Friday, November 1, 2013

Aspergers Syndrome and Depression: the masking effect

Aspergers Syndrome and Depression: the masking effect

In the first part of this series on autism spectrum disorder (ASD) and depression, I offered a broad description of how depression operates (click here for that post). This time around I’d like to get into more specifics.
What makes depression so dangerous for someone on the spectrum is that it can actually hide behind autistic traits. My fear is that too few people realize: depression and ASD have several features in common, creating a kind of “masking effect”. A trait commonly associated with ASD can in some cases be depression masquerading as that trait, thus allowing it go undetected.
In my own life, I’ve found 3 features that ASD and depression have in common: absolute, black and white thinking; repetitive/obsessive thoughts; and, finally, intense feelings of alienation.
To better understand the interplay between ASD and depression, let’s take a closer look a these traits.

I. Absolute, black and white thinking.

My mind seeks out patterns. I think it helps provide me with a sense of stability, but there’s also an element of play involved. Just looking around and identifying patterns in different facets of the world, it’s something I enjoy.
One thing I’ve noticed: in order to hold patterns in my mind, be it with small things like a film, or big concepts like human behavior, I generally think in broad absolutes. Good, bad; right, wrong. Patterns are easier to establish if I can group things into easily identifiable categories; so, possibly for this reason, I am a fairly rigid thinker. Not rigid in a bad way; I just find that I habitually think in very black and white terms as a way of navigating the world. It’s how I see things, and for the most part, it works for me. “This factor should always work this way. This other factor should always work that way.” It can lead to conceptual ruts, but again, it works pretty well for the most part.
I’m on the spectrum, and I think this habit is an outgrowth of my neurological differences. The problem I’ve run into is that depression is also characterized by very absolute, black and white thinking. And because of this, I can have a difficult time identifying the onset of a depressive state.
Many people describe depression as a feeling…a kind of numb sadness that creates a physical sensation of fatigue. And while that is true, I think this feeling is a symptom, not the core factor. To me, depression is first and foremost a pattern of negative thoughts. Thoughts that frame the world as meaningless…that make ones life feel damaged beyond repair. It’s the thought patterns that drive this bleak world view and create a powerful sense of futility
Depression is effective at creating a sense of hopelessness precisely because it utilizes rigid, black and white categories. “My life is pointless. The world is meaningless. Nothing will ever change,” and so on. These rigid absolutes can control ones perceptions and make it very hard to see any light at the end of the tunnel.
As a result, someone on the spectrum can transition from their normal thought patterns into a depressive state without realizing it…and it can also be invisible to others, due to the similarities in these thought patterns.

2. Repetitive/obsessive thoughts.

Depressive thoughts tend to be black and white in nature, but they can also be brutally repetitive, to the point of obsession. Endlessly repeating thoughts about hopelessness, thoughts about the need to die: depression can be a relentless mental treadmill that repeats the same dire thoughts on a never ending loop.
When I was depressed, anything and everything from my daily life went under the depressive microscope: “this is pointless, this serves no purpose.” Everything I did, saw, was completely drained of meaning by these negative observations. I also applied this negativity to the bigger picture of life itself: people, the world, the universe; all of the broad categories that make up existence went into the mental grinder of depression. Mentally, it was exhausting, but I continued to think the same thoughts, over and over.
Asperger’s/ASD can also be characterized by obsessive thoughts. When I’m not depressed, I spend most of my day dwelling on whatever my current obsessive interest is. It can be a book, a theory, a hobby. For me, obsessive interests aren’t a bad thing…it’s just the way that I engage with the world.
Once again, these similarities can make it very hard to see the arrival of depression. My thoughts do not go through some radical shift. Obsessive thoughts about my interests become obsessive thoughts about hopelessness. The topic changes…but the overall thought pattern stays exactly the same.
It’s the masking effect, allowing depression to hide behind autistic traits like a parasite.

