apparently you get what you pay for, though. To think I actually considered a dog from this program! I'm so happy I decided to owner-train instead. Honestly Logan is already more trained than that dog that came in, from what I saw.

I really hope this woman gets the issues sorted out. I told her to contact the program first and let them know she's having problems, and then I gave her the number for a private trainer to try instead if the program ccan't/won't help. She deserves better than what she got.

Welcome Home Logan!

Logan and I made it safely home this past Sunday after a wonderful weekend "back home" in Washington. I have decided that I do want to move back to Washington, hopefully within the next year.




I'm keeping a separate blog for Logan and his training so this one doesn't get clogged. It can be found at http://blog.spectrumassistancedogs.com/

Now, for the details on the flight and stuff. I have never flown before, and it actually wasn't too bad. I have to admit I had the biggest grin on my face the first time we took off ;) I flow on Frontier, and they were great. I got a gate pass for my dad when he took me to the airport, and another gate pass for the breeder when she took Logan and I to the airport to come home. They were very understanding about me needing help finding where I need to go. Security wasn't an issue. I wasn't selected for a pat down or a bag check, just the standard xray/metal detector stuff. I also requested Meet and Assist at the Denver airport to switch planes, since I have a dreadful sense of direction. Turns out I didn't end up needing it, but they were willing if I needed it. When I landed in Denver on the way to Seattle I arrive at gate A24, and needed to be at gate A26 in 2 1/2ish hours. I get out, turn around, and see that gate A26 is right next to A24. Yeah, I think it got it form here ;) So I spent the layover exploring the airport and eating lunch. Since I got such a long time to figure out how the airport is laid out, I was fine with the layover in Denver on the way back, and found the gate on my own. When I arrived in Seattle the breeder and her friend and her friend's service dog picked me up. I didn't have much trouble finding them, as it's rather difficult to miss a borzoi in baggage claim ;)

The flight itself had some sensory things, but nothing terrible. The people I sat next to were friendly or just ignored me, which was great. The flight from Denver to Seattle was a little hot, but it was all right. On all the flights soft drinks were free. The flight from Seattle to Denver was very dry, and I had a sore throat/dry eyes/dry mouth. I also slept for a short time on that plane (it was an Airbus, while the other three were Embraers, which are much smaller). There was noise, but it was humming/white noise so it wasn't a problem. The biggest problem was the air pressure. I can feel the change in pressure in elevators and highways, so it's no surprise the pressure changes were annoying in flight. Gum, ice cubes and yawning took care of that though.

The airline also took very good care of my dog. They gave me a little note each time we got on a plane assuring me he made it safely aboard. I really appreciated that, and it eased my anxiety at least a little bit. I would definitely recommend Frontier/Midwest to anyone who has to fly a pet.

Autism Awareness Month Post-a-Thon #7: Acceptance

In honor of Autism Awareness Month I have decided to do a post-a-thon. Each day for 1 week there will be a new post. Hooray! Today is Part 7: Acceptance.

NOTE: Small FAIL here. I planned on publishing this one last Sunday, but forgot. So here is part 7, a little late :P

Acceptance is what the neurodiversity movement is all about. So, it's wonderful to find someone who's truly accepting.

My roommate, for all her flaws, is probably the one person that accepts me as I am. That doesn't me she knows 100% of the real me, but we're getting there. I have not told her about the service dog yet, but that, too, will come when it is time. (She does know I'm getting a new dog and it will be trained to the level of a service dog, she just doesn't know it will be MY service dog yet. He actually is my "homework" for Bergin U, too).

When I first told her that I was autistic, it was shortly after we became coworkers and changes our majors to psychology and started taking classes together. I told her as we passes the building that that was where I had been diagnosed. She acknowledged it, but I didn't think she'd give it a second thought. Much to my surprise, and delight, she actually took it in, ruminated, and decided that it was fine.

