Disability 101 Part 4: Autism

Hello, readers!

I just returned yesterday from a five-day speakers’ conference and am blown away at the uplifting environment and the friends I met. I was actually a little reluctant–okay, a lot reluctant–to get back to “the real world.” But I promised you a month’s worth (perhaps more) of these posts, so back I am. Today’s topic is autism.

I saved autism until now for a couple of reasons. First, because it’s a highly complex disability–which most are, actually, but this one is more so in my humble opinion. Second, because it is so prevalent right now. Awareness, research, and increased incidence of autism have made it easier for people to educate themselves if they choose. But when educating ourselves about autism or any other disability, we have to be careful with our sources. And with autism in particular, there’s a lot of conflicting information out there. I am going to do the best I can to give you basic, trustworthy information. So here we go.

What is autism?

The very definition of autism is complex. A lot of people don’t even use the word “autism”; they instead use “autism spectrum disorders” or ASD. This is because autism can encompass so many different types of abilities and disabilities. According to autismsciencefoundation.org, autism is “a brain-based disorder characterized by communication challenges and restricted, repetitive behaviors, activities, and interests.” The Center for Disease Control considers autism a “developmental disability” that can cause “significant challenges” in communication, socialization, and other areas. It is important to note that, while some cases of autism cause cognitive or mental disabilities, autism itself is *not* a mental disability. Many people with autism have average, above average, or gifted IQs and can function quite well cognitively.

Autism is not considered a classical physical disability either, although some people who have autism do experience physical manifestations. For example, some people with Asperger’s Syndrome, which is considered an ASD, may have coordination problems. “Stimming,” or the repetitive motions and behaviors some people use, could be considered a physical symptom also. Stimming can be anything from swaying or rocking, to clicking a pen, twisting your hands, or repeating words (echolalia). Stimming should be considered a natural part of autism, not a “behavior” that needs to be punished out of a person. (Please note that stimming can be curbed; if it is violent, it should be. But that process should be gentle and take into account the whole person).

How long has autism been around?

Like many if not all disabilities, it’s probably been around forever, but it was first identified and studied circa 1943, thanks to Dr. Leo Kanner. Kanner’s research involved 11 children who, though they didn’t seem to be interested in other people, were highly interested in the environment around them.

Autism gained more publicity in the ’60s and ’70s, partially thanks to so-called experts who blamed parents, especially mothers, for the incidence of it. Mothers of kids with autism were disparagingly called “refrigerator mothers,” and children with autism were regularly institutionalized, shut away from society and life. Thanks to pioneers like Temple Grandin and her mother, as well as increased understanding, autism is now being seen in a more positive light, but it is quite a slow process. That’s why advocates, teachers, attorneys, and others are here.

How common is autism?

The last statistic I encountered was about 1 in 88 births, according to the CDC. According to the Autism Science Foundation, autism is also 4.5 times more likely to affect boys than girls. However, research indicates autism’s prevalence may increase in coming years. In fact, some people with autism believe that it isn’t a disorder at all; people with it simply have a different brain makeup. As in, people without autism have PCs; those with it have Macs. Thus, the people who subscribe to this view think autism will someday be a “new normal.” I’m somewhat inclined to agree; in fact, I think that might be a very good thing.

Are there classical features?

No. In fact, one of the worst things you can say to or about a person with autism is, “You don’t look autistic” or “But you’re so normal!” I’d like to reiterate that trying to define disability by looks alone is extremely harmful, even if classical features exist.

How do people with autism feel about people-first language?

I wanted to include this part because I’ve seen many responses. Many people actually refer to themselves as autistic or “autistics” or “autists.” They believe autism is an organic part of their identity, so to them, saying “person with autism” is to deny who they are. I respect that completely. Since this is a person-first language blog I will continue to say “people with autism,” but may use “autistic” at various points.

Can people with autism be independent?

As with all disabilities, it completely depends on the person. Ironically enough, persons with high-functioning autism (HFA) may have the hardest times becoming independent because, while they are highly intelligent, basic things about the environment trip them up. For example, an autistic person may have an encyclopedic knowledge of forensics and be able to work as a police detective in theory–but organization, overstimulation in the workplace, and other factors make that difficult.