3. Feelings of alienation.

This one is self explanatory, but it’s worth focusing on since the feelings of alienation with both depression and ASD can be eerily similar.
If you look at personal stories from folks on the spectrum, they often share a common theme: feeling like an alien around others. I know that I struggle with social pragmatics, and during interactions, it can definitely feel like being in a land where the customs are strange and I don’t speak the language.
I have a hard time perceiving non-verbal communication and, as a result of this, I experienced significant delays with basic social milestones when I was growing up.
To make matters worse, I could see other kids interacting with ease, making connections. The world seemed like it was designed specifically for them, for other people; I didn’t seem to have a place in their world. Put all of these factors together- confusion during social interactions; the resulting social delays; loneliness- and you’re left with a powerful sense of alienation. By the time I was a teenager, this feeling was just a normal part of my every day life. I put a lot of effort into observing others, trying interpret the social realm…even before I was depressed, I felt like an alien visitor hiding behind a human mask.
Depression similarly creates a feeling of being on the “outside” of the world. What basically happens as a person sinks into depression is that the mind attempts to let go of life. It wants to fully detach itself from a world that has caused it so much pain and confusion. It’s a frightening state of being that leaves one with the impression…just like with Aspergers…that the world is a place for other people, not for you.
I remember being at the grocery store one day. This was during a particularly bleak time in my life. And I basically became trapped inside of the store, because I could no longer remember why I was there. My mind just blanked out. I roamed around, trying to recall what I needed. I walked up and down aisles. I sat on benches, tried to wait out the confusion. But everything felt so incredibly pointless that I couldn’t articulate what I might need or why I was even there. I just stared at soup cans and apples and the wheels on shopping carts and thought about how everything here was just shapes, empty of content. Meaningless. The people wandering past seemed like wind-up toys bobbling through ridiculous tasks. “They’re just shapes buying shapes,” I thought. I was overwhelmed with a sense that the world was something very far away…and it was as world for the wind-up toys, not for me.
I never bought anything that day; eventually, I just went home. It was something that happened from time to time. I would find myself “lost” in familiar places due to the lethargy and mental confusion of depression.
The interplay between Asperger’s and depression can be a constant, subtle thing. Subtract depression and social interactions still feel very confusing, strange. Subtract Asperger’s and depression still makes the world feel like it’s drifting away. Put the two together and you get a perfect storm for alienation and emotional detachment.
Once again, the transition to a depressive state can be invisible, due to these similarities. If you’re accustomed to feeling odd around people, the sense of being “outside” of the world caused by depression just seems like a natural fit.

Conclusion

At the age of 30- after nearly a decade of social isolation- I spoke with a psychologist. I was diagnosed with both Asperger’s Syndrome and clinical depression. We began the process of discussing, distinguishing and untangling the two factors from one another. The idea of going to therapy was something I hated, but I can safely say: it was necessary. I wasn’t going to survive on my own. It was ultimately a beneficial, constructive process, and I do feel that with something like depression, professional help is the best way to go.
Two diagnoses and multiple traits have been discussed here, but the take-away is pretty straightforward: as a result of the similarities described above, a potentially lethal mood disorder can hide behind the neurological differences of the autism spectrum. Hopefully, the more we talk about this- and the more personal stories we share- the more we will better understand these issues and create solutions. In future posts, I’ll discuss some of the techniques that helped me to balance ASD and depression.
[Note: these observations are based on my personal experiences with these issues. Autistic traits can and do vary from person to person; and depression can manifest in different ways, depending on the person. Learning to differentiate depression and ASD will require knowing the individual, and understanding their unique personality and needs. I'm on the spectrum, but I can't speak for others and I am not a mental health professional; this post is intended as a starting point for thinking about these issues. And to clarify: the DSM VI was recently released, with changes to spectrum terminology; for the time being, I am using the terms Aspergers and ASD interchangeably.]
M Kelter is currently making a mess of things on Twitter and Facebook; click to follow along and watch the confusion unfold.

Thursday, October 31, 2013

Autism Acceptance Day: Imagine a World Where Everyone Was Against You....

Autism Acceptance Day: Imagine a World Where Everyone Was Against You....

Disabled 5-year-old's death in Kenner classroom is re-examined in court | NOLA.com

Disabled 5-year-old's death in Kenner classroom is re-examined in court | NOLA.com

WATCH: Special Needs Children Choked, Tackled, Electrocuted & Killed In Schools (GRAPHIC, VIDEO) | The Libertarian Republic

WATCH: Special Needs Children Choked, Tackled, Electrocuted & Killed In Schools (GRAPHIC, VIDEO) | The Libertarian Republic

Schools Claim Wide Leeway for Restraining Special Needs Kids

ABC News filed a special report that featured the stories of special needs children who are brutally restrained in their school environments. Schools believe they need a range of tactics and leeway to deal with autistic children who “act out”.
Some of the tactics include receiving electric shocks and choke-holds, as well as securing students in restraint rooms. Kids have died from some of these incidents. A surveillance tape from the interview below shows five teachers tackling and restraining a child in what they called a “therapeutic hold”, which killed him. Doctors blamed the death on “cardiac arrest while being subdued”.