She sometimes asks me questions about how I think or why I do things the way I do. Then one day when we were volunteering at the zoo together, she told the keeper that I was autistic. It actually came up conversation. See, I had been wanting to tell this keeper for a while, but hadn't. My now-roommate brought it up as if it was the most natural thing in the world. It was awesome.

After a while she told her boyfriend. Apparently he, too, is accepting of it, and even said that it explains a lot. It's nice to hear others say it explains a lot.

More recently, she told our boss, who I also think is on the spectrum, that I am autistic. It, too, came up in conversation. He seemed to take it in stride. I had been wanting to tell him since before I was diagnosed, but didn't know how. Her bringing it up was great. I think it really extends understanding between all of us.

Usually, when I make a friend, I assume that there will be a day that I will lose contact with them. It may be in a couple months, it may be in a few years, but I always assume that eventually we will drift apart. I really can't see us drifting apart. She is my best friend. I have had best friends before, but never like this. It's always been so superficial. She even said recently that I am her best friend, which has never happened before.

To top it all off, we're living together. I never thought I'd be able to live with anyone, but when offered a chance to live in a house with a yard for the same price as my tiny, no-pets studio apartment, I couldn't pass it up. I convinced her to move in, and it's been great. I have had a roommate before, for a short time, and it was awful. Maybe I just had a terrible roommate and it left a bad taste in my mouth. But, having a roommate has actually seemed to help me a great deal. I eat more regularly, I am more structured, and my house is cleaner.

Autism Awareness Month Post-a-Thon #6: The DSM-V

In honor of Autism Awareness Month I have decided to do a post-a-thon. Each day for 1 week there will be a new post. Hooray! Today is Part 6: The DSM-V.

The DSM-V is set to come out in 2013, and there are some major changes going into it. We're just going to look at the changes that are planned for the autism section.

First, it is proposed that Asperger's and PDD-NOS be combined with autistic disorder, and together renamed "Autism Spectrum Disorder." I personally am all for this change. I think that it'll not only help get services for those of us that are higher functioning (but still in need of help), but it also is, after all, one of the goals of the neurodiversity movement - to show that Asperger's, PDD-NOS and Autism are all the same thing.

In the current DSV-IV, the following are the criteria for Asperger's, PDD-NOS and Autistic Disorder (from dsm5.org ):

Asperger’s Disorder
A. Qualitative impairment in social interaction, as manifested by at least two of the following:
(1) marked impairment in the use of multiple nonverbal behaviors such as eye-to-eye gaze, facial expression, body postures, and gestures to regulate social interaction
(2) failure to develop peer relationships appropriate to developmental level
(3) a lack of spontaneous seeking to share enjoyment, interests, or achievements with other people (e.g., by a lack of showing, bringing, or pointing out objects of interest to other people)
(4) lack of social or emotional reciprocity
B. Restricted repetitive and stereotyped patterns of behavior, interests, and activities, as manifested by at least one of the following:
(1) encompassing preoccupation with one or more stereotyped and restricted patterns of interest that is abnormal either in intensity or focus
(2) apparently inflexible adherence to specific, nonfunctional routines or rituals
(3) stereotyped and repetitive motor mannerisms (e.g., hand or finger flapping or twisting, or complex whole-body movements)
(4) persistent preoccupation with parts of objects
C. The disturbance causes clinically significant impairment in social, occupational, or other important areas of functioning.
D. There is no clinically significant general delay in language (e.g., single words used by age 2 years, communicative phrases used by age 3 years).
E. There is no clinically significant delay in cognitive development or in the development of age-appropriate self-help skills, adaptive behavior (other than in social interaction), and curiosity about the environment in childhood.
F. Criteria are not met for another specific Pervasive Developmental Disorder or Schizophrenia.

