Autism Advocacy – Some ideas to get you started

autism ribbonI have been rather fortunate to be able to write for not only my blog, but also some pieces for several other blogs as well. It turns out that writing is something that I rather enjoy and I can even be proud to say that I do quite well.

It occurred to me though, that not everyone is a great writer… or comfortable with public speaking… but that doesn’t mean that they can’t be a great advocate. Some people find some great ways to advocate while others still struggle to find what works for them.

So I thought I’d put together some thoughts and ideas in ways that you could help be the advocate you really want to be even if you have no formal training or previous expertise.

Every day life

Probably the most recognized and frequently used method for advocacy is simply to live life with Autism or with a child that has Autism. You’ll find yourself explaining it to friends and family, you’ll find yourself correcting others or volunteering information when people ask… sometimes you might even have to explain yourself or your child in a public setting if something embarrassing happens.

When you live it, you advocate it simply by walking out your front door.

Don’t be afraid to answer questions, don’t be afraid to offer information. You don’t have to have all the answers, just your own experiences. Explain how it’s not the same for everyone but you can offer your own knowledge on the topic.

People are very receptive, people are often very willing to learn. You don’t have to advertise it but don’t hide it either. When someone shows an interest, speak up.

Wearing Autism Merchandise

Wearing something on yourself is not only a subtle reminder to people but can be a conversation starter. There are a lot of choices, some people even opt to get a tattoo!

What ever it is you do, don’t go overboard. The last thing you want to do is annoy people with it. So keep it smart, keep it clever and even classy if you can. Funny is good too but can be offensive to some if you’re not careful.

Ultimately, so long as you’re not annoying anyone… do what ever looks good on you.

Volunteer

Most charities and events are non-profits… meaning that they don’t do what they do to make money, they do it to fund research or support families.

That means that they could really use the help, since they have no extra money to pay people. And usually it only involves and afternoon or just a few hours but your help would be invaluable.

In these instances, I like to think of it as the worker bee scenario.

Events, such as concerts, walks, bbq’s, etc take a lot of people to pull off properly. Whether it’s flipping burgers, getting people’s names… what ever.

Each and every little job is not only important, it’s necessary… and if they can’t fill those spots, the entire event could be in jeopardy.

Your help, whether big or small, for hours or days, is a big part of it’s success. If you can’t afford to donate, if you can’t be a public figure… just pitch in and help out. It’s needed more than you know.

Local Support Groups

Every community, big or small, has at least one local support group. Those groups usually consist of people with valuable information that you can learn from but there’s often people there that have no information, that need information… that feel quite lost and alone.

Someone at that meeting will likely step up and help those people out… that someone could be you.

You don’t have to pay their mortgage, just help them to realize that they’re not alone. Give them some friendly advice, a shoulder to lean on…. take an hour or two to be a part of a team.

You could learn, teach and grow, all the while making friends and maybe even new friends for your children.

Donate

So maybe you don’t have a lot of time but you are able to muster $10 or $20 here and there… donate it. Keep the receipts for your taxes.

Charities do some amazing work but they don’t do it all on their own. They need donations from people like you and me to fund the work they do.

Also, no matter how hard you have it, there is always someone or an entire family out there that has it worse. Those people struggle far more than you or I could even imagine and they need support far beyond what you or I could give them as individuals.

That’s where charities come in. They pool those donations and build valuable support for those families using the donations from us all.

You don’t have to donate hundreds, every little bit helps.

Take part in the events

I mentioned volunteering to help events run smoothly but it’s also just as much of a help to actually take part in the event… like a walk or fundraiser.

The AutismSpeaks Walk for Autism events have proven very successful in raising donations as well as general awareness all over the world. And all you have to do is walk.

Several other charities and even just local businesses and people right in your own city hold events all the time. Find them, get involved. You don’t have to work if you don’t want to. Just be there.

In fact, you don’t really even have to be there. Help get the word out about them. Tell friends, post to your social networks…. if you get 2 other people to take part in it, you’ve doubled what you could have done just by being there yourself.

If you do get 2 friends to do it and do it yourself too… well, you can see how something relatively small can grow to something very big and very worthwhile very quickly.

Make up something, do what you do best

As @OperationJack says: “Whatever you do best. For me, unfortunately, that requires running waaaay too much.” He’s a marathon runner. When his son was diagnosed with Autism, he decided to run to raise awareness as well as donations. He ran over 61 marathons in 2010!

