Saturday, August 27, 2016

21 Days of AAC: Week 2

View week 1 here.

I haven't done as well this week as the first week, mostly because our whole family, myself included, have come down with some sort of flu. In addition, one task had to be adapted and proved so difficult that I split it up into two tasks, because I don't have good data tracking for my AAC app. (Data tracking is available for Cough Drop, but you have to not be using it for free to access it, and their site was having issues that made me unable to pay them.)

Task 11 - Order at a restaurant with AAC
This one had several challenges for me. First, an acquaintance of my Mom's was having supper with us, and she commented several times that I was being weird. Secondly, I was overloaded by sounds from the bar, and third, in my overload, I forgot and spoke about wanting a quiet area. But when it came time to order, the waitress didn't bat an eye when I held out my device and pressed the sentence bar to ask for “chocolate milk and garlic shrimp skewers”. She also reacted very nicely when I thanked her and said it was good. Apart from repeating my words to check understanding (it was noisy and my speaker isn't very strong) her behavior wasn't noticeably different from if I'd spoken with my voice. I insisted on my parents giving her a good tip!

Task 12 - Express a goal for the future with AAC
Used AAC to tell Mom about my decision to start the Positive Neurodiversity blog.

Task 13 - Ask someone something about themselves that you don't know using AAC
Dad was talking about a David & Goliath TV show that Mom hates because Goliath (who is a dog) guilt-trips David. He speculated that Goliath might be reminding him of his Mom. I asked “when you were a child did your Mom talk about something you haven't done to make you feel bad?” He said no, but she had a litany of things his father had promised to do and never done, going years back. For example, he said he'd build her a bomb shelter and never got around to it. She'd bring out this list whenever she was upset with him.

Task 14a - Figure out three most commonly used words
My device doesn't have tracking, so I was struggling with this. I finally used the quotes in this record to count the most commonly used words in this past week. The top 5 were to, I, the, horse and work. I couldn't find synonyms for I or the, so I came up with the list toward, steed and task.

Task 14b - Use each synonym three times during the day
First, I said “after this can we go towards the 7-11” to my Dad, and then to myself I said “I ride my trusty steed” (added trust, said trust+e for trusty), and then “I am doing the AAC task for today”. A little later I jokingly asked Dad “do you like your machine steed” (car), which he didn't understand at all.
Just after lunch my brother was playing World of Warcraft and I asked him “what steed are you using?” He wasn't using a steed (I'd thought I heard him mount up, but I hadn't) but he did have a cool new hunter pet.
Randomly said “I am working toward a better world”. Then, while watching Voyager, I commented about a character “he must do this task by himself”. Just realized now that I forgot to the third phrase with 'task' in it!

The task that had the most practical difficulties was task 14, which I split into two pieces, and still forgot a little bit of it! However, the one that represented the biggest challenge to my AAC use was ordering at a restaurant. I'm still very much uncomfortable with using AAC to talk to strangers, even though I've considered having a wordless week at some point in the future to raise awareness.
But despite my personal anxiety, the restaurant meal went surprisingly well. The waitress didn't seem to even notice that I'd spoken to her once and used AAC the rest of the time. There are of course people who actually need AAC who could've acted that way, too - in my recent survey, I found 25% of adult autistics reported losing expressive language, and the noise level in that restaurant would be a plausible trigger.
However, I'm guessing many people in the general public don't understand that, any more than they understand part-time wheelchair use. I wonder if she just didn't notice, or if she knows more about part-time AAC users than most people do, or if she guessed that I didn't really need AAC but just didn't care. Whatever she thought, her reaction was much better than the lady in task #1 - she didn't change her behavior at all when talking to me as opposed to everyone else. Really the only thing I noticed that seemed different about her reaction to me was that she repeated back my order and not the others, and that was a purely practical reaction to my quiet speakers in a noisy environment. In every other way, she treated me like a typical customer.

Sunday, August 21, 2016

Positive Neurodiversity Compendium

I decided to start another blog, Positive Neurodiversity Compendium. This blog will be reserved as a safe space for neuroatypical people who just need to read something positive about people like them, without any mention of ableism.

As an autistic person, sometimes I feel like I'm drowning in the negativity around neurodevelopmental differences. Even most neurodiversity sites aren't a good thing for me in that mood, because rebutting ableism, while important, just reminds me of the ableism that is out there. This blog is intended as a safe space for people with neurodevelopmental differences who just need to read some positive stuff about being different.

I will still use this blog for the usual style of posts here, but when I write or come across something really positive and comforting, I'll put it there. Hopefully eventually I'll have a big long list of posts, so if you're like me, you can go delving into the archives to find some comforting stuff you haven't read yet.

I'm also intending this blog partly as something for kids to read. While I won't go out of my way to make it kid-friendly, it'll probably turn out as a good site to find stuff for a neuroatypical kid to boost their self-esteem.

Hopefully this will also be helpful to me, encouraging me to take the time to look for the stuff that makes me feel good about myself and the world.

Friday, August 19, 2016

21 Days of AAC - Week 1

This is part 1 of a series. Part 2 is available here.

