There is a nation in our world today that is totally invisible… well, at least most of the time.  It is a non-political nation.  This nation often endures great poverty.  Its citizens are sometimes treated quite unfairly by those in other nations.  Until recently, those who needed help in this nation weren’t allowed to save money up for any big goals.  For many, their every move is watched, judged and others feel they should be in complete control of these invisible citizens.  The nation has no name or geographical boundaries.  Many people who gave birth to these invisible citizens wish they could create an island where this nation could reside in safety and with the respect of other nations.  This nation has been called by several labels… Level 1 Autism… Asperger Syndrome… High-Functioning Autism… even Uniquely Human.  I know about this nation, because my first-born child is a citizen of that nation.

Many times in my life as the parent of someone with “level 1 autism” or “Asperger Syndrome”, I’ve endured pain, frustration and even embarrassment over the fact that my daughter’s truly significant challenges and the behavior they sometimes instigate are misinterpreted.  People think or say things like, “Did you ever try spanking her as a child?”… or “No one ever taught her manners.”… or “What a totally selfish and rude person.”  Nothing could be further from the truth about her or about our parenting.  It took us six years to teach her how to wash her own hands.  She could not speak in the first person until age 5, we socially rehearsed her before countless events (yes, even before Carol Gray’s wonderful work). 

Society is becoming better informed about autism than ever before.  However, individuals on the autism spectrum are still envisioned as either highly challenged or little geniuses just waiting to be discovered.  While challenge levels and strengths vary just as much as with “typical” people, They seldom fit the common stereotypes.  When unexpected changes occur, those with autism are set off-balance. Their anxiety levels skyrocket and their perceptions are challenged from within.  This can result in a giant meltdown, a near panic urge to leave the scene, rude behavior or utterances or a variety of truly unusual actions.

If someone physically appears different, by rocking, flapping their hands or walking with an odd gait, today’s public would be likely to understand or have a modicum of sensitivity toward that person. If the person were obviously visually impaired and walking using a white cane with a red tip or using a guide dog, or if the person was having seizures, or if the person used a wheelchair, a walker or leg braces, the two same positive responses are likely to be the reaction to odd behavior or words.  I believe that the general public is more inclined to kindness than to cruelty.

Many parents of more advanced people on the autism spectrum have said they wish their child had a physical indicator or medic alert bracelet that would let people know their offspring have autism.  However, most of the teens and adults I know who are on the spectrum do NOT want to be singled out in any way. They want to “blend in” with typical peers or be known for talents, not challenges.

Another huge acceptance challenge for these individuals is that despite frequently normal or above intelligence and a true desire to have and keep friends, they struggle to do so.  Often they appear totally self-absorbed and egotistical.  When one cannot take the perspective of others, their own perspective is all they have. Some experts say that people on the autism spectrum lack empathy.  Here  is an eloquent rebuttal to that fact from a very intelligent man with autism:

                “I keep reading that people on the [autism] spectrum lack empathy and are unable to take others’ perspectives.  I think it might be more fair to say that we may lack certain expressive and receptive communication skills, possibly including some basic instincts that make communication a more natural process for typical people.  This, combined with any cognitive or perceptual differences, means that people with ASD do not share others’ perceptions.  ‘Empathy’ is a nebulous term that is often used to mean projection of one’s own feelings onto others.  It is therefore much more difficult to ‘empathize’ with someone whose perceptions are very different.  But if empathy means being able to understand a perspective that is different from one’s own, then it is not possible to determine how much empathy is present without first having an adequate understanding of each other.”

                “But I do mind when in spite of so much effort, I still miss cues, and someone who has much better inherent communication ability than I, but who has not even taken a close enough look at my perspective to notice the enormity of the chasm between us tells me that my failure to understand is because I lack empathy.  If I know that I do not understand people and I devote all this energy and effort to figuring out others, do I have more or less empathy than people who not only do not understand me, but who do not even notice that they don’t understand me?” (Quote from Jim Sinclair (ANI) in  More Cognitively Advanced Individuals, Susan Moreno. Jessica Kingsley Publishers. 2010).

Along this line of logic, I don’t expect even my closest friends to perfectly interpret my daughter’s words and actions every time they stray from typical.  She makes just as many faux pas as others.  However, her ability to understand the impact of that error has on others and to know when and how to apologize for it is not as good as typical people. Therefore, when she tries hard to “fit in” and either has a meltdown or acts oddly in front of others, few people tend to understand that hours of stress trying to  keep up with the pace of typical life, has simply faltered for a moment.  Thus, judgments of being intentionally rude or self-centered frequently result.

For people that are very high-functioning on the autism spectrum, it must be like having to walk a tightrope every day.  I cannot imagine the stress that can create and the resulting anxiety.  It must be truly exhausting at times.

My friends and family are kind and flexible about these situations.  I thank them for that very much.  However, I worry about times when my daughter isn’t among friends.  I also worry about the invisible nation of people just like her out there who struggle to keep friendships and jobs despite these challenges. 

When those of you reading this come into contact with a member of this “invisible nation”, never be afraid to ask parents, caregivers or the person themselves (when calm) about possible motivators for upsets.  They need and want your understanding.  However, they may not be able to ask for it.

Another problem is that, in an effort to understand “autism from the inside,” people take the perceptions, opinions, experiences and talents of one person with autism who may write a book or give a presentation to be the same for ALL individuals on the autism spectrum.  While their insights are highly valuable, we must remember they are individuals, and thus are not a stereotype to apply to all.