Another Twitter member, @invisaWriter suggested: “if you know how to plan a killer party you could do fundraiser dinners, or maybe you can organize boxtops for edu. collections”…  not a bad idea!

Use your strengths… even if what you do has never been used for advocacy or fund raising before, try to put some thought into it. You can make it happen!

We’re all equals

I often marvel at how public speakers can travel the country, helping people all over…. or at book writers who can produce amazing pieces of literature that informs and even inspires.

The truth is though, when it comes to being an advocate, we’re all equals.

From talking to a neighbor about Autism to telling the country on national television, we’re equals. We do the same thing… we inform. We have the same purpose, to inform.

The only number that is important to an advocate is 1. If you can inform 1 person, if you can open the eyes of just 1 person, if you can make just 1 person recognize the difference…. if you can inspire just 1 person to want to make a difference…. you’ve done your job.

Whether you write, speak, walk, donate, volunteer… what ever it is you do, your goal is to reach out to 1 person and have them understand.

If you can do that, do it again and again and again… always aim for 1. Before you know it, you’ll have reached hundreds, maybe even thousands.

Ideas from you

I asked this on several networks, here are some of the responses I received.

Sometimes the most effective thing you can do is just be 'out there':
live your life openly, don't try to hide it or be ashamed of it.
It is what it is. You can also give moral/financial support to
others who can go out and speak, write books, etc.

Answering people's questions as they are asked. Wearing Autism Awareness
stuff, my brother got a tattoo to help raise awareness and has become a
conversation starter...

I've been helping make a local Asperger Support Group for Adults and
Children become a 501(c)(3) organization. A lot of work, but it's so
rewarding when we see the families we help!!

I agree, to speak up when people ask questions, to tell people about your
journey. I have been amazed and overwhelmed how people want to listen, get
involved and even donate money to try to help my son be able to speak! I
used to lock myself away and at one stage became very isolated and
defensive. I turned my life around when I took positive action to raise
awareness of autism and what I'd been going through, people all of a sudden
became understanding, supportive and encouraging! Search for Time to Talk
Liam on Facebook to see what ive been doing. People don't understand,
unless you tell them, it's just not possible for them to understand
without you telling them. I'll keep speaking out for my son, until the day
he is able to speak himself! And even after that too probably!!!

I'm an autism advocate in that I ensure that my daughter gets treated like
everybody else, no matter what I have to do. :)

If there is no local clearinghouse for info on ASD and how to handle,
start one.
Please feel free to share your ideas as well!
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Vaccine Math

vaccine mathAs you may or may not know, I try to avoid this topic but sometimes, for the health of those that are unable to protect themselves, I feel the need to speak up.

Recently I read a news article about how the “Vaccine Mistrust Spreads To The Developing World“, where obviously a news story from a place like Afghanistan can be completely accurate or a total farce. I have no way of verifying any of it.

However, it is very concerning and down right scary to think that people would be choosing to brave Polio than take the (unfounded) risk of Autism, or any of the other associated risks of being vaccinated.

(I included a link to the Polio wikipedia page because I think it’s important to take a minute to recognize just how devastating Polio can really be)

Vaccine Math

Now, this isn’t exactly math so much as a comparison but just follow me on this for a moment:

Your options:

  1. You know that vaccines prevent X, Y and Z… and despite the fear that it may cause Autism, you get your child vaccinated.
  2. You deny vaccinations for your child and now risk contracting X, Y and Z… and despite the fear that it may cause Autism, your child could STILL be Autistic.

Summarized:

  1. Your child may become Autistic.
  2. You now risk contracting X, Y, Z and becoming Autistic PLUS you also put babies, children and others at risk of X, Y, Z that are not yet or unable to be vaccinated.

Outcomes:

  1. A child that may become impaired/disabled, with a possibility for life long dependence on a guardian/care provider.
  2. A child that may face illness, life long health issues, neurological impairment/disability, disfigurement, paralysis, death… PLUS, you also put babies, children and others at risk that are not yet or unable to be vaccinated.

The Logic

To me, the logic is pretty straight forward.

I’m not saying that I don’t recognize the rather questionable ingredients that are used… I’m not saying that vaccines couldn’t be safer.

However, to not vaccinate for fear of Autism really makes no sense to me at all. Mostly because even non-vaccinated children can be Autistic. But also because of the HUGE RISK in doing so.