Recently, Dana Nieder at Uncommon Sense posted a 21 days of AAC modelling challenge. (Actually a reboot of a challenge she's done before.) Then the Speak for Yourself blog posted a version of the challenge for adult AAC users to try for themselves.
I don't really fit into either box. I'm an adult who doesn't actually need AAC, and I don't have an AAC user in my life. I'm learning AAC so I can model for someone who doesn't actually exist yet - I want my future child to be exposed to AAC from birth. If xe has no speech issues, it'll be useful for awhile when xe is still too young to communicate easily. If xe inherits autism from me, though, xe could have trouble communicating through speech, and I want xim to learn AAC before I can tell if xe needs it. I also think AAC could help with learning to read, based on Maya's reading lessons, and I've been pondering throwing in AAC modelling as an adjunct to learning to read (especially sight words).
But anyway, I liked the structure of the adult AAC challenge, and decided to do it myself. I'll be posting updates once a week for my progress on this.
Task 1 - Use AAC in a place you've never used it before.
Used AAC for first time to talk to stranger, no speech. Tried to purchase a snack at a store I'd never been to, but my card didn't work so I gave up. Fairly minor use, but still a challenge. Only said one thing: "I would like to buy this" and managed the rest nonverbally because I felt too embarrassed to search for words in front of her. I think she thought I was Deaf because she enunciated very clearly and waited for me to look at her before speaking. Also seemed to give more detailed instructions on how to use ATM device than she would have if I was speaking. My heart was pounding, I felt scared and excited, and had a weird feeling like my words were stuck in my throat. I also felt like I was channelling Emmett from Switched at Birth, the way he acts with hearing people who can't sign.
Task 2 - Listen to music and say the first few words with my AAC device
This one was fairly easy. My auditory processing issues were a bigger hindrance than my AAC skills to this. I didn't really notice before how much I miss lyrics if I'm not reading them or listening to the same song over and over. I added two words - ignore and spit.
Task 3 - Use AAC to talk to someone who has never seen me use my device
I was wracking my brain to think of what to do, in part because I basically already did this for task 1. As I was trying to decide if I should go buy stuff from another store, the phone rang with a number I didn't recognize. I answered and said “hello” with the device, and they hung up on me. It feels too easy to leave it at just that, but I'll take it.
Task 4 - Tell someone something they don't know about me using my device.
I was wracking my brain all task thinking of what to say. The biggest problem is that I tend to be super honest, so it's hard to think of something I could tell my family that they don't know, and I wasn't expecting to see anyone else. I was about to give up and go on to the next task, but then an autistic acquaintance came over uninvited and I realized that I hadn't explained my AAC device to her. I used my device to say “I am learning to use this board so I can teach my child when I have one” with the device, and she didn't bat an eye. I explained more with my voice, and she compared it to using educational apps like the ones on LeapFrog. (I worked in task #3 here, too.)
Task 5 - Open a book to a random page and say a random sentence with my AAC device
Opened up Going Solo While Raising Children With Disabilities. Said “When my son was born, I decided to get off the road to get some balance, and I gave up a lucrative weekly income”. Added “income” and “lucrative”.
Task 6 - Summarize a movie with AAC
Watched Heavy Horsepower on Netflix and said with my device: “The movie was about big strong working horses. The man had two young horses who needed to learn to work, so he brought them to a man who teaches horses. While they were learning he went to different places to see how the horses there worked. At the end his horses knew how to work and he knew what to do to make them work.”
Task 7 - Ask someone to tell me about their day, then teach them how to say it on my device
Tried this with my Mom, but she adamantly refused to let me teach her how to say “not too bad” on the device. She kept saying she was too tired, and I was getting frustrated - it's only three words! Is that really so hard? My Dad intervened and asked me to teach him instead, so I did that, but I still feel upset that Mom refused. Ended up having a meltdown about it, but then Mom convinced me that she doesn't mean 'no’ forever, and encouraged me to ask again another time.
Task 8 - Take pictures of three signs and say them with device
A street sign, a stop sign and a sign for the name of an apartment building. I hadn't ever said 'third’ before on the device, but turns out I do have that word. Only one I didn't have is a building name that isn't worth adding.
Task 9 - Think of something I'd like someone to do to make it easier for me to use my device
I took a screenshot saying “I would like to teach you to use this” to my Mom. Then, with some help from me, she said “I want to drink coffee because I am old”. (Her choice of words, not mine!)

Task 10 (on same day as 9) - Watch something and add/open three new words
Watched nature documentary and added “chimpanzee”, “teen” and “elite”.
Thoughts so far:
I started off with a very tough task for me. I'm actually kind of shy (despite being an active-but-odd autistic chatterbox) and using AAC in front of a stranger was very challenging for me. However, in some ways the other interactive tasks were even harder. With a stranger, I felt no need to explain myself. With my parents, the fear of rejection is very tough. And with someone who's never seen me use the device, I chose someone who knows me and knows I can talk, so I felt compelled to explain why I was using an AAC device with them.
I also feel very mixed feelings about the acquaintance I mentioned. She is very accepting of strange behavior, probably because she's quite strange herself. She's also somewhat of a mentor to me in autism, because she's an older autistic woman. However, she's not very good at noticing boundaries and I'm not good at setting boundaries clearly enough for her, so sometimes I end up wanting to avoid her so I don't get pulled into an interaction I can't deal with. In particular, she often shows up at our house unannounced at 10-11pm, wanting to chat, and that's too late at night for me. She also calls a lot, and unexpected phone calls stress me out a bit. I know I need to figure out a way to improve my communication with her. I'm just not sure how.
I was also surprised by the depth of my desire for someone to share the AAC device with. For most of my interests, I'm happy to just be able to chatter at them about it. But I've been really wanting someone in my family to actually use AAC with me. I'll have to do more thinking to really unpack why.

Friday, August 12, 2016

Whose Autism Is It?

I've long been annoyed at two quirks of language by some non-autistic parents of autistic kids - insisting that autistic people should be called "people with autism", and calling themselves "autism parents". Both, independently, are problematic for reasons too long to get into here.

But just recently, I thought about both of those language quirks together. Particularly, the strange fact that the same non-autistic parents who call themselves "autism parents" also tend to insist that their children are "children with autism".

People tend to use adjective-first language for descriptors that they feel are important to their identity, in my impression. If you look at non-disability descriptors, I call myself a white person, a woman, a university student, a psychologist-in-training, a creative person, an aspiring author, an asexual person, a daughter, a sister, and someday I will hopefully be a mother. All of those are descriptors that refer to aspects of my identity. In contrast, I tend to say that I have blond hair and blue eyes. Although I'm not offended if you call me a 'blond' or a 'blue-eyed person', I don't insist on that language, because my hair and eye color are not important to my identity.

So these "autism parents" clearly feel that their child's autism is important to their identity. Yet they don't think it's important to their child's identity. Why?

While reading an unpleasant blog by one "autism parent" (which I don't want to link to, because that means I'd have to look at it again), I realized something. This person acted like his son's autism belonged to him. By which I mean that his discussions of autism were focused entirely on how it feels to interact with an autistic child. Any discussion of his child's emotions tended to be couched in behavioral descriptions, such as meltdowns, rather than actual description of emotions. His reactions to descriptions of autism, too, seemed based on the assumption that those descriptions were meant to reflect how parents felt, not how autistic people felt.