Pervasive Developmental Disorder Not Otherwise Specified (Including Atypical Autism)
This category should be used when there is a severe and pervasive impairment in the development of reciprocal social interaction associated with impairment in either verbal or nonverbal communication skills or with the presence of stereotyped behavior, interests, and activities, but the criteria are not met for a specific Pervasive Developmental Disorder, Schizophrenia, Schizotypal Personality Disorder, or Avoidant Personality Disorder. For example, this category includes “atypical autism”—presentations that do not meet the criteria for Autistic Disorder because of late age at onset, atypical symptomatology, or subthreshold symptomatology, or all of these.

Autistic Disorder
A. A total of six (or more) items from (1), (2), and (3), with at least two from (1), and one each from (2) and (3):
(1) qualitative impairment in social interaction, as manifested by at least two of the following:
(a) marked impairment in the use of multiple nonverbal behaviors such as eye-to-eye gaze, facial expression, body postures, and gestures to regulate social interaction
(b) failure to develop peer relationships appropriate to developmental level
(c) a lack of spontaneous seeking to share enjoyment, interests, or achievements with other people (e.g., by a lack of showing, bringing, or pointing out objects of interest)
(d) lack of social or emotional reciprocity
(2) qualitative impairments in communication as manifested by at least one of the following:
(a) delay in, or total lack of, the development of spoken language (not accompanied by an attempt to compensate through alternative modes of communication such as gesture or mime)
(b) in individuals with adequate speech, marked impairment in the ability to initiate or sustain a conversation with others
(c) stereotyped and repetitive use of language or idiosyncratic language
(d) lack of varied, spontaneous make-believe play or social imitative play appropriate to developmental level
(3) restricted repetitive and stereotyped patterns of behavior, interests, and activities, as manifested by at least one of the following:
(a) encompassing preoccupation with one or more stereotyped and restricted patterns of interest that is abnormal either in intensity or focus
(b) apparently inflexible adherence to specific, nonfunctional routines or rituals
(c) stereotyped and repetitive motor mannerisms (e.g., hand or finger flapping or twisting, or complex whole body movements)
(d) persistent preoccupation with parts of objects
B. Delays or abnormal functioning in at least one of the following areas, with onset prior to age 3 years: (1) social interaction, (2) language as used in social communication, or (3) symbolic or imaginative play.
C. The disturbance is not better accounted for by Rett’s Disorder or Childhood Disintegrative Disorder.

And, here is the proposed revision for Autism Spectrum Disorder (also from dsm5.org ):

Autism Spectrum Disorder
Must meet criteria 1, 2, and 3:

1. Clinically significant, persistent deficits in social communication and interactions, as manifest by all of the following:
a. Marked deficits in nonverbal and verbal communication used for social interaction:
b. Lack of social reciprocity;
c. Failure to develop and maintain peer relationships appropriate to developmental level
2. Restricted, repetitive patterns of behavior, interests, and activities, as manifested by at least TWO of the following:
a. Stereotyped motor or verbal behaviors, or unusual sensory behaviors
b. Excessive adherence to routines and ritualized patterns of behavior
c. Restricted, fixated interests
3. Symptoms must be present in early childhood (but may not become fully manifest until social demands exceed limited capacities)

If you'd like to read the official DSM-V rational for the changes, you can read it here: Proposed Revisions - Rationale

Here's my take on the actual proposed criteria. Some people claim that those that are diagnosed with Asperger's right now may not meet the Autism Spectrum criteria. I think that this will only really be the case if they are misdiagnosed as having Asperger's right now. I think the DSM-V criteria are quite good. So let's take it apart, keeping in mind to be diagnosed with Autism Spectrum Disorder, one must meet all 3 criteria:

1. Clinically significant, persistent deficits in social communication and interactions, as manifest by all of the following:
a. Marked deficits in nonverbal and verbal communication used for social interaction:
b. Lack of social reciprocity;
c. Failure to develop and maintain peer relationships appropriate to developmental level