This does not mean autistic people can or should only be consigned to menial jobs and supervised living. As with other disabilities, people with autism should be seen and defined by their names, their strengths, and what they can give to the world. Individualized attention and services that work with the whole person are desperately needed.

Should we use “functioning labels” when talking about autism?

This is a tricky one, because talking in terms of function helps us to understand different types of autism. However, I personally wish we could stop using “functioning labels” like high- or low-functioning for everybody, even if these terms are technically correct. Why? Because we don’t use them for TAB people (we don’t say, “She’s a low-functioning driver because she can’t parallel park.” Also, because how you “function” changes from day to day and situation to situation. The Simon with autism who gets excellent math grades and loves anything to do with animals, is the same Simon who may stim or scream when overstimulated.

Myths and Facts:

Myth: People with autism cannot show empathy/are selfish/turn out to be serial killers.

Truth: Oh, do I EVER hate this myth! It exists for many reasons; for example, some people believe Adam Lanza, the shooter of Newtown, CT, had some form of autism. Also, the word “autism” contains the stem “aut,” meaning “self” (as in, automobile, autobiography). For that reason and others, many people assume autistic people cannot and will not empathize with others.

The truth is, people with autism can and do show incredible empathy; in fact, many autistic people may empathize too much. In empathizing too much, they may convey an attitude of, “It’s all about me,” but this is NOT what is intended.

Myth: People with autism are not social.

Truth: People with autism often find it harder to socialize with peer groups. Sometimes this can be because of specialized interests, and sometimes it’s because they can’t read some social cues. However, autistic people can socialize well if given your time, empathy, and patience. Some autistic people are actually very social, to the point of extraversion, but may find certain cues or phrases like idioms confusing.

Myth: Girls don’t really get autism.

Truth: I frequent a lot of web pages that talk about the struggle of autism as experienced by women and girls. It is true that females are harder to diagnose than males. This can happen for a lot of reasons, but it’s often because women and girls are better “actors” than guys. That is, girls and women will observe peers and learn to imitate their social cues and interactions to fit in. Boys do this too, but may not be as proficient at it. Also, girls with autism tend to have specialized interests like dolls, books, or fashion. These are things a lot of typical girls like, so unless you know the particular person well, those interests tend to “blend in.” The same cannot always be said for boys, who may have interests in dinosaurs, trains, Medieval armor, etc. These interests are less common, and boys may tend to memorize and repeat more information about them than girls. However, girls do get ASDs and should be given the support they need to live with them.

Myth: Autism is a tragedy.

Truth: Unfortunately, there are many, many people who still believe this, courtesy of expert opinions and organizations like Autism Speaks (which does not speak for me, nor do they speak for many other autistics). Parents who have autistic children often picture worst-case scenarios of people who will need 24-hour care, never socialize, and never mentally leave toddlerhood. While this sometimes happens it is not the norm. People with autism can and do lead happy, significant, and fulfilling lives.

Myth: If my child/teen/loved one with autism is low-functioning, there is no hope.

Truth: There is always hope. Your love and tenacity will make a big impact in this person’s life. This person does love you, even if he or she cannot say it. Hold onto that. Seek out services and individuals who will respect you and your loved one, and treat him or her like a person while helping you deal with the ramifications of autism.

Myth: X causes autism.

Truth: I don’t care what you replace that X with. There are a billion different theories regarding what causes autism, from vaccines to milk to breathing wrong. None of these have been conclusively proven and studies regarding them have often been harmful (ex.: vaccine studies, although I am not here to talk about the vaccination debate at the moment). Get off the autism cause bandwagon and just befriend and support those living with it.

Myth: X cures autism.

Truth: There is no current cure; many autistics don’t want one, and we need to respect that. We also need to beware of information on abusive cures, such as bleach enemas. (Yes, some parents have given their children bleach enemas in hopes of curing autism!) You cannot “therapy” autism away. You can’t spank it away. You can’t cure it with a diet or exercise regimen. It’s just there. Embrace autistics as they are, instead of trying to “fix” them. Autism is not the end of the world–but constant cure efforts could severely impact their world. Let’s instead make the world a good place for autistic people to live and thrive.