Ever since my first significant encounter with a 'low functioning' autistic person, when I was 15, I've always wondered how anyone can know these kids well and really see the 'horror story' that autism awareness campaigns portray. Because, yeah, they were severely disabled, but they were fundamentally just kids. They played, smiled, showed affection, communicated preferences, all of that stuff. They just did it differently. I could see how a brief encounter could give you the 'horror story' impression, especially in the wrong situation, but how could someone who looked after one of these kids every day see them like that?

At around the same time, I found a website, which I can't find right now. It featured Amanda Baggs, and started with a classic 'autism awareness' style message describing her in the third person and showing how disabled she was. Then, halfway through, it switched tones, showing the exact same pictures with a positive description and explanation and challenging the stereotypes people apply to that kind of picture.

What floored me was that after all of that, at the very end, there was one of those old 'signbook' things websites used to have, and some of the commenters there still didn't get it. One guy in particular commented about a picture of Amanda lining things up and saying she found lining up objects calming, and said that "you can't say it's not sad to see her like that". Even though she wasn't sad at all in that scene, and basically nothing about that scene was sad.

This has always puzzled me. I can understanding misreading someone, but even when the person expressly said that she wasn't sad, this person saw her situation as sad. How does that work? Maybe it's because they weren't talking about the autistic person at all. They were talking about how her presence made them feel sad.

It seems to me that people like this feel like autism doesn't belong to the autistic person. How the autistic person experiences their own autism is essentially irrelevant to them. What matters is the impact that the autistic person has on everyone around them - an impact that they assume must always be negative. Of course, expectations breed reality. If you think your life has to be awful, it will be awful, because your actions will make it so.

Friday, August 05, 2016

Autism in Adults: A Survey - Part 7: Independent Living

This is part 7 of a series on a survey I did in 2012. To get background information, go to part 1. To read an analysis of executive dysfunction in the sample, go to part 2. To read an analysis of alexithymia in autism, go to part 3. To read an analysis of the results from a new questionnaire assessing reaction to eye contact, go to part 4, and to read an analysis of a new questionnaire about autism internal experience, go to part 5. Lastly, to read an analysis of a qualitative description of functional language impairments in this sample, go to part 6.

In this part, I will discuss my sample's functioning in the area of independent living. I assessed this in two ways - with a qualitative question asking if the person did or could live independently (defined as needing no more assistance than a non-disabled person of the same age), and with an adapted form of the Casey Life Skills Assessment, a tool for assessing independent living skills in youth aging out of foster care.

On the qualitative question, 65.9% of my sample either were currently living independently or felt that they were definitely capable of living independently, 12.2% were uncertain or felt they could life semi-independently, and 22% reported that they were definitely not capable of living independently.

Individuals who considered themselves capable of living independently were less likely to have expressive (r = .318, p = .045) or receptive (r = .392, p = .012) speech problems. AQ, Reaction to Eye Contact factors and FrSBe were not correlated with general impression of independent living ability.

There was a significant correlation between age and self-assessed independent living ability, with 40% of 17-24 year olds, 16.7% of 25-35 year olds and 8.3% of 36-60 year olds not being able to live independently. (An additional 13.3% of 17-24 year olds, 16.7% of 25-35 year olds and none of the 36-60 year olds were uncertain if they could live independently.) Independent living did not differ by gender.

The modified CLSA was scored on a 1-5 scale, with higher scores indicating more independence. The scores of each item were averaged to produce a final score between 1-5.

The average total score was 3.64+/-.595, with a range from 2.58-4.86. There were a couple questions that were US-specific, and may not be appropriate for an international sample, so I also re-calculated excluding those questions, but the results did not differ significantly for any analysis. Therefore, I will only discuss results including those questions. Although I don't have normative results to compare against my sample, the total score was significantly lower than the maximum possible score of 5.00, suggesting that most of my sample had difficulty with at least some of the areas assessed.

The 14 individuals who described themselves as capable of living independently and had CLSA total scores scored significantly higher on the CLSA ( p = .037), with an average score of 3.86+/-.652. In comparison, the 7 individuals who were uncertain or couldn't live independently had an average of 3.27+/-.317.  As with self-assessed independence, CLSA total was positively correlated with age (r = .552, p = .006), although a three-way ANOVA by age category fell short of significance (p = .064). Sex was not significantly correlated with CLSA, but race was, with the 3 non-white subjects scoring poorer than the white participants (p = .018).

The CLSA total was also significantly negatively correlated with Autism Internal Experience factor 1 (r = -.588, p = .003) and factor 2 (r = -.482, p = .017). This suggested that individuals with poorer independent living skills tended to be highly visual thinkers with poor verbal thinking and form vivid mental impressions of sensory experiences.

It was also negatively correlated with Reaction to Eye Contact factor 1 (r = -.591, p = .001), suggesting that individuals with poorer independent living skills tended to find eye contact unpleasant and disruptive to functioning and feel pressured to make more eye contact than they were comfortable with. REC factor 2 was also negatively correlated (r = -.522) but since only 8 individuals had scores for both CLSA total and REC factor 2, it's difficult to know how reliable this result is. CLSA total was also negatively correlated with number of REC 'unsure' items, suggesting that low scorers were more likely to say they were unsure if an REC item applied to them.

Receptive speech was also significantly correlated with CLSA total (r = -.450, p .031), although sample size was poor. The three individuals with receptive speech problems and CLSA scores had an average score of 2.95+/-.273, while those with adequate receptive speech (n = 20) had an average score of 3.75+/-.577.

In addition, CLSA total scores were significantly negatively correlated with FrSBe total (r = -.730, p < .001), as well as all three FrSBe subscales (apathy r = -.751, p < .001; disinhibition r = -.470, p = .020; and executive dysfunction r = -.641, p = .001). This indicated a strong connection between frontal lobe functioning and independent living skills. TAS external was also negatively correlated with CLSA total (r = -.430, p = .036), suggesting that an externally oriented focus was associated with poorer independent living skills.

The CLSA comes with several subscales, representing theoretically distinct aspects of independent living ability. It's important to note that these scores are not completely independent, because some items were scored under multiple subscales. All subscales had average scores significantly lower than 5.00.

The permanency scale, which includes items 20, 38, 39, 47, 55, 58, 59, 60, 61, 77 and 78, assesses social support and connection to family, and had an average score of 3.84+/-.937, with a range of 1.42-5.00.