A change from this is that one must show ALL of the above symptoms. A lot of people think that they don't meet them all, when really they do, they just don't see that they do (which is why diagnosis is left to professionals). Let's take criterion A, first. I do display this trait - there are times I can't speak, even if I really want to, or can't find the words to say what I want. I also have issues with nonverbal communication (as explained in an earlier post this week). Now for b: I perhaps struggle with this on e the most out of a, b and c combined, simply because I hate sometimes coming off as rude when really I just don't "get" it. Take the dog show for example - I tried very hard to try to congratulate others and wish them good luck, because I knew ahead of time that that was expected of me. But, even then, there were a lot of case when I failed to do that. I was also often caught off guard and didn't know how to respond to someone else congratulating me or wishing me good luck. Now, out of a, b and c, the one that I have the hardest time seeing in myself is C. Not because I have lots of friends, but because it hurts a little to see what others have and what I lack. I like to think that having on friend is sufficient - and in my case, it probably is - but it's not developmentally typical to have one friend when you're 22 and in college. This is obvious when I see my roommate going out with other friends all the time, bringing other friends over, etc. I have one true friend. I get along with my coworkers for the most part, but they're not really friends. Add to that that my one friend I am only friends with because she forced herself on me and wouldn't give up (and we not only live together but also work together and have classes together). I don't make friends unless they force themselves on me, and it takes a special person to realize that they need to do that. So yes, C fits me well, although I don't like to admit it.

2. Restricted, repetitive patterns of behavior, interests, and activities, as manifested by at least TWO of the following:
a. Stereotyped motor or verbal behaviors, or unusual sensory behaviors
b. Excessive adherence to routines and ritualized patterns of behavior
c. Restricted, fixated interests

To meet this criteria, you only have to show two of the "mini-criteria". I definitely fit A and C, and to a lesser extent, B, so that qualifies me. A: I flap, I rock; those are stereotyped motor behaviors. But, I also stim using echolalia, press my eyes to see patterns, and cover my ears or alkternate covering them to hear what it sounds like in a different way. I also smell everything. Then there are the sensory processing issues I have. Now, for B, I show this to a small degree (or at least to me it's a small degree) by wanting even sensation on symmetrical parts of my body (for example, if I scratch one arm I need to scratch the other), and I count by 3s, eat by 3s, and read by 3s. To me that's not "excessive" though. Now, for C, I definitely fit that one. My narrow range of interest changes now and then, but it's always been narrow. It used to be horses. Now it's dogs and ASDs. Every person on the spectrum I have met has had this narrow range of interests.

3. Symptoms must be present in early childhood (but may not become fully manifest until social demands exceed limited capacities)

Now the kicker. This is where a lot of people diagnosed with Asperger's claim they don't fit in anymore. In reality, they have been displaying these things all their lives, they've just either not recognized them (or their parents didn't recognize them), or they weren't as severe in the past as they are now - and this is okay, as stated by "but may not become fully manifest until social demands exceed limited capacities." I always say I was not disabled until I moved out and started living on my own. That is when social demands exceeded my limited capacities. Sure, I showed symptoms before. Even my mom, who was so resistant initially, tells me all the time about things I did in childhood that seemed "strange" but in retrospect were all a part of my autism. For example, every night when I was a kid I needed to be covered with my "army blanket" and then my "invisible blanket." My army blanket was tangible, and my mom knew I was attached to it (sadly, it was lost when we moved from Washington to Kansas...I still would like a replacement). But the "invisible blanket" was between my dad and I, and to this day my mom doesn't get it. It was a huge comfort to me when I was a kid, though, and thus my dad always had to tuck me in at night so he could cover me with the invisible blanket. Then there is the incessant watching of "Winnie the Pooh and the Honey Tree" about 5 million times when I was a kid. Fixated interests much? ;) Even friendships were difficult for me, although I never knew it until I was in middle school and realized that the people I thought were my friends weren't my friends at all.