Read more at TLR: WATCH: Special Needs Children Choked, Tackled, Electrocuted & Killed In Schools (GRAPHIC, VIDEO) | The Libertarian Republic http://thelibertarianrepublic.com/watch-special-needs-children-choked-tackled-electrocuted-killed-schools-graphic-video/#ixzz2jJXlgOx2
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JetBlue Launches 'Blue Horizons For Autism': Program Aims To Make Flying Easier For Families With Autistic Children

JetBlue Launches 'Blue Horizons For Autism': Program Aims To Make Flying Easier For Families With Autistic Children

Wednesday, October 30, 2013

Performance of Students With Disabilities Hard to Gauge in School Accountability - On Special Education - Education Week

Performance of Students With Disabilities Hard to Gauge in School Accountability - On Special Education - Education Week

Getting a clear picture of how students with disabilities have performed under the accountability measures once mandated by No Child Left Behind is difficult because of differences among states in measuring progress, says a report from the National Center for Education Evaluation and Regional Assistance, a project of the Institute of Education Sciences.
The Inclusion of Students With Disabilities in School Accountability Systems: An Update is the latest snapshot of how schools fared under an accountability system that required them to break out the performance of students with disabilities and move them towards 100 percent academic proficiency. The report looks specifically at the four school years from 2006-07 to 2009-10; school accountability has in recent months changed dramatically with the permission of accountability waivers that have now been granted to 42 states and the District of Columbia. 
Looking at student performance, the report found that in the 31 states with relevant data that the researchers were able to gather, more than half—56 percent—of the public schools were not accountable for the students with disabilities subgroup in any of the four years examined. In contrast, 23 percent of schools were consistently accountable in each of those years. 
The researchers then turned their attention to schools failing to make adequate yearly progress, and for that measure were able to collect information from 39 states and the District of Columbia for 2009-10. Six percent of schools in those states that did not make AYP did so solely because of the students with disabilities subgroup. Twenty-eight percent missed the mark because of the disability subgroup and some other factor.
Once a school was identified as being in need of improvement because of the performance of students with disabilities, it tended to stay that way: 83 percent of schools in that category in 2007-08 retained that classification through 2010-11. The same held true for schools that did not face any sanctions because of the disability subgroup: 74 percent of the schools not identified for improvement in 2007-08 continued in that status through 2010-11.
So what to make of all of these statistics? In their conclusion, the authors of the report say that it is hard to tell.
Although the ESEA may be straightforward in its overall objective to improve the achievement of all students, the numerous provisions and regulations may make it challenging to determine exactly how well [students with disabilities] have been performing. Adding to these complexities is the fact that states use different tests, adopt different proficiency standards, use different methods for measuring progress, and set different minimum subgroup size for accountability purposes. These differences lead to variation across states in how [students with disabilities] are included or excluded from school accountability systems and how [students with disabilities] performance affects schools' AYP determination and school improvement status, which make cross-state comparisons difficult to interpret.
An upcoming report from IES will focus on school practices that relate to student educational outcomes.

Monday, October 28, 2013

Lee's Summit R-7 School District: Action Alert: Group Homes and Institutions are Not Community Living

Lee's Summit R-7 School District: Action Alert: Group Homes and Institutions are Not Community Living

What does "community" mean to you? For some people, this question doesn't mean much. But for the hundreds of thousands of Americans receiving Medicaid Home and Community Based Services (HCBS), the meaning of community has huge implications.
 
In 2010, the State of Missouri tried to use Medicaid funds that were intended to serve people with disabilities in the community to build group homes on the same property as an institution. The Centers for Medicare and Medicaid Services (CMS) rightly  refused to allow Missouri to use Medicaid Home and Community Based Services (HCBS) funding for this plan, as the purpose of HCBS funding is to help people avoid institutionalization, not to fund placements that segregate people from their communities.
 
As a disability rights organization committed to advancing equal access and inclusion for all people with disabilities, ASAN belives strongly that anything that segregates people with disabilities from our communities is not community.
 
CMS has been trying to implement strong minimum standards for HCBS settings, to prevent what almost happened in Missouri from happening again.  CMS has proposed regulations that would prevent HCBS dollars from going to institutions, settings that are on the grounds of an institution, settings that are segregated on the basis of disability, and settings that have the characteristics of an institution, such as lack of privacy or rules about when people can eat and sleep. This is a significant opportunity for the disability community to support a real minimum standard for the meaning of community living.
 
We need your help to make these standards a reality. CMS will issue a final rule by the end of 2013. Unfortunately, the institution, nursing home, and sheltered workshop industries have already written to CMS and Congress opposing any standards for how and where HCBS dollars are used. We need our community to write in to tell Congress and CMS that:
  • Community living cannot occur on the grounds of an institution or in settings that operate like institutions, denying people privacy and imposing rules that limit personal freedom and choice.
  • Community supports do not involve the use of sheltered workshops and other facility-based settings that separate and congregate people on the basis of disability.
HCBS funding should be used to support people with disabilities living in typical housing that they control, located in existing communities, alongside neighbors with and without disabilities.
 
HCBS funding should be used for supported employment and community involvement - not for sheltered workshops or segregated day service settings.  
 
Here's what you can do:
  • Don't hesitate to add your thoughts about what community living means to you. 
  • Send a copy of this advocacy alert to your friends and colleagues encouraging them to write in too - the more people who write in, the stronger our position will be. Help us get the word out!
This is a critical opportunity to have our voices heard. Now is the time to speak up and speak loudly about the importance of these new regulations.