The daily living scale, which includes items 85, 86, 87, 88, 89, 90, 91, 92, 93, 94, 95, 96, 98 and 99, assesses practical everyday self-care, and had an average of 4.10+/-.439, with a range of 3.27-5.00.

The self-care scale, which includes items 68, 69, 70, 71, 72, 73, 74, 75, 76, 77, 78, 79, 80, 81, 82, 83 and 84, assesses mainly response to emergencies and health-related self-care, and had an average of 3.79+/-.549, with a range of 2.69-4.94. Scores on this scale were correlated with general impression of independent living (p = .045), with individuals who could live independently scoring an average of 3.92+/-.602 as opposed to 3.53+/-.378 for the 'no'/'maybe' group.

Specific items that differed across independent living groups on this scale included caring for own injury or illness (item 84, p = .020), making own appointments (item 82, p = .034), having a place to go if they feel unsafe (item 72, p = .022) and knowing how to get benefits (item 76, p = .012). With the exception of knowing how to get benefits, the average score for the independent living group was 4.04-4.56 ('yes' to 'mostly yes') and the non-independent group scored an average of 3.08-3.85 ('somewhat' to 'mostly yes') across the other three items. How to get benefits was rated lower for both groups, with the independent group scoring an average of 3.15+/-1.262 ('somewhat' to 'mostly yes'), and the the non-independent group scoring 2.08+/-1.038 ('mostly no'). This indicates that ironically, the group more likely to need benefits would also have more difficulty getting them without another person's assistance.

The relationships and communication scale, which includes items 52, 53, 54, 55, 56, 57, 58, 59, 60, 61, 62, 63, 64, 65, 66 and 67, assesses self-esteem, social skills and ability to engage in healthy loving relationships, and had an average of 3.76+/-.595, with a range of 2.50-4.94. This scale also significantly differed by independent living status (p = .046), with 23 independent individuals scoring an average of 3.93+/-.571 and 12 non-independent individuals scoring an average of 3.50+/-.619.

No individual items in this subscale had significantly different means across groups, but three had greater variance in the non-independent group: knowing a potential grandparent/aunt/uncle for children or future children (item 58, p = .001), ability to show others that they care (item 52, p = .036) and thinking about how one's choices impact others (item 54, p = .001). Since there was a ceiling effect, this variance is likely due to lower-scoring individuals being more common in the non-independent group, but this fell short of producing a significant difference in mean scores.

The housing and money management scale, which includes items 32, 33, 34, 35, 36, 37, 38, 39, 40, 41, 42, 43, 44, 45, 46, 47, 48, 49, 50 and 51, assesses ability to manage money, pay bills, and maintain a stable housing situation. On this scale, my sample scored an average of 3.52+/-.851, with a range of 1.55-5.00. This scale showed the strongest differences by independent living status (p = .001), with an average of 3.86+/-.802 for the 24 independent individuals as opposed to 2.87+/-.632 for the 12 non-independent individuals.

As expected given how strongly this scale differed, many items were significantly affected by independent living status. The independent group earned higher scores on knowing the advantages and disadvantages of check cashing services and payday loans (item 45, p = .003), keeping records of income and bills (item 36, p = .040), knowing how to get ID and driver's license (item 34, p = .004), knowing how interest works on loans (item 51, p = .031), knowing how to rent an apartment (item 42, p = .029), knowing how to get emergency help paying for utilities (item 41, p = .004), knowing what happens if they break their rental lease (item 40, p = .044), ability to find safe affordable housing (item 44, p = .001), knowing the costs of moving (item 43, p = .035), planning for monthly expenses (item 37, p = .011) and knowing the costs of owning a car (item 33, p = .042).

Independent individuals scored 3.78-4.19 ('somewhat' to 'mostly yes') on most of the items that differed across groups, with the non-independent individuals scoring 1.69-2.92 ('no' to 'mostly no') on those items. Two items had lower scores - keeping records of income and bills and knowing how to get help paying for utilities. Independent individuals scored 3.30+/-1.295 on recording income and bills (compared with 2.31+/-1.548 for the non-independent group) and 2.85+/-1.460 (compared with 1.58+/-.996) on knowing how to get emergency help paying for utilities.

In addition, non-independent individuals showed more variance in knowing someone to live with if they needed (item 39, p = .001), understanding disadvantages of credit cards (item 50, p = .023), knowing what happens if they break a rental lease (p = .001), knowing the importance of a good credit score (item 49, p = .001), using online banking (item 46, p = .007) and  knowing costs of moving (p = .017). They showed less variance in knowing how to get emergency help in paying utilities (p = .048). These differences in variance were likely due to ceiling and floor effects, since the items with more variance in the non-independent group had independent group scores close to 5 (and non-independent group scores ranging from 2.62-4.15), and the one item with less variance in the non-independent group had scores close to 1 in that group.

The work and study life scale, which includes items 14, 15, 16, 17, 18, 19, 20, 21, 22, 23, 24, 25, 26, 27, 28, 29, 30 and 31, assesses ability to handle a job or education, and had an average of 3.51+/-.839, with a range of 1.33-4.89. This is the scale that included the US-specific items. Although removing those items raised the maximum score to 5.00, it did not significantly change the mean score. Both the standard and non_US versions of this scale correlated significantly with independent living status (p = .037-.049), with the standard version resulting in an average of 3.78+/-.864 for the 20 independent individuals and 3.12+/-.676 for the non-independent individuals.

Three items differed significantly by independent living group. Independent individuals were more likely to know what employee benefits were (item 26, p = .019), be able to get help with an income tax form (item 21, p = .045) and be able to fill out a W4 exemption (item 27, p = .007). The independent group's scores ranged from 3.37-3.78 ('somewhat' to 'mostly yes') while the non-independent group's scores ranged from 2.00-2.69 ('mostly no' to 'somewhat').

Two items showed different variances - knowing what harassment and discrimination are had less variance in the non-independent group (item 25, p = .016) while having someone who cared how they were doing at work had more variance (item 20, p = .012). In both cases, this appeared to be due to ceiling effects - surprisingly, the non-independent group appeared to be more likely to understand harassment and discrimination.

The career and education planning scale, which includes items 8, 9, 10, 11, 12 and 13, assesses plans for career and educational advancement, and had an average of 3.12, with a range of 1.50-5.00.