So, to me, the new proposed criteria are excellent, and they should be passed. I received a request to vote them down (I don't remember where or when), but instead I think they are great and should definitely be put in the DSM-V.

Autism Awareness Month Post-a-Thon #5: Spoon Theory

In honor of Autism Awareness Month I have decided to do a post-a-thon. Each day for 1 week there will be a new post. Hooray! Today is Part 5: Spoon Theory

I was going to give a long explanation of what spoon theory is. Instead, I'll refer you to the original "spoon theory" and then I'll elaborate and explain how it applies to autism, at least in my case.

So, first read this: The Spoon Theory written by Christine Miserandino/

Here's my interpretation. Let's say I start with 3 sensory spoons. Theses spoons can be replenished after recovery from a shutdown, but not before. And it takes longer to recover them if I actually go into shutdown than if I realize I'm close to the edge and try to recover before I go over it. If I am exposed to loud noise, that uses a spoon. Add on something bright or hard to look at, and that takes another spoon for vision. Add in trying to talk to someone, and that takes away the third spoon. At this point, I'm out of spoons. If another sensory event happens - say, unwanted and unannounced touch, that's it - it's shutdown time. By the time I have used 2 spoons, I'm on the verge of shutdown. If I can recognize that, and I do have specific tells, then great, I can get myself out and potentially get a spoon back. Thing is, I don't always notice me tells until I've used the 3rd spoon, if at all. So I often end up spending that 4th spoon that I don't have, and it all falls apart. Sometimes I can keep pushing myself and borrow a 4th spoon from the future, but that means next time (after I recover form the inevitable shutdown), I'll be that much closer to shutdown. For me tells include stereotypical motor movements (flapping my arms, for example, or jiggling my leg), irritability, and headache. Usually by the time I have a headache I've already used all 3 spoons, though...and that's most often the time I notice.

Spoons can be used up for other things too. Say in a given day I have 9 non-sensory spoons to use (in addition to the sensory spoons). Loss of these spoons will result in a meltdown or, depending on how they are used, a shutdown (or a combination of the two). I use one to drive to work, two or three while at work, and another one to drive home (work or school, that is, depending on the day). So in any given day I use 4 or 5 spoons just for work/school. If I have night class, that takes away another spoon on two (depending on the drive home - idiots with high beam head lights take away a spoon, despite my sunglasses). So at this point we're up to 7 spoons. Homework takes one, as does socializing. This means if I have night class, I typically have to choose one or the other. If I don't have night class, I can have more leeway. If there is some sort of drama in the course of the day - say an argument or a family emergency - that uses a spoon. Sometimes those little dramas can take ALL the remaining spoons and leave me screwed for the rest of the night.

As you can see, the more I run into in a given day, the more likely I am to go into shutdown or meltdown, or both. Lately meltdowns have been few and far between. There was a time that meltdowns were an everyday occurrence. However, it's common to have a shutdown every day, sometimes multiple times a day, and at the very least every other day.

Autism Awareness Month Post-a-Thon #4: You don't look/act/sound autistic/disabled

In honor of Autism Awareness Month I have decided to do a post-a-thon. Each day for 1 week there will be a new post. Hooray! Today is Part 4: You don't look/act/sound autistic/disabled.

When I come "out" to someone for the first time, the response is typically one of two things: "That explains a lot," or "You don't seems autistic." Typically, the former of the two responses comes from people I actually know and have interacted with a lot. The latter comes from your random person off the street that I meet.

Example: I recently went to an Asperger's meetup here in town. Apparently it was primarily for parents, but there were a few of us there that were actually on the spectrum (it was a HUGE FAIL though). When I was asked why I was there, and told them that I am on the spectrum, the general consensus was "Wow, I never would have known." The truth is, no, if you don't know me, you probably won't notice. Autism doesn't have a "look." Neither do many other disabilities. What does Schizophrenia look like? Blindness? Deafness? Cancer? Diabetes? Heart disease?

