Mom's last stand - an Autism Spectrum Disorder Manifesto

So what I started out writing as an explanation became a diatribe that turned into a manifesto.  This is spurred by our miserable experience at trying to get a Christian education for our youngest child - who is definitely on the spectrum.  It's based on my own experience with two of my three kids, my nephew, cousins, and so many more family and friends.  I do not clam that this is the result of scientific research. It is simply the last attempt I can make at helping those who will not or cannot see just how worth it the experience of trying to educate a unique child can be. I think it is too late for us in this context, but maybe it isn't too late for someone else. Maybe somewhere in the world, there is a door still open.

This said, my friends, go forth -- spread the word. Share my words. I don't even need the credit for it. Just please let it spare someone else the anguish we have experienced on this rocky path.

Mom's Last Stand - an Autism Spectrum Disorder Manifesto

September 14, 2012

Getting angry at a child with an Autism Spectrum Disorder (ASD) for not being able to act like “all the other children” is similar to getting angry at an adult with Alzheimer’s Disease because they don’t know who you are.  Their brains just can’t work that way.j

When you look at them from the outside, both the kid with ASD and the adult with Alzheimer’s may look perfectly healthy and capable. When you talk to either, they might converse in a manner that makes you think that they are “normal”. If you keep talking though, both will eventually give you subtle cues that let you know that this person is not “normal”.

Neither condition can be cured. There is no fix, no magic bullet. Parents of kids with ASD are faced with a maze of potential treatments and therapies that, like those for Alzheimer’s, might appear to “work” for a while. Some even longer. No one can know in advance which path will work best for which patient. There are successes that bring elation, sometimes followed immediately by anguishing regressions.  But in the end, both the child and the adult with these conditions will still be afflicted with a burden they carry for their entire life.  Neither can “control” it.

To get deeper in depth with ASD, here are some pictures painted with words that might help to foster understanding:

-sometimes kids with ASD have sensory issues  Temperature, noises – even talking, textures, smells, weather, time of day – all of these and so many more can cause reactions in this child that range from fidgeting to full-blown tantrums or even rage.  They cannot easily control it. Some cannot control it at all.  Imagine that you have a fear of snakes. Someone near you either knows or does not know that you have this fear. It makes no difference – when they bring a snake up to your face or set it on your desk, you will likely have an involuntary reaction to that snake.  This is how God made the human nervous system – with a very strong fight-or-flight response.  Now imagine that  the same person, having seen either your mild alarm or full blown shriek of fear, continues to wave that snake right in your face.  How would you react?  Or perhaps a bee or even a fly keeps buzzing in your ear. You swipe it away only to have it come back again. It persists. You’re trying to concentrate on something in front of you – maybe a book, or a meal, or the evening news.  How long does this bee or fly need to buz in your ear before you are driven past the boundaries of patience? This is often a daily experience with kids who have ASD. And the cause of the response might be as simple as a tag I n a shirt. Or  an eggshell.  To add to the mix, the fears are not always static – some stay, some go, some manifest seemingly out of the blue.

-many of these kids are empaths  Ahh, here we move into even more abstract territory.  What is an empath? Dr. Judith Orloff, MD, offers this definition, “Empaths are highly sensitive, finely tuned instruments when it comes to emotions. They feel everything, sometimes to an extreme, and are less apt to intellectualize feelings. “ (http://www.drjudithorloff.com/Free-Articles/emotional-empath-EF.htm). To summarize, think of an empath as an emotional sponge. For kids wit ASD, this can  be very scary. Try to picture a time when you were around someone and you got “a bad vibe” or you just felt their feelings – joy, rage, fear – rolling off of them in waves. This happens to an empath daily. DAILY. Like a dog that smells fear, kids like this tune into the emotions of others around them, and, not necessarily being cognizant of what is happening, they respond.  It can be like being stuck in a room with someone you can just tell doesn’t like you, even though they might smile at you and not speak a word, for a whole day. Then magnify that feeling you have times 100 or more.  Kids with ASD who have this trait live with this every day and they can’t turn it off. To put it simply, they know when they are not wanted, and react accordingly.