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Disability 101 Part 3: FASD

Hello readers,

Today’s “lesson” focuses on Fetal Alcohol Syndrome Disorder (FASD), sometimes called Fetal Alcohol Effects (FAE). FASD made it onto my list thanks to interest from a couple of readers who requested I cover it. So thanks, readers, and here we go.

What is FASD?

FASD is called an “umbrella term” for a range of effects, including lifelong disabilities, that befall a baby whose mother drank alcohol while pregnant. Unlike Down Syndrome and cerebral palsy, FASD is not considered a clinical diagnosis. Instead, an individual known to have fetal alcohol syndrome would be diagnosed with such terms as Neurobehavioral Disorder/Alcohol Exposed, Fetal Alcohol Syndrome, Partial FAS, or any number of other terms. This is meant to reflect the “spectrum” nature of FASD, as well as the differing amounts of alcohol exposure an individual may have had in the womb.

About 40,000 babies are born with FASD and diagnosed with a disorder on that spectrum in the U.S. each year. The symptoms are myriad and unique; much like CP and some other disabilities, two people may present with some of the same symptoms but not all of them. The symptoms an individual presents with often depends on his or her specific diagnosis. For example, symptoms are different for partial FAS than they are for “full” Fetal Alcohol Syndrome.

Are there classical features?

Yes and no. Some people present with certain features such as minor facial differences like small eyes or a thin upper lip. Sometimes the facial differences are more noticeable, and sometimes no discernible physical features exist. Some people are born with their height and/or weight below the 10th percentile for their age groups, and continue to have growth issues throughout life. It’s important to note that while these features can be major markers of FASD, it sometimes cannot be proven that the person was exposed to alcohol. The origin of the features may be traced back to something else, or the cause may be unknown.

Does FASD impair functioning or learning?

To some degree, in many cases. According to depts.washington.edu, FASD is “the leading known cause of intellectual disabilities,” and there can be neurological and functioning impairments. A person with FASD may also have trouble with what’s called “adaptive behavior.” However, the manifestation of these effects depends on how much alcohol the person was exposed to, how much brain damage was sustained, and other factors. Intellectual and neurological impairments seem to occur across all forms of diagnosis, but as with other disabilities, the degree of impairment determines a lot about how the individual’s disabilities will be handled.

Many people with FASD are considered to have “invisible disabilities,” sometimes because their disabilities get blamed on something else. For example, a person with FASD, especially a child, may not be able to connect consequences to actions. Especially in childhood, this can be misinterpreted as the child being spoiled or defiant. Thus, some aspects of FASD are overlooked. Advocacy and self-advocacy for people with this condition is crucial. While that’s true for all disabilities, I’d venture to say it’s even more vital for those whose disabilities are “invisible.”

What is life like with FASD?

Again, it would be next to impossible for me to paint you a “typical” portrait, which is why I lean heavily on research. According to No FASD Australia (nofasd.org.au), basic symptoms may include:

-Learning disabilities and/or difficulties (again, others may not connect this to FASD right away)

-Hyperactivity and impulsiveness

-Inability to connect actions to consequences

-Sensory difficulties/issues, such as disliking particularly loud sounds

-Memory problems

-Social and developmental delays

Can people with FASD be independent?

As with all disabilities, this depends on the person. Independence may be harder for certain people with FASD because of traits like impulsiveness and other neurobehavioral issues. As with other disabilities, people with FASD are often unfairly stereotyped and labeled. The TAB people around them assume they simply refuse to do or be certain things, when in reality they cannot and will not do or be those things. This often leads people with FASD to experience a constant sense of failure, which may negatively influence their behavior and life trajectory. Some people with FASD live in a state of dependence on family and government; others become impoverished or homeless.

Despite this, the picture need not be so bleak. People with FASD can lead fulfilling lives if those around them are educated regarding what they have and what they need. Remember, many cases of FASD involve “invisible disabilities,” so if you are the loved one of someone with it, you must speak up and teach your loved one to speak up. You have options, such as educations tailored to your loved one and an adult lifestyle that accommodates their needs. For example, many people with FASD use memory prompts and clear schedules to help them get through daily life. Like people with certain other disabilities, people with FASD need and depend on routine. They need a support system made up of people who both recognize their needs and nurture their strengths.