The simple fact is, disabled doesn't "look" or act any particular way. Many, many disabilities are invisible. A lot of times, those of us with invisible disabilities are made ot feel somehow that our disability is imaginary or insignificant. It may seem like that to outsiders, but to those of us that are disabled, it is significant, and it affects us every day of our lives.

As of right now, most people don't know I'm disabled until I come out to them. That will change when I get my service dog because it's obvious that there's something "wrong" with me if I have a service dog (mind you, "wrong" is just for lack of a better word; I'm me, as I am, and I'd never want it to be any other way. I don't see myself as being defective, just different.) With those I know well, even those that realize that I am autistic and accept it (ie my roommate) can't see that I am disabled. This is because they don't see me at my worst- they see me at my best and at my okay, but not my worst. I'm assuming that my roommate/friend/colleague/classmate will eventually see the "disabled me," it'll just be a matter of time. Those that have seen me at my worst have a greater understanding of how I function, and how my functioning can change at the drop of a hat. I can be doing great one minute, and then the next minute be pushed into sensory shutdown. It's just the way my nervous system works.

It seems, sometimes, that the general public thinks it is a compliment to say that a disabled person doesn't look/act disabled. I can appreciate that reasoning, but I also think it's important to look at the other side. A lot of us with invisible disabilities are trying to come to terms with it ourselves, and a lot of us don't feel "disabled enough" to deserve help, even when we desperately need it. Being told that you don't look or act disabled can make one think that maybe they really aren't disabled, and thus not deserving of help at all. It can also make one feel invalidated. Then there are people who are obviously disabled, but are still told they don't look disabled. For example, a blind person. Sure, they can get around great, but it's taken a lot of hard work to get to that point. A comment such as "You don't look disabled" can be taken as a condescending remark instead of a compliment.

The worst time to be told you don't seem disabled is when you're barely functioning. A comment such as that can push a shutdown into a full blown meltdown (recap: as I define them, shutdown is purely sensory, meltdown has emotions involved as well). I may look fine on the outside but be struggling to do whatever it is that I'm doing, and barely making it work. Just because I'm walking through Walmart doesn't mean I know how to get out of Walmart, back to my car, or even to the checkout, or can make it home without needing to take a break once I do find my car.

So, although typically the comment "You don't seem autistic" (or something to that effect) is meant well, it's probably something that is best avoided (take heart, though - generally it is understood that it is not meant as an insult, so don't feel too terrible about having said something similar to someone in the past). If you get to know someone well enough, you will eventually see it all.

Autism Awareness Month Post-a-Thon #3: I am Not a Puzzle, I am a Person

In honor of Autism Awareness Month I have decided to do a post-a-thon. Each day for 1 week there will be a new post. Hooray! Today is Part 3: the puzzle piece and the spectrum.



The puzzle piece is the traditional symbol of autism, and yet it is offensive to many of us that are actually autistic. The puzzle piece is associated with Autism Speaks, which adds insult to injury. The puzzle piece insinuates that we are not whole people, but rather parts of a whole person that need to be put together, or "solved."

The puzzle piece also symbolizes the need to fix or cure us. Of course there are some autistics that want to be cured, but the vast majority DON'T want a cure. Realistically, the only cure that would be feasible would be eugenic in nature. I hope that before this ever happens, people realize how dangerous it is to eliminate a gene entirely from the gene pool. Genetic diversity is very important. In theory though, if someone who is autistic now were to be "cured," they wouldn't be the same person. Everything we have learned, everything we have experienced, we have done as an autistic person. To take away that part of us is to take away who we are.

The spectrum, or "rainbow," is a much more acceptable, inoffensive symbol of autism. It symbolizes diversity. It is not the symbol of despair and brokenness that the puzzle piece has come to be. The spectrum shows that we are all different, not just in our disabilities, but in our abilities as well. Though we are different from anyone else, we ARE people, too. Whole people.