Lastly, the looking forward scale, which includes items 1, 2, 3, 4, 5, 6 and 7, assesses general feelings of hope for the future, and had a mean of 3.23+/-.687, with a range of 1.71-4.86.

I also performed a factor analysis. The scree plot suggested 4 factors, which were extracted.

The largest factor, factor 1, included items 27 (.874), 35 (.855), 33 (.815), 79 (.802), 30 (.799), 51 (.797), 28 (.792), 83 (.790), 85 (.789), 23 (.788), 45 (.782), 43 (.763), 73 (.753), 34 (.728), 44 (.722), 21 (.708), 42 (.706), 93 (.700), 15 (.700), 57 (.695), 48 (.678), 82 (.669), 91 (.664), 76 (.662), 14 (.643), 81 (.626), 29 (.624), 26 (.621), 17 (.607), 31 (.597), 50 (.592), 8 (.592), 12 (.527), 68 (.526), 97 (.500), 96 (.380), 32 (.368) and 89 (.334). These items focused on a wide range of independent living scales, particularly items which described knowing how to do various independent living tasks. Low scorers on this scale would have difficulty with housing, employment, money management, managing their own health, and various other aspects of self-care.

This factor was positively correlated with age (r = .657, p < .001). A three-way ANOVA between three age categories was significant (p = .005), with a post-hoc analysis finding a significant difference between 17-24 year olds and 36-60 year olds. (p < .001). The 25-35 year old group was intermediate and not significantly different from either age group. None of the CLSA factors differed by sex.

The average score on this factor was 3.53+/-.888, with a range of 1.50-4.98. This factor was significantly correlated with independent living group (r = .477, p = .014), and was the only factor that correlated with that. It was also negatively correlated with Autism Internal Experience factor 1, suggesting that low scorers on this factor tended to be strongly visual thinkers and poor at verbal thinking. Receptive speech problems were also correlated with this scale (r = -.520, p = .005). In addition, factor 1 was strongly correlated with FrSBe total (r = -.422, p = .028) and apathy (r = -.565, p = .001), suggesting that low scorers on this scale tended to have frontal lobe problems, especially a lack of motivation.

Factor 2 included items 78 (.919), 5 (.911), 61 (.876), 58 (.839), 77 (.822), 39 (.794), 60 (.785), 47 (.757), 59 (.730), 38 (.729), 20 (.693), 62 (.634), 90 (.596), 4 (.566), 55 (.552), 66 (.517), 13 (.513), 54 (.451), 94 (.449), 52 (.444), 41 (.400), 36 (.396) and 65 (.353). Most of the items related to social supports, social skills, and prosocial behavior. Low scorers on this scale would be socially isolated, have poor social skills, and be somewhat abrasive individuals.

This factor was also positively correlated with age (r = .384, p < .001), but a three-way ANOVA fell short of significance (p = .054).

The average score on this factor was 3.61+/-.845, with a range of 1.30-4.91. This factor was significantly negatively correlated with AQ attention switching (r = -.353, p = .032), indicating that low scorers on CLSA factor 2 tended to have strong interests and difficulty shifting attention. This factor was also negatively correlated with FrSBe total (r = -.552, p = .001), and all three subscales (apathy r = -.606, p < .001; disinhibition r = -.332, p = .045; and executive dysfunction r = -.434).

Factor 3 included items 2 (.746), 19 (.721), 10 (.690), 53 (.677), 63 (.646), 80 (.633), 18 (.629), 67 (.583), 16 (.573), 9 (.562), 6 (.560), 71 (.506), 87 (.502), 11 (.488), 1 (.488), 22 (.486), 7 (.466), 37 (.400) and 74 (.389). Most of the items here related either to feeling self-confident and coping well or to planning ahead in practical matters. Low scorers on this scale would be insecure, have difficulty asserting themselves and lose their temper easily; they would also lack a clear sense of what future they want, not be actively working to accomplish goals and show a tendency to poor planning in areas of daily life.

The average score on this factor was 3.35+/-.692, with a range of 1.53-4.68. This factor was significantly negatively correlated with AQ attention to detail (r = -.361, p = .039), indicating that low scorers tended to notice and be interested in a lot of subtle details, possibly missing the big picture. One possibility is that this tendency to focus on details may have made them more susceptible to certain cognitive distortions that involve excessively generalizing from a single negative detail, such as overgeneralization, filtering and global labeling. This could explain the link between emotional problems and executive problems in this factor.

This factor was also negatively correlated with Autism Internal Experience factor 2 (r = -.361, p = .030), suggesting that low scorers tended to form vivid mental impressions of sensory experiences. Like other CLSA factors, this factor was also negatively correlated with FrSBe total score (r = -.617, p < .001), apathy (r = -.642, p < .001), disinhibition (r = -.435, p = .009), and executive dysfunction (r = -.431, p = .011). In addition, this factor was negatively correlated with TAS total (r = -.488, p = .003), difficulty describing emotions (r = -.510, p = .002), and difficulty identifying emotions (r = -.587, p < .001).

Factor 4 included items 64 (.619), 99 (.598), 46 (.587), 98 (.549), 84 (.549), 75 (-.521), 56 (.504), 49 (.404), 86 (.447), 72 (.427), 69 (.407), 95 (.398), 25 (.372) and  70 (.360). These items include a mix of items related to effective computer skills, ability to keep self safe from danger, and a strong racial/ethnic identity. Strangely enough, this factor also had the only negative-loading item - high scorers on this factor were less likely to bathe daily. Low scorers, in addition to bathing regularly, would tend to be poor with computers, not know how to avoid or escape dangerous situations, and have a poor sense of ethnic identity.

The average score on this factor was 4.14+/-.458, with a range of 3.00-4.93. This factor was significantly negatively correlated with AQ communication (r = -.339, p = .037), indicating that low scorers on this factor tend to have difficulty with pragmatic speech and tone of voice. It also correlated negatively with Autism Internal Experience factor 1 (r = -.432, p = .005) and factor 2 (r = -.341, p = .031), suggesting that low scorers tended to be very visual, have difficulty with verbal thought, and form vivid sensory impressions.

This factor was also negatively correlated with FrSBe disinhibition (r = -.344, p = .032) and executive dysfunction r = -.339, p = .037). In addition, the 4 non-white subjects scored significantly poorer than the white subjects (p = .034).