-they can be very rigid.  This is a trait that tends to be in common with kids with ASD.  Many of them function best with a routine schedule that they can count on. They might like to eat only certain things for every meal. Or they  might have a limited repertoire of foods from which they will choose to eat. This can be attributed to some sensory issues such as taste or texture, but it also might be that with certain foods, there is a static quality that they can depend on. Sometimes this child might insist on taking the same route to school or grandma’s house and the like. They depend on this unchanging route to bring calm to the chaos they otherwise feel.  Along the lines of rigidity, many of these children have a very strong inner sense of order. They like to have rules, but they need to know the rules. It is very often necessary to have these rules in writing so they can be referenced.  They are not good at perceiving rules or figuring out unwritten rules.  They really need to understand the rules, so often they will need the reasons for the rules explained. In detail. Repeatedly.  If a rule is unjust or illogical in their eyes, they may find themselves unable to follow them.  This is where a patient adult needs to explain the rules, explain them in different words, and explain them again.

-they tend to be very smart Scary smart.  These are your budding Einsteins or Edisons. They have the intellectual capacity to discover a cure for cancer or to build real weapons of mass destruction. The parents are always praying that the good side will win out in the end! They can be years ahead of their cohort in intellect and frequently have a voracious appetite for learning. However, due to sensory issues, typical desk and lecture learning is frequently not the best method for instruction. Some may be kinesthetic or hands-on learners – learning in motion.  Some may learn best by hearing it read aloud. Others can look at a diagram and figure out how to rewire your house. The capacity for achievement is without end. It’s just that these kids often need to have their personal learning styles accommodated as much as possible.

-they tend to also be emotionally immature With their abundance of “smarts” there sometimes seems to be an equal and inverse amount of emotional control.  Again, you look at this child and expect “normality”.  You can’t look at a person and know their emotional stability. They don’t shift gears quickly. If they have done something wrong, often they do not own up to it straight away.  They need time to first recover from whatever emotional and/or sensory turmoil they might be feeling. You will probably have to problem solve with them. This involves talking through what happened and asking enough questions to get to the point where you can finally say, “can you see where that might have been a bad choice?”  They’ll get it. They will. But you have to be patient. Laying down the law and expecting them to not argue their case – remember how smart they are – is not an approach that is likely to be successful.  This might seem contrary to rigidity, but one has to remember that emotions are usually tangled up in violations of the rules. If problem solving isn’t working, take a big breath, walk away for a few moments, and then come back and try again. It’s a lot of work, isn’t it? It certainly isn’t easy! As an adult, you might find yourself in the position of having to pick your battles, or sometimes just walking away – not continuing the conversation. It doesn’t mean that the child “wins” or that you as an adult aren’t respected or “in control”. It means that the child is overwhelmed and cannot help themselves. That is why they need us to be the bigger person and help them.

-you’ve got to look at their progress in relation to their own baseline  You simply cannot look at the typical two steps forward – three steps back  - four steps to the right experience and determine if they’ve hit some arbitrary mark that their peers have hit.  You have to look at their progress overall. It’s sometimes going to look like , “Hey – today he cut paper successfully, at age 9” or “she read a work of fiction? By her own choice?” . The goals for most parents for their children are achievable and in small steps.  Having beautiful handwriting takes a back seat to seeing the child make friends, smile, or even laugh out loud.

In the end, it is a long journey, just like with Alzheimer’s disease. Some days your loved one will know you, and in the next minute, they are asking where you are.  One day with the kid with ASD will be smooth sailing, the next will be stormy seas. What works on that day will surely be different than what works on the next day, and the day after that will be something altogether unrelated.

Kids with ASD can be a parent, teacher, or family member’s greatest challenge.  They can  also be your greatest reward.  Getting from the freaked-out emotional child who curls up on the floor because they can’t tune out a whisper to discovering a cure for cancer is not an easy journey. It takes a lot of prayers, love, patience, and extra maturity on the part of the adults in their lives to make it happen. And who knows? They might not get there.  The best you can hope for might be holding down a job at a fast-food restaurant. But they are still productive members of society. God made them just as they are. To say otherwise is to say that He does not know what He is doing.  These kids are unique. They need us to fight for them because they can’t always find the words to express their feelings.  They are worthy of our patience, our tears, and most of all, our love and respect.