And it’s not just your risk. You put others at risk as well. A baby may not be able to survive a battle with vaccine preventable illnesses… people with weakened immune systems may not be able to survive them either. They are either not yet vaccinated or unable to be vaccinated. They depend on you and I.

Safe Vaccine Advocacy

Being pro vaccine safety is entirely different than being anti-vaccine.

If you push for safer vaccines, I’ll support you. Even vaccine makers can admit that they could be safer.

Safer schedules? I’m no scientist. I can find articles arguing back and forth, from doctors no less, so I’m not in a position to say but I don’t question it so long as the vaccines are still given.

I’ve written about this before, I’ve also taken a stance earlier this year and this post is an extension of that stance.

Not saying something might mean another innocent baby being infected with whooping cough, or further measles outbreaks.

Don’t react emotionally, don’t base life and death decisions on a Youtube video. 

Do the math for yourself and ask yourself, what risks are you really avoiding and more importantly, what risks are you really taking?

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How my wife planned the perfect birthday party

My son’s 6th birthday was the first birthday that involved friends from school, not just cousins and other family members. This meant that there would be other children there with varying severity levels of Autism as well as some children that had no special needs at all.

This presented a unique problem. How do you keep excitement up and keep it under check at the same time?

The Location

bday 6 location

Can you get more perfect?

The first challenge was the location. Cameron wanted his birthday at home where he’s comfortable, all of his toys and games are and he can feel like people have to come to him. That’s actually pretty important.

However, it’s not very practical. First, our house is not that large and it’s not that clean. Cleaning it before hand and afterwards as well is a daunting task on top of the rest of the preparations… and if anyone decides that they’re not in a rush to get home, we’re stuck with them. Not that we mind, we love them all dearly… right?

It turns out that in town, there is a very large park with a playground, water park area and lots of land to play around in… but it’s always crowded. That wasn’t a very good choice either but, outside of town, there was an identical park only smaller and it was along side a lake, which meant beach area. So, playground, water park, some space to play in but not as much and a beach… to top it all off, literally, near the water’s edge but not too close was a roofed in area where we could sit, organize and even play. This little area was surrounded by three picnic tables.

Best of all? The park is almost always empty, or close to it. Being outside of town, it was rarely used… even on hot days.When we got there to set up, there was only 3 other people in the entire park.

The Food

bday 6 food

Gluten free - looks great!

Being that there were special diets for some, not for others and pretty much everyone had things to do on their own, my wife planned the party to run from 1pm to 3pm. This meant that people could eat lunch, come to the party and be home before dinner.

Some people always tend to miss out, or get a bit hungry while there, she made sure to bring a couple of containers with grapes, strawberries, cheese, gluten free crackers, a bit of lunch meat and some chips. Not all of it was eaten but quite a few people did snack so it worked out perfect.

As for the cake… she made a small’ish cake the week before, as it was the first cake she had ever baked. She bought the ingredients and mixed it and made it herself, first time ever. And not just that, it was gluten free… even the icing.

So it went well but not perfect but that’s why she did it… to practice. Then, the day before the party, she made two of those cakes, put them side by side, iced it all and put on some decorations.

For the actual design, she used Photoshop to put together a very nice design with Cameron’s favourite Mario characters, printed it at Walmart, had a bakery print it onto edible rice paper and stuck it on top of the cake. Presto… a very lovely, very yummy looking cake. It was perfect.

The Games

bday 6 games

Fun in the water

We had one child that preferred to be on his own although we did catch him playing one on one with another child for a little while, some children were all over the place and from time to time, some children needed a little alone time.

This can make organizing games very difficult and we even had one adult at the party ask us why there were no games.

Here’s the thing… at a park that has a beach, water park, playground and lots of room to run around.. you don’t need games. You can have a few children racing to the playground and back, a couple others playing tag and a couple others playing cars at a table. Everyone’s happy!

Did any of them miss games? Were they upset they didn’t get to pin a tail on a donkey? Not in the slightest.

Cake and Presents

This turned out to be quite tricky but for the most part, the adults all backed up and let the other children crowd Cameron as he opened his presents. They all got to sit at the table to eat cake and they all got to stand up at the table and hover over Cameron as he opened presents.

We were a little concerned that Cameron might feel anxious about it but he never did and the other children really loved that they could get the best look possible. It meant for some tricky positioning to get the photos I wanted and from time to time, we had to ensure that they didn’t start getting in each other’s way or pushing but for the most part, children do remarkably well when given a little freedom.