One item, item 3, did not load significantly on any factor. This item reflected feeling 'ready' for the next phase in life. Perhaps with the wide age range in my sample, this item was less meaningful - a 17 year old is facing a very different 'next phase in life' than a 60 year old is.

In general, many subjects seemed to struggle with aspects of independent living. Although I don't have normative data, even many subjects who were living independently responded 'somewhat' to 'no' on some important items.

Particularly concerning were the responses to a number of items reflecting abuse risk. Only 58.2% felt reasonably confident that they knew the signs of an abusive relationship, 37.3% felt they could speak up for themselves, 65.1% could turn down a sexual advance, 71.5% had somewhere they could go if they felt unsafe and 52.4% felt that they could get themselves away from a dangerous situation. This suggests that between 28-63% lacked the skills necessary to protect themselves from abuse or violence, including sexual violence.

Worst, 22% suggested that their relationships included hitting, slapping, shoving, being made fun of or name calling, which indicates that they may be currently receiving verbal or physical abuse (or else perpetrating it). In addition, 34.9% dealt with anger by hurting others and/or damaging objects. These abuse risk items were mostly not correlated with independent living status (with the exception of having a place to go if they felt unsafe).

Research has consistently found a higher risk of abuse victimization among children with disabilities, and among autistic children and adults. Unfortunately, disabled people can often be 'easy targets', making it particularly important that disabled individuals are given strategies to prevent abuse. Unfortunately, treatment practices such as hand-over-hand, compliance training and forced eye contact seem likely to increase abuse risk, since they undermine an autistic child's ability to say no and normalize situations that would generally be seen as overly intrusive control.

With regards to general independent living, this research suggests that the strongest predictor of independent living is frontal lobe problems - a link found in other populations as well, such as elderly, patients with frontal lobe injuries, and individuals with schizophrenia. Autistic traits, visual thinking, receptive speech impairment, alexithymia and difficulty with eye contact all had links with independent living as well. However, since this was a correlational study, causal links can't be determined.

In the course of this study, I found that independent living status was predicted by both overall CLSA score and the scores of many specific items. The CLSA may be a useful assessment of an autistic person's ability to live independently. It may also be a good guide for treatment goals - focusing on building skills in the specific areas that differ between autistic people who can and can't live independently might be effective in improving an autistic person's independence.

It's also important to note that in many ways, older participants had better independent living skills than younger participants. This may be a sign that independent living skills improve throughout adulthood (anecdotally, this is certainly true of me - although I still can't live independently at 26, my independent living skills have increased a great deal since I was 17).

However, this is a cross-sectional comparison, not a longitudinal one, and cohort differences could account for this effect. In particular, during the 60s and 70s, when my oldest participants were emerging adults, the costs of housing and education were much lower and entry-level employment was more readily available than it is now. This makes the challenges of becoming independent much greater even for NT young adults.

In addition, my study's selection factors may affect different generations differently. My study was an online survey posted on an online support group, which automatically selects for a minimum level of comfort and competence with computers. Likely many of my younger participants, like me and my 18 year old brother, were first exposed to computers in early childhood, which was impossible for my older participants. It may be that older autistic individuals with independent living impairments are less likely to achieve sufficient computer competence in adulthood than a similarly affected individual with childhood computer exposure.

In general, this study confirmed the well-documented difficulties in independent living among autistic adults - even individuals who show adequate language and intelligence. Unfortunately, many services aimed at assisting autistic adults with independent living require a diagnosis of cognitive disability as well, which leaves a substantial group of autistic individuals falling through the cracks. In addition, the very disability that renders these individuals in need of support also makes them less likely to be able to access whatever support is available, or even know which supports they are eligible for.