Myths and Facts about FASD:

Myth: If you drank during pregnancy, it is your fault the baby has FASD. If you drink while pregnant your baby will automatically have the disorder.

Truth: It is never advisable to drink while pregnant, simply because we don’t know how much alcohol exposure can trigger FASD. However, if you are the mother of a person with FASD, know it is not your fault. You didn’t know specifically what might happen, and no mother worth her salt ever sets out to purposely harm her baby. Remember too, that the effects of FASD cannot always be traced directly to alcohol. In other words, that one glass of wine you had on New Year’s Eve is probably not the reason your child has an intellectual disability or other issues.

Myth: Adults don’t have FASD/you “outgrow” it.

Truth: This is one myth I wish were nonexistent for all disabilities. You do not outgrow FASD. In my opinion, some people may persist in thinking this because they cannot accept manifestations of FASD in adults that they would write off in children. This is unfair and stifles the individual. Adults have FASD and live with it every day. They also have the chance to be independent, productive, and happy if we let them–so let’s let them.

Myth: People with FASD can’t learn/their ability to learn stops at about fourth grade.

Truth: Learning is tough for a lot of people with FASD, and whether you have a disability or not, fourth grade is notoriously hard. You’re reading the blog of a person who failed fourth grade math. This is because the curriculum and learning styles of most schools change significantly from grade four onward. However, learning doesn’t “plateau” then for kids with FASD or any other kids. Kids with FASD may *appear* to stop progressing, but they just need extra support and perhaps different teaching styles. (This is where advocacy comes in, as does the support of things like IEPs, self-contained classrooms as needed, etc.)

Myth: FASD is an excuse for bad behavior. People with FASD could do better if they tried harder.

Truth: This is another myth that boils my blood, because it reduces the person to some annoying oddity who wants and enjoys his or her disability. Nothing could be further from the truth. It’s not that people with FASD don’t want to behave in a socially appropriate way; sometimes they just cannot do it–the same way a person with CP might never be able to walk or speak clearly. Accurate diagnosis, compassion, and support is needed so much!

Myth: People with FASD cannot maintain relationships because they cannot “behave.”

Truth: No; people with FASD do have family members, friends, and even significant others in their lives who love and understand them. Like all people, those with FASD could always use more relationships. Awareness and acceptance makes that happen.

Myth: People with FASD should not have children because the children will get FASD. Anyway, they can’t raise children.

Truth: There is no genetic link present in FASD, and people with it can raise children with adequate support.

Come back soon, readers; I so enjoy sharing these posts with you. 🙂

 

Blog Bonus: We’re Still Relevant, Darn It!

And now a brief message from these sponsors (just kidding, we don’t have any).

Have you ever gotten involved in something, like I did with disability advocacy, and then a few weeks or months or years down the road wondered if you were still relevant? I know I have. Just the other day I was thinking about the disability rights movements of the 1970s-’80s, back before we had IDEA or the ADA or any of that. And I thought, “Well, we have all that now. Most people are not actively trying to treat PWDs as second class, are they? I mean, what if I made all this up because I’m just a bitter person?”

And then I got a timely reminder that you, and I, and all the advocates out there: we’re still relevant, darn it!

This happened while I was killing time and letting the recent post on CP percolate, while watching YouTube. I semi-frequently watch a video series called Messy Mondays. These are created thanks to a college student named Jordan who is a Christian and grew up in the Bible belt. They are funny, insightful, and tongue-in-cheek looks at the Christian subculture.

One such video is titled “The 10 Kids You Meet at Youth Group.” In it, Jordan and his friends go over examples like the pastor’s kid, the kid who’s there to play games, the super-spiritual kid, etc. A lot of people wrote in to comment on types that were left out.

I noticed one person wrote in and said (paraphrase):

“The down syndrome kid. You know that kid who wins games for doing nothing and is always hitting you but doesn’t get called out because they’re special.”

I mean, ugh.