Coming to an End

bday 6 end

Tyler - little brother

After the cake and presents, it was quite amazing to see as one child wandered off to a bench to stare at the lake, 2 other children went to another part of the park to see ducks in the lake, 1 child went off to the waterpark, 2 to the playground and the rest into the roofed in area to play with some new toys.

They all had different ideas of what to do and some needed some space, some didn’t… the adults were able to clean up a bit and talk… it was perfect.

This meant that the children were all able to cope well with going home and hopefully even do well that evening since they were able to release some anxiety and stress on their own, on their own terms.

If we had the party in our house, that would not have been possible.

It was at this point that some adults began to question what was happening, why one child was on his own, why we let them all go off… and no, it’s not frustrating having to explain.

It was actually a perfect example and a great opportunity to explain one of the more important aspects to Autism… letting the children have their freedom. Despite their age, we have to respect that they know exactly what they’re doing. They know what they need.

That Evening

bday 6 cameron

Cameron - Happy Birthday!

As Cameron opened his presents to play with, he really had no problem at all sharing with his little brother. Much to our dismay, as well as Cameron’s, his little brother proceeded to break toy after toy… after toy.

Personally, I’d have been furious but not my Cameron. He took them away from his little brother but he’d tell him that it’s ok, it was an accident and move on to something else.

He was completely understanding and calm the whole time.

To me, that’s a true testament to many things, including what a great kid he is but also to what a huge success his birthday party was.

Such a huge day, in a big park, with a hot sun, with lots of friends, lots of sugar, exciting presents and so much more and even when faced with what should have been meltdown inducing on many levels, he was calm and happy.

Today is the day after and while we have a strict “no video games first thing in the morning” rule here, I was more than happy to let him play one of his new video games when he got up for being such a super trooper the whole time the day before.

He earned it.

And to my wife, it couldn’t have been any more perfect.

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Is Autism a “popular fad diagnosis”?

Recently, Dr. Allen Frances made the comment that Autism was becoming “fashionable” or a “popular fad diagnosis.” Before you read further, I invite you to read his article in full to understand it in context.

Now, many people, even after reading it in context, were outraged. How dare he? Who does he think he is?

Hopefully I can help clarify some of it, at least, in terms of how I interpreted his statements. You may agree with me, you might not. That’s all ok either way. My only goal is to give you a possible new way of interpreting his meaning.

Who is Dr. Allen Frances?

First, I’d like to tell you who the man is because when I posted the link to this article in a few places, people were quite appalled and upset that this “ignorant” man would say such a thing. They questioned his qualifications and suggested he look up the word “spectrum” in the dictionary.

For those that don’t know, Dr. Frances is not just a notable doctor, he was the man in the big chair of the committee that defined the DSM-IV(4).

The DSM is the Diagnostic and Statistical Manual of Mental Disorders… what you and I would call, the guidelines to diagnosing disorders such as Autism.

He was the man responsible for the introduction of Asperger’s Syndrome into the Autism spectrum.

So yes. He’s qualified.

Fad Diagnosis?

Most people read this one statement and immediately assumed that he was saying people were being diagnosed to be cool or popular. Obviously that is not his intention at all as it’s fairly obvious that no one would do that. The general population see disorders such as Autism, Schizophrenia and so forth as negative things… as something they really do not want to be associated with. (most people hear “disorder” and think “crazy”… which is sad, but true)

What he more likely means is that Autism has taken over mainstream media to the point where people discuss Autism around the water cooler now. Every parent wonders about it, every new parent fears it, schools need to be aware of it and anyone within the Autism community promotes it’s awareness.

As a result, people are looking for it. And we all know, when you look for something hard enough, you begin to see it even though it’s not really there.

Milder form? What?

What he is saying, I think, is that Autism was never really supposed to have a “mild form” or “mild presentation,” as he states in the article. That is to say, either you’re very clearly Autistic or you’re not.

The DSM-IV was designed such that you’d fit a certain number of criteria to be diagnosed. That is to say, you must have several impairments and thus, be considered disabled. You read that right, disabled.

However, by including Asperger’s, he allowed for people with “milder” symptoms to qualify for the diagnosis which means that individuals who show some signs yet are not disabled now qualify.

That’s not to say that all individuals with Asperger’s are not disabled… many clearly qualify which is why there is such a classification in the first place.

