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.

About Stuart Duncan

My name is Stuart Duncan, creator of http://www.stuartduncan.name. My oldest son (Cameron) has Autism while my younger son (Tyler) does not. I am a work from home web developer with a background in radio. I do my very best to stay educated and do what ever is necessary to ensure my children have the tools they need to thrive. I share my stories and experiences in an effort to further grow and strengthen the online Autism community and to promote Autism Understanding and Acceptance.

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21 Responses to This is Autism, in plain English

  1. Kelly Parkes July 20, 2011 at 7:08 pm #

    My son AJ is 11 years old and was dx with Autism in 2001. He is an amazing kid, and this is the first time I have EVER seen Autism spelled out in plain simple English. Thank you for your hard work in keeping people informed. This has helped and my husband and myself have shared this with our friends on Facebook. Good Luck with your son and I hope to read more incredible articles.

    Thank you!!!

  2. Denise Foote July 20, 2011 at 10:28 pm #

    I have 3 children “on spectrum” and am often irritated by the way that people make general-isms about autism that never apply to all (or any) of them. I began reading sure that I was going to end up angry. I’m really pleasantly surprised. Thank you for posting common sense in plain English. I can’t wait to share this and to read more of your work.

  3. mayra-raquel July 21, 2011 at 8:18 am #

    thank you so much for putting it in plain English !!! you have no idea how frustrating it is when your own family can be so ignorant and all you want to do is to choke them out simply because you yourself don’t have a good enough explanation for them…. i printed out so many copies to share with my family and friends to help them out =) again thank you so much and i will be visiting your site frequently now =)

  4. Nicola Quilliam July 21, 2011 at 8:22 am #

    I LOVE the way you have written this down for all to understand. If you don’t get it after reading your explanation, I figure you’re not going to. Thank you. Great job!

  5. Donna Gayle July 21, 2011 at 5:00 pm #

    Two of my children and myself are dx: Aspergers Disorder. So much of our world is what I call “shadowed reality”…We know there is more to the world than what we see and feel, that in some cases the world is actually less than what we process.

    Thank you for explaining this so succinctly, yet so elegantly.

    As a side note, I don’t do the “looking in the eye” thing because it is literally painful from a sensorial perspective. It’s an intimacy that is difficult for me to do even with my husband.

  6. Sabrina July 21, 2011 at 5:53 pm #

    Dear Stuart. Thank You. I needed this. I am in the process to explain my whole family, who is like the “big fat Greek wedding” family. About my son. Who is autistic. See, the thing is, we live in different countries and the 90% of the family, blood and in law one, lives in the same city in a different country. That makes things so difficult to explain so I needed something like this. I will translate it to my maternal language and add my personal comments, related to my son’s case and use it. If you give your permission please!

  7. Brooks July 21, 2011 at 7:50 pm #

    Perfect…from start to finish!

  8. Brandy July 22, 2011 at 9:19 am #

    Absolute perfection! Thank you so much for posting!

  9. Stuart Duncan July 22, 2011 at 2:02 pm #

    Absolutely Sabrina, of course you can translate it and share it as much as you like.

    I really appreciate all of your comments and feedback.

    I’m really happy that this has been so well received and truly hope that it helps in getting others to understand autism a little better.

  10. Sabrina July 22, 2011 at 7:37 pm #

    Done, Finally had the time to translate-adapt it ( as for example the example about “laughing my head off” won’t apply in Spanish I used a common phrase used when you laugh a ton in Mexico. But with the same result to the text)

    I will send it to my Spanish Speaking friends and family. Thanks.

  11. Karen August 2, 2011 at 7:44 am #

    Absolutely brilliant. Copying it to everyone who comes into contact with my daughter. Girls are different again even to the general presentation of Autism. They slip through the net more often because they tend to ‘copy’ others behaviour and ‘hide’ their autism better than boys. So the bad parent/bad child scenario is played out more. Thank you for doing this Stuart.

  12. Penny Sherwood December 30, 2011 at 11:36 am #

    Thank you Stuart. This was the easiest language I have been able to find, (for me) to understand. You are such a Blessing.

  13. swattz101 December 30, 2011 at 11:49 pm #

    Thanks again for linking to this on G+ today. My boys, my stepson and some of my cousins have differing symptoms at differing levels.

    My wife often gets frustrated because people don’t understand how to deal with her son who is very high functioning. Her has nadir issues with crowds and loud noises. He have himself a major case of hives at a school assembly not to long ago due to anxiety. The fun thing (sarcasm) is getting doctors to agree. They say he can’t have autism/aspergers because he can look you in the eye in social situations. What they don’t understand is he grew up having to focus on his aunt who is partially dead and lip-reads. He almost stars at you to a fault because of it.

  14. JC January 21, 2012 at 10:42 am #

    Good blog, certainly good start for those that are interested and know very little. I do believe especially with in a definition do a disorder one would not label those who have been diagnosed as an “autistic.”. I know and appreciate your thoughts on that with general use of the term, and while I do not agree understand where your coming from. However, within a definition of the disorder it must be understood that someone with the diagnosis of autism (or anything on the spectrum) may certainly have other comorbid diagnosises. I know for my son that is true, and it is important for caregivers to not only look at his classic autism when setting care. Over and over I have to remind them of the other unique issues. You seem to suggest that but in reading once you get to the end by calling people “autistics” even while stating they are unique, it leaves an impression they are not. Linguistics truly has influence on people, thus within a definition of a diagnosis, I believe you should use the term in that way. One has, not is. Anyways it is a good overview, but also you may add how those with autism do not engage in mimetic desire, as neurological normal. Blessings, JC

  15. Stuart Duncan January 21, 2012 at 11:14 am #

    Thank you JC. My response to “person first language” can be read here: http://www.stuartduncan.name/autism/the-last-word-on-person-first-language/

  16. Ginger April 2, 2013 at 8:42 am #

    wondered if you’d read individual reports like this: http://www.thespunkycoconut.com/2013/03/ashleys-progress.html or studies like this: http://jcn.sagepub.com/content/25/1/114.short There’s a lot more of the same kind of reports out there – people who’ve found a way to minimize “attacks” by going gluten-free. Really a wonderfully written blogpost – thankyou.

  17. sahiranageen July 23, 2013 at 7:55 pm #

    Hi. Mr Stuart duncan ,I am the mom to an 8 years old autistic kid male.I live in Pakistan and in peshawer .sir there is no institution or school for my child I have tried for immigration to canada for the sake of my son in 2008 but after a long wait they refused me on the basis of the fact that the doc who had done medical for the visa wrongly diagnosed him as mental retardation as there is not much knowledge abt this disease here.sir I am a medical doc my self and my hubby is a paediatric surgeon my other child is normal .now it is really difficult for me coz when admitted him in normal school as he could utter only 20 words and screams and laugh when exited so he wz soon kicked out,when I visited a mentally retarded school I found that my son was not like them as his IQ is v near to normal will u plz guide what to do there is a speech therapist but my son is not attentive and so its very life for me.plz guide as I am a working mom and coz fear of abusewhich is v common here I can’t leave him with servants .please tell me what to do u r lucky that u r in a developed country I wish I could immigrate to one for the proper education of my son

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