  1.  You at least could have capitalized Down Syndrome, grammar murderer.
  2. What, did you see Educating Peter one too many times? (Horrible documentary, BTW, largely because it shows Peter acting in stereotypical ways, such as hitting people and screaming. You know like, “Look, this is what all people with Down Syndrome do.”) No, it’s not, and those who do engage in that kind of behavior need to be reprimanded, but understood as well.
  3. “Don’t get called out because they’re special?” Well if that’s true, that means the leaders have problems, not the youth group member.
  4. Wins for doing nothing–okay, yeah, I’ve seen that one with other disabilities. Some youth leaders, teachers, etc. believe that in order to make PWDs feel included you have to let them win, or get rewarded without effort. In actuality, this is harmful and only perpetuates pity and stereotypes, so quit doing it.

Look, I’m sure examples of this person exist in some youth groups and other circles, but not everywhere. And if it were just that one stupid comment I wouldn’t be posting. But what got me is how several people *agreed*, saying things like, “Yeah, this kid hit me one time with her 2-pound purse and nobody did anything”, “I KNOW, right?” and even, “Down Syndrome kids are a waste of effort if you ask me.” (Which nobody did!)

My point? Wake up and smell the coffee, advocates. You’re still relevant. I’m still relevant. It’s not 1975 or 1982 or even 1990 anymore, but as long as attitudes like this exist on the Internet and in real life, we’ve got work to do. If a person with a disability is still being barred from anywhere–from church, of all places–we’re not done.

We’re still relevant, darn it! So get out there and be relevant.

Disability 101 Part 2: Cerebral Palsy

Hello readers, and welcome back to class. Today’s topic is cerebral palsy, hereafter known as CP. It’s the disability I have, so in some respects it’ll be easy to write about, but I wanted to go ahead and get this one done because, since it is the one I have, I might otherwise forget. So here we go.

What is CP?

Some people believe CP is a purely physical disorder, mostly because it heavily impacts muscle movement, coordination, and things of that nature. However, it is not purely physical, even if the symptoms themselves are (we’ll get to that in a minute). CP is a form of brain damage. The damage occurs either during or after birth, and is classified as a group of disorders because it can affect people in so many different ways. This is one of the disabilities that is most often referred to as “mild, moderate, or severe,” because degrees vary so much. A person with a gifted range IQ, who uses a wheelchair and has visual issues, could have CP. So could a person with impaired speech and cognition whose limbs are seemingly unaffected. So could a person who can walk and talk fine, but has a very difficult time using his or her hands.

According to cerebralpalsy.org, CP is the most common of all childhood disabilities, affecting 3 out of every 1000 births in the United States (although I don’t know why they call it a childhood disability because it’s not like you grow out of it. I guess they mean, “disability you are born with,” but that doesn’t make much sense either). Ahem.

Diagnosis usually occurs in babyhood, with between 8000 and 10,000 babies receiving a CP diagnosis each year. However, sometimes CP isn’t diagnosed until a child is preschool-age. I myself was diagnosed at two. This often happens because again, CP presents so differently for every person, and because sometimes symptoms masquerade as other things. For example, I was a very stiff baby, which is what tipped off my parents and doctor at first. But another stiff baby might have another disability. She might have a muscular disease, or she might just be reacting to something in her environment.

Are there classical features?

No; you cannot tell CP is present by looking at someone. However, there are different types of CP, and these classifications can help you determine what this person might need from you. For example, I have what’s called spastic CP. Despite the connotation of the word “spastic,” this actually means I’m stiff, not that my limbs are hard to control. I have been disparagingly called “stiff as a board.” When I’m a humorous mood, I sometimes call myself the Tin Lady (as in, Wizard of Oz).

Athetoid CP means the muscle tone is actually decreased; this is where you’ll see an infant who seems like a “floppy baby,” or a child or adult who has trouble controlling his or her muscles. I have seen people with athetoid CP whose limbs move on their own accord, or who have trouble doing things like holding up their heads. Again however, degree is everything, as it is with spastic CP.

Finally, there is ataxic CP. This is the form that most often impacts vision, balance, and posture. For example, you guys might remember me talking about my lack of depth perception and peripheral vision. This is due to ataxic CP. I know, “Wait a minute, I thought you said you had the spastic kind.” I do, but I also have ataxic. You can have a mixed type of CP, and one type may affect you more than the other. I have never met or heard of anyone who fits all three categories but I’m sure it has happened or will happen.

