It is, however, an unfortunate fact of life that everyone must clean their bodies and hair, to prevent illness, odor, and social avoidance. Here are some tips to make showering less aversive:

1) Timing: Most people have particular shower times: before bed, just post-waking, etc. But there is no set law that showers have to be taken at a given time each day. For individuals wary of showers, preparing oneself for the act of showering, and then calming down afterwards, can take time, with some needing more time than others. If they need prep time, consider an afternoon or evening shower. If they need calming time, be sure not to force showers right before bed as it may interfere with sleep. Experiment with offering showers at different times of day to see what works best for your child.

2. Getting into the shower. Showers can be a full-on sensory assault for autistic individuals. This may make them fearful of getting into or staying in the shower. If your child refuses to stay in the shower long enough to get clean, try building up to it. On day 1, let your child stay in the water as long as they can without getting upset. Even if the time is only ten seconds, reinforce your child for making it that long, with a token, a dessert, or whatever works as reinforcement for your child. The next night, require that they make it fifteen seconds before receiving the reinforcement, than twenty, thirty, a minute, etc. until they have reached a period of time long enough for a full shower to occur (maybe 8 minutes?). As your child becomes accustomed to the feeling of the water on their bodies and face, it will likely become less aversive and showering will become easier and easier until no reinforcement is needed.

3. Shower Products. Shampoos, soaps, and body washes can be a major issue of contention. They each have their own smells and textures that need to be dealt with, and they can leave your body or hair feeling different, even after they’ve been washed out. Offer as great a variety as you can and let your child choose what works for them. I used to hate the feeling of soap, and in college I found everyone had switched to body wash, which made for a much nicer experience. Travel-sized choices can helps save money while experimenting, as can stores such as big lots, which offer name-brand options at store-brand prices. When you find an item that works, stock up so that you don’t need to repeat this procedure again in a few months when the formulas change. I bought a 24-pack of the conditioner I use so that I won’t need to reassess conditioners for another 12 years or so.

4. Shower Tools: Once you have the item to be spread on the body, you need to find the perfect tool to spread it with. Washcloths, sponges, shower brushes, loofahs and even hands all make good options. Let your child try out each one and pick which is least aversive.

5. Shower Heads: Sometimes the biggest issue is water pressure. If you don’t already have one, consider picking up a multi-option shower head, the ones where you can choose how heavy or light and dispersed or concentrated the water is. When you find the setting that works best for your child, mark it on the head so that it can be set back to this level with ease.

6. Drying: Again, it’s all about options. My mom always used to towel-dry my hair and I hated that feeling. It would get caught up in the towel and the heaviness of a wet towel atop my head was awful. Switching to a hair-dryer helped eliminate that hassle, and I found the noise comforting. Towels can vary in texture and heaviness, so consider trying out a number of different ones before settling in on the one that works best.

7. Routines: Once you find the perfect time to have a shower, and have all your options in place, make it a part of the routine. Using a shampoo designed for daily use can eliminate the confusion between on and off days, and picking two particular days each week when conditioner will be used can assist in making it more routine. Hang a pocket-calendar in the bathroom if necessary to track which days are shampoo or conditioner days.

Showering can be a major battle, but it doesn’t have to be. Providing your child with options, respecting their sensory needs, and building the shower ritual into your daily routine can all help to make the procedure easier for everyone involved.

1. Don’t make assumptions. Ask. Although all autistics have some basic traits in common, there is enormous variation within the autistic spectrum. An intervention which might be a tremendous assistance to one employee could be a burden to others. Provided your language is respectful, most autistics will be very willing to answer any questions you might have about their diagnosis and what they find helpful.

2. During Orientation, or when introducing a new policy, be as thorough as possible.For many autistics, if something is introduced to them once, they will understand it. For others, it will take multiple repetitions. In either case, it is extremely helpful to be very thorough when explaining new procedures or policies. Many autistics have difficulty with troubleshooting or adapting when things aren’t proceeding as expecting. If you review possible contingencies and their outcomes ahead of time, you will save everyone confusion and difficulty.