The problem is that there is no clear boundary set any more which means that a lot of people fit the bill.

Real life example

Emo Care BearTake your average rebellious, down trodden teenager who hates school, has no friends and doesn’t feel like they fit in. Sometimes they’re “emo”, sometimes they’re “goth”….  sometimes they’re just kids.

The question becomes… are they just being miserable or are they Autistic?

I could argue that pretty much every single “emo” person out there qualifies to be diagnosed with Autism or at the very least, Asperger’s.

Are they? No.

At least, certainly not all of them. Most move on from that phase and go on to be normal (semi normal anyway) adults with a regular life.

But as the DSM-IV stands, or at least the way it is interpreted today, every single rebellious, not fitting in teen, could be diagnosed on the spectrum!

See how that could be considered a “fad diagnosis?”

To make matters worse

Doctors are under a great deal of pressure when a parent faces them with a child that isn’t reaching milestones or is having issues… if a parent is convinced that something is wrong, the doctor stands there with a decision to make. Is the child just not smart, is that parent truly just a bad parent… or do they fit on the spectrum enough to squeeze them a diagnosis so that they can get some therapy/help?

This article is from a tabloid newspaper so it needs to be taken with a grain of salt, however, if even a shred of it is true, it’s easy to see how something like this could be perverted into a method to gain funds or help in other areas.

Autism is the popular disorder right now, it is beginning to gain traction with governments and insurance agencies. If money gets channeled to this area, parents and doctors could find a way to squeeze children into a diagnosis that gets them the help they need.

It may get worse before it gets better

In May 2013, the DSM-5 is scheduled to be released with even more major changes. Keep in mind however that it’s still going to be a while before it’s complete so the proposed changes are not final as of yet.

The DSM-IV introduced Asperger’s into the Autism Spectrum and now, the DSM-5 plans to wipe out Asperger’s entirely. Yes, you read that right.

Proposed changes include removing classifications of various disorders and syndromes in preference of using a “severity scale“. I use quotation marks but that’s what I call it.

Essentially, you’ll be given a diagnosis as Level 1, Level 2 or Level 3 which will determine the amount of support you’ll need. Click on the “severity scale” to read more on it from the official site.

So the whole issue with having “mild presentation” will once again become even more… milder? Uhmm… more people will fit the criteria. That sounds right.

And don’t think these changes are limited to the Autism Spectrum. Several types of schizophrenia will also be removed.

You can read the actual DSM-5 site here, if you don’t easily fall asleep while reading science speak.

PS. For anyone that noticed and is wondering… up to and including the DSM-IV, they used roman numerals but have decided to do away with that and use regular numbers starting with the DSM-5. So it’s not just me flip flopping… honest.

Back to the fad diagnosis

So yes, I can understand the outrage that many people felt because it was almost as if he was calling us liars… telling us that we had our children diagnosed just because we thought it was the popular thing to do and not because our children really are Autistic.

But I can assure you, at least from my understanding of it, that it was not his intention at all. Those who clearly fit the criteria and are deserving of a diagnosis have nothing to be offended by.

My son is very clearly autistic, he very clearly fit the criteria… he still does.

Perhaps that is why I did not take offense.

Clarification

To clarify and conclude, Autism is a disorder that is considered a real disability. It impairs many, or even all, aspects of your life.

The question is, are those who have difficulties and struggle qualified to be on the spectrum? Are they truly disabled? Are they truly impaired?

What do you think?

Do you think that people are being diagnosed a little too freely today?

Maybe the boundaries of what is and isn’t Autism should be confined a little more?

Do you think he meant something different than my interpretation? And if so, what did you take from it?

I’d love to hear from you.

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This is Autism, in plain English

Allow me to explain, in plain English, what autism is. If you have any interest in learning about autism at all, please give this a read. I’ll even keep it short (well, compared to a textbook anyway).

Technically Speaking

To start at the top, there is PDD (Pervasive Development Disorder) which is a group of disorders including Rett’s, Childhood Disintegrative Disorder and ASD (Autism Spectrum Disorder).

Within the Autism Spectrum Disorder, there is actually another group of disorders including:

  • Autistic Disorder (also called “classic” autism)
  • Asperger’s Syndrome
  • PDD-NOS (Pervasive Developmental Disorder Not Otherwise Specified or “atypical” autism)

So being “on the spectrum” and “having autism” may not mean exactly the same thing although some people, even professionals, may use them interchangeably.