Finally, cerebral palsy can affect just one limb or any group of limbs. Some people have demiplegia, triplegia, or quadriplegia (two, three, or four limbs involved). Others have pentaplegia, which doctors classify as involving all four limbs plus head and neck. Other people with CP experience involvement of just one limb, and still others have forms of hemiplegia, where one side is affected more than the other. I’m hemiplegic; my right side is my stronger side.

CP is categorized much further than this on sites like cerebralpalsy.org, but in order to avoid information overload, those are just the basics.

Are there other medical issues?

It totally depends on the person. CP does not automatically mean increased potential for sickness or a decreased life expectancy. It can, but that is highly dependent on the severity of the CP and how the individual lives and functions otherwise. In other words, if you never exercise your muscles will begin to atrophy and you will experience pain whether you have CP or not. However, some people do have health issues tied directly to CP, such as muscle and nerve pain, visual issues, etc. These need medications, glasses, surgeries, and therapy to be treated effectively.

Can CP be “made better?”

As with most disabilities, there is no cure for CP. There are effective treatments like therapy, but as we’ve discussed, these are not cures and should not be overdone. As my father says, therapy is like fixing a dent on a car’s hood when what you really need is a new motor–but you just have to work with the motor you’ve got. My advice to parents and other loved ones of those with CP is, discuss your options and push for schools, workplaces, etc. to do their jobs in providing modifications the law says they must. But do not focus your entire life on, “If we do this therapy, Karen *will* walk someday” or “If we use this medication, Nabeel will stop having tremors and be able to feed and groom himself.” Maybe so, but maybe not. And if not, that is okay!

With all disabilities but, I have found, especially CP, you have to know what your options are and what the person in your life truly needs. I say this because I’ve been offered a lot of modifications and treatments I really didn’t need, so my parents had to be smart about what to take and what to leave. Later, I had to take over that responsibility. Again, this is true for any disability. The reason I bring it up with CP is because not only are no two cases alike, but I’d venture to say you will never, ever find two people with the exact same symptoms. If you put me next to another person with CP you might think, “Wow, their versions don’t match AT ALL.” There are often similarities, but…well, you get it.

What does a person with CP’s future look like?

Again, depends entirely on the person–and the support he or she is given. Independent living, marriage, children…all those are possible, but different supports may be needed. For instance, I want children but am aware that I will probably struggle with the motor skills and physical stamina needed to care for an infant or toddler. Calling all family and friends! As with most disabilities, group homes, assisted living, etc. are options, not the catch-all solution. Many people with CP, including a former colleague of mine, are now able to have caregivers and other aides come into or even live in their homes.

Myths and Facts:

Myth: All people with CP have cognitive/mental disabilities.

Truth: No. Some do (about 50%, last I checked), but these vary greatly just as physical symptoms do. People with CP can get inclusive educations, learn the things their peers do, go to university, or not. As a commenter on this blog once mentioned, we don’t act like it’s the end of the world if a TAB person doesn’t go to college; why is it such a big deal when a person with a disability doesn’t?

Myth: People with CP cannot get around their communities.

Truth: This myth only exists if you let it. People who let it, such as certain business owners, often say, “Well, it costs money to put in an automatic door/an accessible shower in our hotel rooms/whatever.” Well maybe, but what’s more cost effective and beneficial? Having everybody interact in your community, or locking out a whole population?

Myth: CP is a choice; people who claim to have it are just lazy.

Truth: You’d think nobody would be dumb and bigoted enough to say this, but I’ve heard it. It’s kind of an occupational hazard, and I’d venture to say people with other disabilities have heard it, too. This is more than a myth; it’s a dirty lie and it hurts everyone. Crush it.

Myth: My kid will outgrow CP.

Truth: This is actually a more common one than I originally thought, because some people believe that with the right therapies and supports, CP will largely “go away.” Not true; see above. As with every disability, CP doesn’t cease to exist because you turn 13, 18, or 21. In fact, adulthood is when PWDs may need your support–not your therapy, not your meds, but your love and belief–more than ever because some people still erroneously believe all people with disabilities are kids.