3. Use lists and schedules whenever multiple steps are involved. Autistics can have difficulty with planning or organization, as well as taking verbal directions. As a result, a printed list of steps or schedule can save both of you time and hassle.

4.  Ask your employee about sensory issues and attempt to accommodate their needs. Sensory issues are very common in autistics, particularly relating to sound, light, and smell. Switching from flourescent to incandescent light bulbs, encouraging other employees to use moderation when applying perfume, and allowing, when reasonable, an employee to wear head-phones or other noise-blocking devices can go a long way. When uniforms are required, be as flexible as possible about the materials and cut of the attire. Some autistics cannot wear clothing with seams, or that fits too tightly or too loosely.

5.  Use exact language wherever possible. Many autistics are very literally minded. Phrases like “be with you in a minute”, “I’ll call you in a little while,” etc. can be difficult for autistic employees to understand and may lead to confusion.

6.Communicate via email or memo, rather than over the phone. Many autistics have difficulty with phone conversations. Auditory processing issues can make messages sound garbled or cause misunderstandings. Social cues which indicate when to speak, or when sarcasm or metaphoric language are being used can be misinterpreted or missed entirely. Also, many autistics are much better communicators in writing, when there is less time-based pressure, than speaking. As a result, you’ll have an easier time communicating, and receive higher-quality responses when using email.

7. If the employee is doing something annoying, tell them explicitly. Autistics have difficulty interpreting social cues, and will require more than a frown or a raised eyebrow to communicate disapproval. It is likely that the employee will not be aware that what they are doing is irritating to others, and a quick, blunt conversation will ensure the situation is rectified quickly and easily.

8. Maintain confidentiality. Although you might think it would be helpful to others to know of the employee’s diagnosis, you should not take it upon yourself to reveal this information to others. Allow the employee to inform his co-workers at his own pace and on his own terms.

9. Understand that social situations can be very difficult. Office parties, gathering at the bar after work, and even group lunch breaks, which are enjoyable and re-energizing for most employees can be draining, if not impossible for some autistic employees. Attributing avoidance of such functions to unfriendliness or lack of team-spirit is a mistake. Many autistics find it much easier to socialize in one-to-one situations than with a large group.

10. Be respectful of routines and rituals. A defining characteristic of autism is a desire for routine and order. You may notice that an employee always performs the exact same activities in the same order every day before setting down to work. Whenever possible, wait until that ritual is completed before beginning a conversation or providing instructions. This will ensure that your employee is able to fully attend to what you are saying rather than focusing on the disruption of their routine.

Autistic employees can be a major asset to your company, and taking the time to find ways to help them perform at their maximum potential can reap incredible benefits for your company.

*The word autistic in this article is used to describe individuals with both Autism and Asperger’s Syndrome, which is a form of autism.

(I am aware that Asperger’s Syndrome is leaving the diagnostic vernacular, and will soon be a passe phrase. You can see my thoughts on this change here. However, there are times when it is significant to discriminate between the forms of Autism Spectrum Disorder, because significant differences exist. In the case of physical difficulties, this distinction can be important. A recent study showed one of the only key differences in individuals with AS and those with HFA was the amount of motor and coordination difficulties.)

Two key areas within the physical subfield are particularly troublesome for me:

• Clumsiness: A quick survey of my lower left leg revealed six bruises, two of which house dried blood. My right leg looks relatively similar. Of course, we’re in a time of year when everybody has bruised legs; there is snow and ice all over the ground, and people are naturally having difficulty staying upright. But none of these marks are the result of a fall in the ice. In fact, I think I might have an easier time walking on snow than on land because of the greater prorpioceptive input from my foot passing through the ice. All of the marks I have were acquired walking indoors or on grass, and either bumping into something or falling down. Least year I made the mistake of going to my doctor with shorts on. When I explained that I had gotten so marked up walking into things, she called in for a child-abuse evaluation, telling me that “No body is that clumsy”. In the end my mom was cleared and the doctor was forced to simply caution to “Watch where I was going.” Because I hadn’t thought of that one before.
• Mirroring: I wrote awhile back about my previous history and success in karate, and my surprise that it did not translate into success in Tai Kwan Doe. I then came to the realization that the one significant difference in the way the two were taught was that in karate the students all faced the same direction as each other and the instructor, while in Tai Kwan Doe, we stood in a circle, all at different angles and facing the instructor. The impetus for this post, however, came far more recently. Earlier in the week, I was asked on two different occasions by different people if I was left-handed, which I’m not: In lab when I set up the hemostat in the wrong direction, at the triplet’s house when Aaron was teaching me how to hold a hockey stick and his dad noticed I had my hands inverted. In both cases I had been facing the demonstrator, rather than along-side them. When I corrected this, I immediately noticed my error and was able to adjust accordingly. The conclusion was simple: while I can imitate others, I cannot mirror them. Or rather, I mirror them incorrectly, winding up inverting all the actions.

I find it interesting that this aspect of autism is, for the most part, ignored in the DSM, versions past, present, and future (aka the proposed DSM-5 described here). Perhaps because these difficulties would be difficult to quantify (how does one measure excessive clumsiness?), or perhaps they are only present in a certain percentage of autism cases, or because they are considered a co-morbid deficit rather than a central one (this explanation makes the most sense to me at least).

Further thoughts, comments, or anecdotes?

At any given point I will have a particular repertoire of tics. These are the ones that will show up the most often during that particular period, though there are occasions where you’ll see the entire history of my TS in one five-minute interlude. These are relatively rare, and are usually followed by one of the old tics entering the newer repertoire.

My current collection includes five base tics, two “vocal” and three “motor”. The two vocal are clearing my throat and sharply intaking breath such that the tongue to roof of mouth suction creates the “Hut” sound. (The “hutting” is a crowd-favorite, as it supplied endless fodder for lame one-liners like, “What’d you see in the forest?” and “What dwelling is larger than a tent but smaller than a cabin?”). The current motor tics are touching my shoulders, tapping a surface in patterns of three, and snapping or stretching my fingers in patterns of three. Old tics which pop up again for a brief visit on occasion are sniffing, adjusting my jaw, blinking patterns, and tapping other people’s knees/notebooks/shoulders in patterns of three.

I go through frequency/intensity periods with my tics, and the patterns do seem to be weather-connected, with colder days seeing a higher frequency. On an average day I’ll experience roughly 100 tics an hour, with fewer during the mid-morning to mid-evening and up to ten a minute within the first few hours after waking and before sleeping. I also go through periods where I’ll tic twenty times a minute and periods where I might not tic twenty times all day. I’m still attempting to trace back and determine what factors impact the frequency.

Tics are divided into three parts: the urge, the action, and the repercussion. Sometimes the urge and action are entirely intertwined, so that I won’t know I needed to tic until the tic is already in progress. Most of the time, however, there is the knowledge that I have to perform a particular tic, with a conscious pause between when the signal to tic arrives and the tic is physically carried out. If the interchange is not instantaneous, there is the repercussion. This is a feeling of tension/pressure that builds and builds until it is the only thing I can think about. Sometimes the latency period between the signal and full pressure is a matter of seconds, and sometimes it can be as long as seventy minutes (which all of my professors of 75 minute classes are quite familiar with at this point). If I let the need build to maximum pressure, the release is tremendous with an incredible slew of tics occuring one after another for what feels like an eternity but is typically no longer than thirty seconds.

Tics can be aggravating, to both the performer and the observer. They can be frustrating, annoying, and limiting. But they can also be amusing and are an excellent diversion technique. Having Tourette’s, I get to see the worst in people- their impatience, their tempers, their ignorance, and their fear. But I also get to witness some of the best, when people laugh with instead of at, when I get shown compassion that isn’t tinged with pity, and when others take the opportunity to educate rather than join in taunting an easy target. Having Tourette’s isn’t all sunshine and rainbows, but it certainly isn’t a thunderstorm either. If I learn as much from year two of living with the disorder as I have from year one, I should be a sage by thirty.