ItemsNoMostly NoSomewhatMostly YesYes
1. Most days, I feel I have control of how my life will turn out.
6
14.0%
13
30.2%
16
37.2%
5
11.6%
3
7.0%
Total: 43
2. Most days, I am proud of the way I am living my life.
5
11.6%
12
27.9%
16
37.2%
6
14.0%
4
9.3%
Total: 43
3. I feel I am ready for the next phase of my life.
6
14.0%
8
18.6%
18
41.9%
4
9.3%
7
16.3%
Total: 43
4. I believe my relationships with others will help me succeed.
3
7.1%
9
21.4%
15
35.7%
4
9.5%
11
26.2%
Total: 42
5. I have a good relationship with a trusted adult I like and respect.
5
11.6%
1
2.3%
6
14.0%
10
23.3%
21
48.8%
Total: 43
6. I can describe my vision for myself as a successful adult.
6
14.3%
12
28.6%
9
21.4%
8
19.0%
7
16.7%
Total: 42
7. I believe I can influence how my life will turn out.
1
2.3%
2
4.7%
15
34.9%
11
25.6%
14
32.6%
Total: 43
8. I know how to find financial aid to help pay for my education or training.
10
23.3%
11
25.6%
10
23.3%
5
11.6%
7
16.3%
Total: 43
9. I know what type (college, trade school) of education I need for the work I want to do.
7
17.1%
5
12.2%
4
9.8%
8
19.5%
17
41.5%
Total: 41
10. I have recently talked to an adult who works in a job I would like to have.
20
47.6%
8
19.0%
1
2.4%
5
11.9%
8
19.0%
Total: 42
11. I can explain the benefits of doing volunteer work.
2
4.7%
4
9.3%
11
25.6%
12
27.9%
14
32.6%
Total: 43
12. I know where to find information about job training.
7
16.7%
7
16.7%
15
35.7%
6
14.3%
7
16.7%
Total: 42
13. I know how to find work-related internships.
19
45.2%
3
7.1%
10
23.8%
6
14.3%
4
9.5%
Total: 42
14. I get my work done and turned in on time.
2
4.7%
4
9.3%
12
27.9%
19
44.2%
6
14.0%
Total: 43
15. I get to school or work on time.
3
7.1%
3
7.1%
5
11.9%
15
35.7%
16
38.1%
Total: 42
16. I look over my work for mistakes.
2
4.7%
4
9.3%
4
9.3%
10
23.3%
23
53.5%
Total: 43
17. I know where I can get tutoring or other help with school work.
9
22.5%
5
12.5%
9
22.5%
6
15.0%
11
27.5%
Total: 40
18. I know how to prepare for exams and/or presentations.
3
7.0%
6
14.0%
9
20.9%
13
30.2%
12
27.9%
Total: 43
19. I can take criticism and direction at school or work without losing my temper.
3
7.0%
10
23.3%
7
16.3%
17
39.5%
6
14.0%
Total: 43
20. I have an adult in my life who cares about how I am doing at school or work.
5
11.6%
2
4.7%
3
7.0%
12
27.9%
21
48.8%
Total: 43
21. I know where I can get help with an income tax form.
8
18.6%
12
27.9%
4
9.3%
9
20.9%
10
23.3%
Total: 43
22. I know how to get help from my school or workplace's mental health services.
11
27.5%
3
7.5%
14
35.0%
8
20.0%
4
10.0%
Total: 40
23. I know how to get the documents I need for work, such as my Social Security card and birth certificate.
2
4.7%
4
9.3%
11
25.6%
12
27.9%
14
32.6%
Total: 43
24. I know the reasons why my personal contacts are important for finding a job.
3
7.0%
6
14.0%
15
34.9%
9
20.9%
10
23.3%
Total: 43
25. I know what sexual harassment and discrimination are.
0
0.0%
2
4.7%
1
2.3%
8
18.6%
32
74.4%
Total: 43
26. I know what employee benefits are.
7
16.3%
4
9.3%
11
25.6%
8
18.6%
13
30.2%
Total: 43
27. I can fill out a W-4 payroll exemption form when I get a job.
10
27.0%
5
13.5%
6
16.2%
4
10.8%
12
32.4%
Total: 37
28. I know what the information on a pay stub means.
6
14.0%
5
11.6%
10
23.3%
7
16.3%
15
34.9%
Total: 43
29. I know how to prepare for a job interview.
5
11.6%
6
14.0%
10
23.3%
15
34.9%
7
16.3%
Total: 43
30. I know how to fill out a job application.
4
9.5%
2
4.8%
6
14.3%
16
38.1%
14
33.3%
Total: 42
31. I know how to develop my resume.
6
14.0%
6
14.0%
16
37.2%
8
18.6%
7
16.3%
Total: 43
32. I know how to use public transportation to get where I need to go.
2
4.7%
4
9.3%
6
14.0%
15
34.9%
16
37.2%
Total: 43
33. I can figure out all the costs of car ownership, such as registration, repairs, insurance and gas.
9
20.9%
6
14.0%
7
16.3%
6
14.0%
15
34.9%
Total: 43
34. I can explain how to get and renew a driver's license or state ID card.
3
7.0%
5
11.6%
10
23.3%
9
20.9%
16
37.2%
Total: 43
35. I know what happens in my state if I am caught driving without car insurance or a diver's license.
3
7.0%
5
11.6%
8
18.6%
10
23.3%
17
39.5%
Total: 43
36. I keep records of the money I am paid and the bills I pay.
7
16.3%
11
25.6%
11
25.6%
3
7.0%
11
25.6%
Total: 43
37. I plan for the expenses that I must pay each month.
5
11.9%
7
16.7%
6
14.3%
10
23.8%
14
33.3%
Total: 42
38. I know an adult I can go to for financial advice.
4
9.3%
7
16.3%
6
14.0%
8
18.6%
18
41.9%
Total: 43
39. I know an adult I could live with for a few days or weeks if I needed to.
6
14.0%
5
11.6%
1
2.3%
7
16.3%
24
55.8%
Total: 43
40. I know what can happen if I break my rental lease.
4
9.3%
6
14.0%
6
14.0%
7
16.3%
20
46.5%
Total: 43
41. I know how to get emergency help to pay for water, electricity and gas bills.
15
35.7%
12
28.6%
5
11.9%
4
9.5%
6
14.3%
Total: 42
42. I know how to fill out an apartment rental application.
6
14.0%
6
14.0%
6
14.0%
10
23.3%
15
34.9%
Total: 43
43. I can figure out the costs to move to a new place, such as deposits, rents, utilities, and furniture.
7
16.3%
3
7.0%
9
20.9%
10
23.3%
14
32.6%
Total: 43
44. I know how to find safe and affordable housing.
10
23.3%
5
11.6%
9
20.9%
10
23.3%
9
20.9%
Total: 43
45. I know the advantages and disadvantages of using a check cashing or payday loan store.
9
20.9%
5
11.6%
2
4.7%
9
20.9%
18
41.9%
Total: 43
46. I use online banking to keep track of my money.
11
26.2%
2
4.8%
4
9.5%
6
14.3%
19
45.2%
Total: 42
47. I know an adult who would help me if I had a financial emergency.
4
9.3%
3
7.0%
7
16.3%
8
18.6%
21
48.8%
Total: 43
48. I know how to balance my bank account.
5
11.9%
3
7.1%
7
16.7%
11
26.2%
16
38.1%
Total: 42
49. I know the importance of a good credit score.
5
11.6%
2
4.7%
9
20.9%
7
16.3%
20