I should also mention, Fragile-X is a genetic syndrome that is not autism but may cause autism.

Something I need for you to know

First and foremost, you need to understand that every single person that is on the autism spectrum is different. That means that every single symptom and situation is different.

From here on out, everything I tell you may affect a lot of autistics but not all.

Common Symptoms

  • Communication Impairment
    This can be broken down into a few areas, such as:
    Literal Thinking. This happens when a person is unable to, or has great difficulty, in understanding such things as irony, sarcasm, metaphors, expressions, etc. To use a phrase such as “I laughed my head off” would be interpreted by an autistic literally, they picture that your head actually came off.
    –  Inability to Understand Non-Verbal Queues. Many autistics explain that they are unable to tell what others are thinking by reading facial expressions or body language. Recognizing a person’s emotions is very difficult unless stated specifically and literally.
    Anxiety. Extreme fear of social situations often makes socializing near impossible. Autistics often prefer to avoid social gatherings despite having a strong desire to be a part of them. Autistics often feel like foreigners, speaking another language, in a place where they do not belong.
  • Sensory Processing Disorder
    Despite being a separate disorder, SPD (Sensory Processing Disorder) is quite common among those with autism. This is broken down as such:
    Hypersensitive.  Autistics often have an aversion to loud noises, lots of noises, bright lights, flickering lights, scratchy clothing (such as wool, seams), strong tastes, food textures and more. Anything that can overload the senses. Sometimes a simple hug can feel very painful all over.
    Hyposensitive. Often times, people with autism have a high tolerance for pain, sometimes not even realizing that they’ve been hurt.  The same is sometimes true of all of the five senses. While a person may hate being touched at times, sometimes they have an overwhelming need to be touched. Often weighted vests, blankets, etc can help.
    Filter. While not a sensitivity, often the brain lacks the filter that most people have to remove background sounds, smells, sights, etc.  For example, when you go into a restaurant, the music, kitchen sounds and other people talking all fade to the background so that you can hear the people you are talking to. With an autistic person, this is sometimes impossible… they hear it all at the same time, at the same level and become overwhelmed.
  • Routine / Repetition / Patterns
    An early warning sign is a child’s need to follow a strict routine, make repetitive sounds or actions to excess or to create patterns out of objects rather than play with them.
    Routine. All children need routine but children with autism especially need it. A break in routine can leave a child feeling completely lost, out of control and overwhelmed with anxiety. The severity of this varies greatly.
    Repetition. Children with autism often repeat words, sounds or actions over and over again for much longer than what you would call a phase. These are usually single words, small sounds or small actions… repeated over and over again.
    Patterns. Often children will line up cars in a straight line, put their cereal into grids or lines, single out single elements from a more complex pattern or anything else along similar lines. Rather than actually playing with objects, they’ll find more joy in aligning them somehow.
  • Stimming (Self Stimulating)
    Stimming can be defined as a person’s need to produce an output, a way to fill one, more than one or all of a person’s senses (input).
    What is it? Stimming comes in many forms but some notable occurrences include arm or hand flapping, moaning, head shaking, spinning, hitting oneself, moving one’s hands in front of their own eyes and so on.
    Why do it? Stimming is done either to satisfy a need for input, such as a craving for deep pressure or to hear something, or as a way to block out other input, such as moaning so they no longer hear all of the other noises in a room (fan, television, people, etc) or to feel deep pressure so that they no longer feel the scratchy fabric of their clothing. These are just examples of an infinite number of possibilities.
    Stop it? Some people wish to stop their child from stimming which, depending on the circumstances, can be beneficial or harmful. If stimming is done for self satisfaction and interferes with their ability to perform needed tasks, stopping it may prove beneficial. However, if the person is stimming to block out other overwhelming stimuli, preventing them from doing so may lead to a meltdown.
  • Meltdown
    So what is a meltdown exactly? Is it just a temper tantrum? Can a child be disciplined out of it?
    Temper Tantrum. A means to get ones way, or to express extreme dissatisfaction with being unable to get ones way.
    Meltdown. A complete loss of control over one’s faculties due to overwhelming anxiety, fear, pain, sensory overload or other outside pressures. A meltdown is very much akin to a reaction one may have to being tortured.

Epilepsy/Seizures

Approximately 20% to 35% of individuals with autism have a seizure disorder. About one in four autistic individuals begin to have seizures during puberty. The exact reason for the onset of seizures is not known, but it is likely that the seizure activity may be due to hormonal changes in the body.