I don’t think the current AS/AD split is working. The two categories manage to be simulatenously far too similar, leading to struggles over who to put into which, and yet also so different, such that the terms “Asperger’s” and “Autistic” connote two very different presentations. But I don’t think the solution is to give up on trying to categorize the types of autism. Instead, common sense needs to be utilized to determine a practical way to distinguish different forms of autism from each other.

Here are some ways we can split:

• Family History: it seems pretty clear to me, at least, that some families can trace spectrum traits up the family line. It is possible that in these cases, the individual who finally fits enough criteria to get an autism diagnosis, might not have any other root cause of disorder exhibition than inherited traits. For example, my grandmother has sensory issues, food issues, limited interests and poor social skills. My father has a “special interest”, food issues, impulse control and anger management issues. My brother and I have ASD diagnoses. I think in these cases, it might only be a matter of how extreme each “symptom” is. However, in other situations, an autistic child is born into a family with no history of spectrum traits. These are likely two different forms of autism.
• Age of symptom onset: Many individuals with autism were clearly autistic from birth. Seemingly from when they left the womb, they didn’t want to be touched, cried all the time, and didn’t seem interested in faces or people in general. Others seemed neurotypical until between fourteen and twenty-four months, when spectrum traits began to appear and then never left. These two different situations can even occur in the same family such as with the twins vs. the younger son at Everyday Adventures. Autistic from birth vs. later-onset are likely two different forms of autism.
• Presence or Absence of Food issues: I do not endorse the notion of “leaky-gut” which anti-vaccinists are quite fond of. But it seems clear to me that there are some autistic individuals who cannot tolerate gluten, casein, lactose, or food additives, or for whom the presence of these ingredients can cause erratic behavior. There are many autistic indivuals, however, that have no issues with food, who have regular bowel movements and whose behavior is totally unaffected by diet. These characteristics might be indicative of different forms of autism.
• Speech Capablities: Some autistics have no issue creating new, spontaneous phrasing, but cannot participate in a typical conversation. Some use scripting and echolalia to communicate but can stay fully on topic. And some produce no speech at all. Perhaps these differences are also indicative of different forms of autism.

There are probably hundreds of other ways to divide individuals on the spectrum into different groups. These were just the first four which immediately sprang to mind. What makes these divisions better is that they can be practically utilized. Interventions which will help autistic individuals with no speech will likely be unhelpful for individuals with full speech capabilities but poor social skills, who will need interventions that won’t help those with scripted on-topic speech as much as another therapy geared specifically for them. So how nice would it be to find a center which is specifically geared to help with your (or your child’s) particular communication issues, rather than a particular nearly-arbitrary diagnostic category?

Maybe this is what the board of the DSM is thinking. They tend to go through cyclical periods of splitting and lumping. Perhaps this revision is re-lumping so that the next edition can re-split along practical lines. And perhaps once the re-split occurs, we will have the technology needed to begin to sort autism out a bit better- a way to examine brain physiology and say, for example, “Individuals with and without a family history of autistic traits have a similar presentation and therefore should not be categorized separately” (or the opposite might be found. We really have no possible way of knowing at the moment).

Once we know how many distinct forms of autism there are, and what the hallmark of each of the separate types are, we can begin to formulate specific interventions which are geared to helping the members of each particular group live up to their full potential.

Autism has been, naturally, receiving a great deal of focus in various research communities. But it seems the more questions we tackle, the more crop up. One particularly sticky questions is, “Should Asperger’s and Autistic Disorder be considered: a)variations of the same underlying disorder, b) two disorders on an “autism spectrum” or c) two entirely different disorders?”  Each of those answers has its own supporters who have their own arguments as to why their answer makes the most sense. But, really, we don’t have much of an idea.

The first area of interest is cause. Obviously, no one knows what causes autism, and the answer is likely far more complex than we can even consider at the moment. However, there is a  known genetic component. Based on the fact that AD and AS often appear within the same family (mine and statmom‘s, for example), it seems possible that the two share a common gene. It may be then that environmental factors determine whether the eventual presentation is consistent with an AS or an AD diagnosis. But even this is still unknown.