46.5%
Total: 43
50. I understand the disadvantages of making purchases with my credit card.
1
2.3%
0
0.0%
4
9.3%
10
23.3%
28
65.1%
Total: 43
51. I understand how interest rates work on loans or credit purchases.
8
18.6%
4
9.3%
7
16.3%
5
11.6%
19
44.2%
Total: 43
52. I show others that I care about them.
5
11.6%
4
9.3%
11
25.6%
18
41.9%
5
11.6%
Total: 43
53. I can deal with anger without hurting others or damaging things.
3
7.0%
0
0.0%
12
27.9%
14
32.6%
14
32.6%
Total: 43
54. I think about how my choices impact others.
3
7.0%
6
14.0%
10
23.3%
15
34.9%
9
20.9%
Total: 43
55. I have information about my family members.
0
0.0%
6
14.0%
12
27.9%
13
30.2%
12
27.9%
Total: 43
56. I know the signs of an abusive relationship.
1
2.3%
3
7.0%
14
32.6%
14
32.6%
11
25.6%
Total: 43
57. My relationships are free from hitting, slapping, shoving, being made fun of, or name calling.
2
4.9%
1
2.4%
6
14.6%
16
39.0%
16
39.0%
Total: 41
58. I know an adult who could be a grandparent, aunt or uncle to my children now or my future children.
7
16.7%
1
2.4%
2
4.8%
5
11.9%
27
64.3%
Total: 42
59. I have friends or family to spend time with on holidays and special occasions.
5
11.6%
5
11.6%
7
16.3%
7
16.3%
19
44.2%
Total: 43
60. I can get in touch with at least one family member when I want to.
2
4.8%
1
2.4%
0
0.0%
12
28.6%
27
64.3%
Total: 42
61. I am part of a family and we care about each other.
4
9.3%
6
14.0%
5
11.6%
5
11.6%
23
53.5%
Total: 43
62. I have friends I like to be with who help me feel valuable and worthwhile.
6
14.0%
11
25.6%
8
18.6%
5
11.6%
13
30.2%
Total: 43
63. I can explain the difference between sexual orientation and gender identity.
1
2.3%
2
4.7%
8
18.6%
11
25.6%
21
48.8%
Total: 43
64. I can describe my racial and ethnic identity.
1
2.4%
0
0.0%
3
7.1%
14
33.3%
24
57.1%
Total: 42
65. I know how to show respect to people with different beliefs, opinions and cultures.
1
2.3%
0
0.0%
7
16.3%
19
44.2%
16
37.2%
Total: 43
66. I know how to act in social or professional situations.
4
9.3%
7
16.3%
17
39.5%
13
30.2%
2
4.7%
Total: 43
67. I can speak up for myself.
7
16.3%
7
16.3%
13
30.2%
10
23.3%
6
14.0%
Total: 43
68. I know where to go to get information on sex or pregnancy.
5
11.6%
4
9.3%
5
11.6%
10
23.3%
19
44.2%
Total: 43
69. I know how to prevent getting pregnant or getting someone else pregnant.
0
0.0%
0
0.0%
0
0.0%
4
9.3%
39
90.7%
Total: 43
70. I know ways to protect myself from sexually transmitted diseases (STDs).
0
0.0%
0
0.0%
3
7.0%
7
16.3%
33
76.7%
Total: 43
71. I can turn down a sexual advance.
1
2.3%
4
9.3%
10
23.3%
7
16.3%
21
48.8%
Total: 43
72. I have a place to go when I feel unsafe.
2
4.8%
3
7.1%
7
16.7%
12
28.6%
18
42.9%
Total: 42
73. I know how to get myself away from harmful situations.
2
4.8%
4
9.5%
14
33.3%
12
28.6%
10
23.8%
Total: 42
74. I brush my teeth daily.
2
4.7%
12
27.9%
4
9.3%
3
7.0%
22
51.2%
Total: 43
75. I bathe (wash up) daily.
4
9.3%
12
27.9%
6
14.0%
14
32.6%
7
16.3%
Total: 43
76. I know how to get the benefits I am eligible for.
7
16.3%
11
25.6%
14
32.6%
5
11.6%
6
14.0%
Total: 43
77. There is at least one adult I trust who would be legally allowed to make medical decisions for me and advocate for me if I was unable to speak for myself.
6
14.0%
5
11.6%
6
14.0%
3
7.0%
23
53.5%
Total: 43
78. I have at least one trusted adult who would visit me if I were in the hospital.
4
9.3%
2
4.7%
1
2.3%
8
18.6%
28
65.1%
Total: 43
79. I know how to get health insurance.
11
26.2%
8
19.0%
10
23.8%
2
4.8%
11
26.2%
Total: 42
80. I know my family medical history.
6
14.0%
6
14.0%
16
37.2%
9
20.9%
6
14.0%
Total: 43
81. I know when I should go to the emergency room instead of the doctor's office.
5
11.6%
6
14.0%
13
30.2%
8
18.6%
11
25.6%
Total: 43
82. I know how to make my own medical and dental appointments.
4
9.3%
5
11.6%
5
11.6%
13
30.2%
16
37.2%
Total: 43
83. I can get medical and dental care when I need it.
6
14.0%
4
9.3%
11
25.6%
13
30.2%
9
20.9%
Total: 43
84. I can take care of my own minor injuries and illnesses.
1
2.3%
1
2.3%
4
9.3%
16
37.2%
21
48.8%
Total: 43
85. I know how to use a fire extinguisher.
5
11.9%
5
11.9%
10
23.8%
8
19.0%
14
33.3%
Total: 42
86. I know the products to use when cleaning the bathroom and kitchen.
2
4.8%
2
4.8%
5
11.9%
11
26.2%
22
52.4%
Total: 42
87. I keep my living space clean.
5
11.6%
5
11.6%
18
41.9%
11
25.6%
4
9.3%
Total: 43
88. I know how to do my own laundry.
1
2.3%
0
0.0%
4
9.3%
7
16.3%
31
72.1%
Total: 43
89. I understand how to read food product labels to see how much fat, sugar, salt and calories the food has.
0
0.0%
0
0.0%
4
9.3%
8
18.6%
31
72.1%
Total: 43
90. I think about what I eat and how it impacts my health.
2
4.7%
8
18.6%
12
27.9%
13
30.2%
8
18.6%
Total: 43
91. I can make meals with or without using a recipe.
5
11.6%
1
2.3%
10
23.3%
9
20.9%
18
41.9%
Total: 43
92. When I shop for food, I take a list and I compare prices.
5
11.9%
9
21.4%
12
28.6%
4
9.5%
12
28.6%
Total: 42
93. If someone sent me messages online that made me feel bad or scared, I would know what to do or who to tell.
3
7.0%
8
18.6%
7
16.3%
8
18.6%
17
39.5%
Total: 43
94. I would not post pictures or messages if I thought it would hurt someone's feelings.
1
2.3%
3
7.0%
6
14.0%
10
23.3%
23
53.5%
Total: 43
95. I know the risks of meeting someone in person that I met online.
0
0.0%
0
0.0%
3
7.0%
11
25.6%
29
67.4%
Total: 43
96. I can create, save, print and send computer documents.
0
0.0%
0
0.0%
4
9.3%
6
14.0%
33
76.7%
Total: 43
97. I know how to use my email account.
0
0.0%
1
2.3%
1
2.3%
5
11.6%
36
83.7%
Total: 43
98. I can find what I need on the Internet.
0
0.0%
0
0.0%
2
4.7%
9
20.9%
32
74.4%
Total: 43
99. I know where to go to get on the Internet.
1
2.3%
0
0.0%
1
2.3%
7
16.3%
34
79.1%
Total: 43