Sometimes seizures are noticeable but most of the time, they happen so subtly that it can not be detected by simple observation.

Wandering/Elopement

In 2008, Danish researchers found that the mortality rate among the autism population is twice as high as the general population. Often times, a parent reports looking away for only a brief moment to find that their child has wandered off. Often times, they are found in neighbor’s pools, nearby woods, on highways and more.

People with autism seldom recognize the fear or danger in wandering off from the comfort of their surroundings.

Severe vs Savant

As a spectrum, autism can range from one extreme to another where one person may not be able to speak, use a toilet or dress themselves to another person that can remember Pi to over 25,000 places.

In the past, a person was considered “severely autistic” if non-verbal but today we now know that a person can actually have a normal or even high IQ despite verbal or other impairments. This means that just because a person can not speak, use a toilet or dress themselves, that there isn’t a very smart individual in there wishing to express themselves.

Also, not all savants are autistic even though “autistic savant” is when we hear the term most.

While autism can be a life long, debilitating disability for some, and while it may provide savant, superhuman like gifts to others, the fact is that for the most part, autism is a disorder which leaves people somewhere in the middle. Unable to handle a regular classroom, social setting, conversation and more but able to live independently with proper treatment and therapy.

Why an autistic person might not look me in the eye

One common recognizable sign or symptom of autism is the person’s inability or desire to look at a person’s face, or look them in the eye. Several well known autistics have described the process as “taking thousands of pictures of a person’s face every time I look at them”.

This is understandably very overwhelming and so, to avoid being overloaded into a meltdown, sometimes they will refuse to look you in the eye.

Other times, it can be described as simply a social awkwardness where they feel too much anxiety or discomfort with doing so.

Also, as with everything, this is not true of all people with autism. You’ll find that a good number of autistics really have no problem looking at you.

Causes

Other than Fragile-X causing some cases of autism, no one knows the cause for the rest. Genetics and other environmental factors (which includes vaccines) are often discussed in the media but no matter what you’ve read, no one knows the cause with 100% certainty.

Treatments / Therapies / Diets

There are countless treatments available although ABA (Applied Behavior Analysis) is the most widely used and approved method.
The most common therapies that help children are speech therapy and occupational therapy.
Diets proven to have the most positive effects include the GF (gluten or wheat protein free) and CF (casein milk protein free) diets.

No one treatment, therapy or diet will work for all people with autism although most have met with some success with at least some people. Because of this uncertainty, there have been some people who take advantage of the situation and create “snake oil” remedies which cost a lot of money yet don’t really work.

The truth is, though, that because no one knows the cause, no one knows the cure. As of right now, autism is a life long disorder with no cure.

Everyone agrees that the best chance an autistic person has at an independent life is via early intervention, which means receiving a diagnosis between the ages of 2 to 3 followed by receiving therapy, treatment and other help as soon as possible while still in the early development stage of their life.

How can you help?

  • Be understanding. Reading this is a great first step. The simple fact that you have taken a moment to know some of the characteristics and symptoms means a lot to a person with autism or their parent. Now that you know what stimming is and why it probably should not be stopped sometimes goes a long way toward understanding the person that is doing the stimming.
  • Do not judge. When you see a parent with a child that is screaming on the floor at a restaurant or grocery store, don’t be so quick to think that they’re a bad parent or a bad child. Perhaps that child is autistic and having a meltdown due to outside stimuli which feels like a constant stream of pain… such as torture. If you felt what that child has just been feeling, you may react in the same way. Autism can NOT be disciplined out of a person. It is hardwired in their brains.
  • Be accepting. If you know a child with autism, accept them for being different and needing to stim or be alone sometimes. If you’re at a party and you see someone on their own, be kind but respectful if they request to be left out of the group. If you employ someone with autism, give them a little extra room to cope with the crazy atmosphere around them and don’t be too hard on them if they avoid the X-Mas party. There are many ways you can adjust your own expectations to be accepting of their differences without having to necessarily give them special treatment.

So Remember

All people with autism are different. No one symptom is common among 100% of people with autism. No one therapy, treatment or diet works. Not all autistics are brilliant, not all autistics are non-verbal and not all autistics are dependent nor independent.

Chances are, you know someone on the spectrum and not even realize it. They may not even realize it either.

Please print this or copy it and share it with anyone wishing or willing to know more about autism.

Thank you.

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