Myth: CP is a burden; I cannot provide for my loved one.

Truth: I hear this more with CP than with other disabilities, although no disability is exempt. Financial issues are real and present, and the lack of services can be frustrating or demoralizing if that’s something you run into. I know–I’ve lived it. But that’s why people with CP, and their loved ones, are here. We’re here to live our lives first and foremost, doing what we can do to make the world better like anybody else. But part of making the world better is speaking up and saying, “Some people need help to reach their full potential; let’s provide it instead of acting like help is bad.”

Come back next week for another lesson, readers! 🙂

 

Disability 101 Part 1: Down Syndrome

Good morning readers, and welcome to “class.” This is Disability 101. In the tradition of my old college professors, here’s a rundown of the “syllabus”:

In this course you will learn:

-Basic facts regarding both well-known and lesser-known disabilities

-Some myths and truths related to each

-How inclusion, independence, and interdependence is being made possible for affected individuals, and/or how it can be made more possible.

Disabilities covered will include, in no particular order:

-Down Syndrome

-Cerebral palsy

-Autism/Asperger’s Syndrome (may be two separate discussions)

-Fetal Alcohol Syndrome Disorder (FASD)

-Muscular dystrophy

-Fragile X syndrome

Any others that present themselves, such as unclassified intellectual disability, traumatic brain injury, blindness, deafness, and so on. You will notice there are more topics listed than there are weeks in August, so be prepared to see more posts than usual. These posts will not be considered “bonus rounds.”

Without further ado, please open your laptops or notebooks and we’ll begin with Down Syndrome.

 

I chose to start with Down Syndrome largely because it is an intellectual disability. In my experience, intellectual disability (hereafter known as ID) is one of the least understood and most maligned disability types in existence. People assume that those with ID cannot and will not have good quality of life and are perpetual children, when neither supposition is true. Let’s examine instead what the truth is.

 

What is Down Syndrome?

Down Syndrome, also called trisomy 21, is a chromosomal disorder that occurs when an individual has an extra set, or copy, of chromosome 21. The extra copy can be full or partial, which may affect the way DS presents itself. According to the National Down Syndrome Society, DS is the most common genetic condition in the United States. It occurs in one of every 691 births; about 6000 babies are born with DS each year. Currently, approximately 400,000 Americans live with Down Syndrome.

Are there classical features?

Yes. Down Syndrome is one disability that is highly visible. Individuals with it have upward-slanted, almond-shaped eyes. They usually have low muscle tone or hypotonia, as well as deep creases across their palms’ centers. Persons with DS also have facial creases or extra skin folds, such as around the eyes. Persons with DS are usually small in stature and may have unusually small features such as ears. However, just because you can easily identify individuals with DS does not make all individuals the same.

Are there other medical issues?

Yes. According to WebMD, about 50% of children born with DS also have heart defects, which can vary in severity. People with Down Syndrome may also have different visual issues such as nearsightedness, farsightedness, or crossed eyes, which can be corrected with glasses, surgeries, and other treatments. People with Down Syndrome often have hormonal imbalances and issues such as hypothyroidism, which can be treated with medication.

Certain people with Down Syndrome may have a shorter life expectancy than is typical. However, again, each person is different. If you have a loved one with DS, don’t assume his or her life is automatically shortened. Instead, work with your doctor (s) to give him or her as much medical support as needed.

The Intellectual Side of Down Syndrome

Ah, now we’re getting into the nitty-gritty. When most people think of DS, intellectual disability is the first thing they think of. They might say things like, “You mean my child is going to be retarded.” Well, first of all, that descriptor is archaic; thankfully, more doctors are shying away from using it. Also, it is vital to note that ID does not equal inability to learn, enjoy academics, or thrive in the world. In fact, many people whose children or loved ones have DS will be the first to tell you their loved ones are smart; they are just smart in different ways than most of us think of it.

According to henryspink.org, most people with DS have an IQ of between 50 and 60, which falls under mild to moderate intellectual disability. However, this number can fluctuate; some individuals have been found to have scores as high as 120. About 1% of individuals with DS have an IQ of 70-80, which is classified as borderline average.