Another area of interest is anatomy. Are AS brains different from AD ones? This would seem like it would have a quick, easy answer. Scan some brains, take some measurements, and presto, an answer is produced. But reality is more complex than that. The differences between NT brain and autistic ones are proposed to be differences in connections and in transmission of signals. With current technology, we can’t measure these sorts of characteristics in living humans. We can look at post-mortem brains and at animal models, but neither can supply exactly the kind of data needed to hash this question out. Seeing as the differences between AS brains and AD brains, if they exist, are likely far more subtle than those between autistic brains and NT brains, we’re likely looking at an additional two decades of research before we can really begin to answer this question.

And finally, there is the issue of intervention. Do those with an AS diagnosis respond differently to therapies like ABA or Floortime than those with AD? What about in the medication realm? Or diet? This is a question we have the technology to answer, but not the fore-knowledge. Before we can tackle this one we need to make sure we have the right individuals in the right groups, i.e. we need a way to exactly distinguish between AS and AD. And until we know which genes or physiological differences to look for, the best we can do is guess.

The solution to this, is not, however, to combine the two categories until we have a better understanding of the differences. If the two aren’t separated diagnostically, recruitment for research will be further complicated and finding answers will only take longer. The solution might be, instead, to find new ways to distinguish between the “autisms,” ways which the DSM is currently not using. We can separate individuals with an ASD by these criteria, do the reseearch into the differences and similarities between and across categories, and from there, rebuild more meaningful diagnostic categories.  In my next post, I will discuss what these potential distinguishing features could be.

I am an individual with Asperger’s Syndrome. I have a tested IQ in the upper 140′s, and I was the valedictorian of my 600-person class in high school and am in the top 5% of my selective liberal arts college. I can have a conversation, hold down a job, and live independently. However, I have strong sensory sensitivies (particularly to noise and certain consistencies), immense difficulties in meeting new people and making and/or keeping friends, and I cannot read facial expressions, determine if I am annoying or bothering someone, or know when to change the topic in conversation. My thought patterns differ strongly from the general population, and my opinions on many issues are not in alignment with the majority of the population. I have poor hand-eye coordination, am hopeless with a scissor or knife, and have nearly illegible handwriting. I have severe anxiety over meeting new people or going new places. I cannot enter an airport, attend an indoor concert, or drive a car.  The interventions which help me are anti-depressants, noise-cancelling head-phones, being allowed to type everything that needs to be handed in, doing altenative gym and art classes which are based on learning and writing about history and technique rather than participating in the actual activity, having a full explanation of what to expect from a new environment, and direct explanation of social norms and appropriate and inappropriate things to say and do.

Carl, my brother, has Autistic Disorder. At the age of 6, experts told my parents he would never drive, have a girlfriend, live independently, hold down a job, or graduate high school. They would be lucky if he was ever capable of having a conversation. He repeated first-grade twice. From first to sixth grade he had daily resource room, occupational therapy, physical therapy, and speech therapy. In midle and high school he was enrolled in remedial math and english, and continued to receive physcial therapy. He attended extra-help every day after school from the day he started middle school to the day he graduated high school. In college, he received adapted exams, a scribe, and was assisted with all of his research papers and essays. He works at a cashier at Wal-mart, and will likely never be able to directly apply his degree by working in an office. He lives with my parents, and although they are working on independent living skills, it is now known if he will ever live alone. My mom still needs to remind him to call his friends to hang out, and he has not made a new friend (of the variety that you see outside of the environment in which you met (i.e. class, work, etc.) in at least a decade.

Carl and I are both high-functioning for our diagnostic category, yes, but we are also useful examples. The interventions which helped Carl, such as resource room and extra-help, would have held me back. Those which helped me including a gifted but socially incompetent classroom environment would not have been navigable for Carl. If you were told Asperger’s, you would probably expect the latter to be effective. If Autistic Disorder, you would likely expect the former. If you were told simply ASD, you would be left with no idea. The term is simply too broad to have any useful meaning.