It would be nearly impossible for me to describe what an average education would look like for a child with Down Syndrome. That depends not only on the IQ itself, but how much support and how many opportunities there are for that person. By law, public schools must educate children and teens with DS; whether they do so inclusively and fairly is a toss-up, although positive strides are continually made. To varying degrees, people with DS can read, do math, participate in science and social studies, and do other academic tasks. Many loved ones of people with DS do not classify it as “mild” or “severe,” because they feel–rightly so–that ability is dependent on the person, not Down Syndrome itself. As other disability advocates have said, you are what you learn. If you are taught you are smart, capable, and able to meet others’ needs, that’s what you will become.

Myths and Facts:

Myth: If you are a mother over 35, your child will most likely have DS.

Truth: Although the risk of having a child with DS does increase after this age, children with Down Syndrome can be born to mothers of any age, and they are. Remember too, that statistics are not the be all end all. And, a positive result on a prenatal DS screening does *not* indicate a bleak future for your child.

Myth: People with DS don’t know right from wrong.

Truth: Although some people persist in believing that those with ID have no morals, this is not true. People with Down Syndrome, like everybody else, must be taught right from wrong. They may need help understanding certain intricacies, but they are not prone to criminal behavior, nor are they inherently disrespectful, selfish, or any other negative label you might choose to use.

Myth: People with DS are unemployable.

Truth: People with DS can and do hold jobs and make their own money–if they are given the chance to do so. Fortunately, there has been a movement away from sheltered workshops and segregated employment in recent years. Although people with DS are stereotyped as working primarily in menial jobs, they can do other things. The news is full of stories of people with Down Syndrome who have owned their own businesses, such as a young man named Tim who ran his own restaurant until recently revamping the business to get married. Which brings me to:

Myth: People with DS cannot and should not marry or have children.

Truth: Yes, they can. People with Down Syndrome are attractive (just look at Madeline Stuart, an 18-year-old girl with DS who is also a model). They have sensual and sexual desires just like the rest of us, and they can have successful relationships. Although persons with Down Syndrome and other forms of ID have been forcibly sterilized in the past, it is my hope that we will continue to see that less and less as time progresses. Side note: I disagree heartily with forced sterilizations.

Myth: People with Down Syndrome are always happy.

Truth: No; people with DS experience the same range of emotions everyone does. A lack of happiness or cooperativeness should be seen as natural instead of a sign of “noncompliance” or “behavior problems.”

What a Person with Down Syndrome Needs/What the Future Holds

As with most disabilities, the future of a person with Down Syndrome is up to those who love and support him or her, and are willing to let the individual speak for him or herself as much as possible. If the TAB population relies on worst-case scenarios to give them a picture of DS, we will not progress in our understanding of it.

Students with Down Syndrome are included in the educational system, although the levels of inclusion vary. Let me reiterate: letting a person with DS “visit” or sit in on a class is not inclusion. He or she should be given ways to participate and interact with peers. In other words, yeah, maybe your student with Down Syndrome can’t read and analyze Hamlet, but that is no reason to plunk them in a corner with an alphabet worksheet. Alternatives such as books on tape, condensed Shakespeare, and related activities may be useful.

Be careful when helping adults with DS “transition” from high school into college and beyond. People with DS are not perpetual children; they can and do understand adult concepts if given the time, patience, and specific explanations it may take to communicate them. Although they may have a childlike “cognitive age” or interests you consider childlike, remember that chronological age comes first. If the person with DS in your life is 40, then for goodness sakes, treat them as such. Don’t assume things like, “He frightens easily” or, “She needs help in the bathroom.” It’s demeaning.

Bottom line? Persons with Down Syndrome may need more support than people without it, in terms of living independently, holding jobs, etc. But they *can* do it. More and more people are proving that. We just need to relate to people with DS on their terms. Yes, simplify explanations if you have to. Yes, give them extra time to do things. Yes, work with medical teams to keep them healthy. While doing that though, always remember you are dealing with a whole person, not just an intellectual/physical diagnosis. For as long as they are here, whatever they can do, let’s give people with Down Syndrome the chance to be the best people they can be.