Still to come:

-The research issues which will arrive from removing distinctions.

-A more precise, more useful classification of individuals with an Autism Spectrum Disorder

Author: Jeannie Uhlenkamp

 Cover: A bit conspicuous (but then again I might not have picked up the book at all if it wasn’t), and a little childish (cartoon characters on the cover are a bit much). Also, “Teenager on the Autism Spectrum” would have been a better title than “Teenager with AS” because the latter seems to exclude Kanner’s Autistics, who could also benefit.

Foreword: About the Foreword, forewarned is forearmed. If I were giving this to another teen on the spectrum, I would take the foreword out. It is targeted to the parent/professional giving the book and not the teen reading it. As the receiver, I might take offense to this foreword.

Actual Text: The book is written in a question and answer format. After each answer, the main idea is listed along with discussion questions.

Pros

-Defining phrases which are not explicit/definitive ( ex.”likes you more than a friend,” “beat yourself up”, “two-timing”,).

-Very concrete suggestions (ex. after writing “apply deodorant several times a day at school” it adds the not-so-obvious to Aspies “in the nurse’s office or bathroom”). I imagine the book was tested on an audience of spectrum teens, and their feedback was used to clarify any potentially confusing or misleading lines.

-Although addressing some spectrum-specific issues (ex. Will my sensory issues interfere with my ability to date?), the book goes out if its way to cement the idea that many of the issues facing Aspies are actually faced by all teens. This makes the odds of success seem a bit better.

-Unlike many books targeted towards individuals with Asperger’s, this one does not make the assumption that all Aspies are male. Questions from males and females are fielded, and a male and female “dating-expert” alternate providing answers.

-I really liked the answer to the question about sensory issues and dating (I would consider it my biggest obstacle in the dating world). The book mentioned ways to bridge the issue with a date, accommodations (like taking outside breaks when visiting the mall), and alternatives (like hand-holding instead of hugging).

-I also liked the fact that they addressed the unpleasant but true fact that some men (and perhaps women) will lie about love in order to have sex . Two acquaintances of mine were proposed to, slept with, and dumped the following week, and it’s an important thing to watch out for.

Cons

-The discussion questions and summaries after each point are excessive and distracting. A more useful option would have been to place a section at the end of each chapter which listed the main points from each answer and several discussion questions.

-Some of the definitions are a bit condescending and unnecessary. Most teens with an ASD, for example know the meaning of the word “accommodation”.

-I felt some issues were left under-addressed or ignored completely. For example in the “What should we talk about section”, there was no mention of special interests and the “Aspie-monologue”.

-Some advice I thought was rather poor. For example in response to, “I made a special meal for my boyfriend and he didn’t acknowledge it,” the book suggests that the cook was not allowing the boyfriend to have his own feelings or be free around her, and it was her issue, not his, that he didn’t respond. This answer really seemed way off the mark to me.

-Some things certainly could have been explained better or more specifically. For example in the “My girlfriend wants a special song and I don’t want one” question, the response was that some girls like special songs so you should let her pick one. It would have been better to explain why a special song is important to people (as a reminder of the person, a secret, or a connection to a specific shared event, etc.). Also broad statements like “Make sure your body language lines up with your verbal language” should have been supplemented with a list of body-language meanings, even if they were given in a reference section at the back of the book.

-The book only mentions/addresses heterosexual relationships. It wouldn’t have taken much additional effort to include a few pages addressing issues specific to queer adolescents on the spectrum, or, if this were not a possibility, to have a few of the general questions be written by queer teens.

Overall Rating

I would give this book 2.5 to 3 stars out of a possible 5. I’m glad I found it on a bargain table, as I do not believe it is worth the full-price of $20. Despite the title, the book was not truly a book written for Aspies, but one which would be helpful for the general population. Books written by individuals on the autistic spectrum, or which at least include personal stories written by individuals on the spectrum would be far more useful. The author suggests using this book as a currciulum to be studied by parents and teens together. A better strategy might be for the parent to read the book first, post-it note sections which might need additional clarification or input (for example, a “Let’s talk about this one” on the section on masturbation so you can discuss house rules or religious/moral views which have an influence), an the offer that the teen can feel free to ask you any questions or share any thoughts which arise while reading the book. This makes the book less of a chore and more of a reference/resource.

Other Resources:

How Rude Guide to Dating, a companion to the awesome How Rude that I reviewed last year.

Autistic Guide to Dating ,

Preparing for Life 

 Autism-Aspergers and Sexuality

Growing up on the Spectrum

 Asperger Download 

Freaks, Geeks, and Asperger Syndrome

So I thought I would share with you an event that happened today that gives me hope.

I was at a friend’s house watching the newest Star Trek film (the one with the Spock-kiss and the adorable young Chekov). There were four of us gathered, the other three being rather close friends of mine. We had reached the scene near the end, which has Admiral Pike sitting in a wheel chair being pushe around by an assistant. I wasn’t even one processing the scene when I heard the rustle of agitation from the couch across the room. When I asked what the fuss was over, one of them pointed out that several centuries in the future physically disabled people should not still have to rely on assistant-propelled wheelchairs to get around. With all the other inventions, there should be a strong focus on making sure we’re creating technology to improve the lives of all people, including the disabled. There were grunts and nods of agreement from the rest of the couch.

None of those friends are physically disabled, or even have close relatives who are. However, even without a direct personal connection to the topic, they remain aware of and passionate about raising interest in improving the lives of people with disabilities. And that gives me hope.

Here are a few other posts I’ve written about Events or People that Give Me Hope:

• “The Break Room”
• The Letter
• My Brother

Last week (my school) College’s service fraternity (name) raised over $7,000 for the Autism Outreach Center of (region). This was quite a feat, and I applaud them for it. However, I take issue with the banner displayed at the Dance-a-Thon which could be classified as misleading.

Before I address the poster specifically, here is a bit of background on autism. Autism is a lifelong developmental disability that is typically diagnosed before a child’s third birthday. Autistic individuals have difficulties with communication and socialization and often have sensory processing and attention problems as well. Many use repetitive movements to calm themselves and require a precise routine to complete life tasks like bathing, eating, and going to sleep. Roughly one percent of the population exhibits an autistic spectrum disorder which includes Asperger’s and PDD-NOS.

The largest sign at the fundraiser had the Dance-a-thon’s Slogan which went something like: We have to SHAKE it up because a cure may be just around the corner. This reflects the title of the cause, “Students Helping Autistic Kids Excel.” The issue is not with the clever title, but with the use of the word “cure”. Autism is incurable, not because a cure hasn’t been found, but because there is no possibility of a cure. Autism is not a disease like cancer or pneumonia, but a distinct neural anatomy. The brains of autistic individuals have structural and functional differences from those of non-autistic peers, and no amount of vitams, chelation, or hyper-baric oxygen treatments will change that. Moreover, when surveyed, most parents of older autistic children say that would not want to “cure” their child of autism, and the majority of autistic adults would also declare that they were not interested in a “cure.”

The fact that a “cure” is impossible and unwanted is not a reason to stop fund-raising for SHAKE however. It is merely a reason to shift the focus away from the scientists researching an impossible cure and onto autistic individuals and their families that do need assistance. Instead of donating in the name of autism so that a cure may one day be found, choose one of the following reasons to donate:

-so an autistic child who cannot speak can be supplied and taught a different way to communicate

-so an autistic adult who has difficulties with blocking out loud sounds can be purchased

noise-canceling headphones

-so that videos designed to teach autistic adolescents social skills can be offered as a resource

-so that workplaces can be developed that can minimize the challenges to tap an autistic employee’s full potential

-or any other methods which will improve the lives of autistic individuals.

The Autism Outreach Center of (region) fulfills (club)’s mission of helping autistic children excel. But this goal of finding ways to help children with autism to reach their full potential should not be confused with developing a “cure.” Autistic children will become autistic adults, and by donating to SHAKE you helped ensure they have the supports they need to succeed.