Reaching out to parents of newly-diagnosed autistic children, with love from an Asperger’s / autistic adult

I’ve wanted to write this post for a long time.  I’ve long felt a desire to reach out to the parents of children on the autism spectrum, for whom the diagnosis is recent, and the initial feelings still fresh.  Especially those for whom the diagnosis was not easy to take.

I may be going out on a limb here.  I don’t think I’ve spoken directly to you yet.  Tonight, I’d like to change that.

I’m not your child.  I don’t claim to speak for your child.  He or she has their own thoughts and their own voice.  I may not even have much in common with your child.  But I do share something fundamental with your child: I am on the autism spectrum, too.

After the initial diagnosis, you may have the feeling that things are going to be different now.  And in a way, they will.  But they won’t, really.  Nothing will change, in that your child is still your child.  But with a diagnosis, you have clarity now…kind of.  You have the information you’ve been provided, which is, unfortunately, probably outdated and less-than-accurate.  I know that there are plenty of resources out there already.

But my hope is to provide the perspective from one adult on the spectrum.  (The interesting part is that our voice is often considered an alternative perspective, but I digress.)  My goal is to provide some food for thought, a firsthand viewpoint, and maybe some support, encouragement, or even hope.  I felt like offering my thoughts, just in case it helps anyone; take from it what you will. 🙂

Thought 1 ~ Empathy & Emotions:

You can pretty much ignore what the doctor or counselor said about “lack of empathy”.  Your child almost assuredly has empathy; it just may be a different type.  It may be expressed differently.  S/he does care.  He or she assuredly does love you.

S/he does have emotions, and those emotions can be rather deep and complex.  They may not always be able to identify or express what they’re feeling, or they may express it in a different way.  Those methods of expression or emotional responses might be perplexing at times, and occasionally, they may seem inappropriate.

What your child displays on the outside may be completely unrelated to what’s happening on the inside.  He or she might be feeling elated and joyful, but seem abnormally calm, placid, or even ambivalent on the surface.  Or they may not cry after losing a loved one, but may be dealing with an ocean-current of emotions inside.  Sometimes, that emotion may come out sideways, and at times, long after the event has taken place.

There may be a paradoxical emotional expression, too; I remember feeling extremely embarrassed as a small child because I couldn’t stop laughing upon seeing my mother cry after finding out that a family friend had died.  I was extremely devastated at the news, and I was distraught seeing my mom in pain.  I was maybe seven years old, and incredibly frustrated with myself for the (nervous?) giggles that escaped despite my best efforts to suppress them.  I was anything but happy, and I saw anything but humor.

Thought 2 ~ Positive Aspects:

Despite the stubborn emphasis on the deficits, inabilities, difficulties, and other negative aspects of autism, many people–lay people and professionals alike–often overlook or just plain don’t realize that there can be just as many positive traits, too.

Your child may be a budding genius.  Maybe s/he is an inventor, a researcher, a philosopher, a scientist, a computer programmer, a musician, a writer, an artist, or a machinist, waiting to change the world.  All they’ll need is your patience, encouragement, support, time and space for activities, and maybe high-quality instruction in her/his chosen interest(s).  If their stress levels are kept low, they may have an excellent memory, too.

But the “genius” stereotype is a little over-played and over-valued.  There are actually better traits than intelligence.  For example, you may not have to worry about a lying problem (or if you encounter one, it may be short-lived), since many people on the spectrum tend to “tell it like it is”.  This means we’re often pretty straightforward.  Your child may not beat around the bush much.

There’s a flip-side to that; they may interpret what you’re saying fairly literally, too; they may have trouble with idioms, sayings, analogies, etc.  You may have to do a bit more explaining.  You may have to inform your child that what you said is a joke or hyperbole; they may need that gentle heads-up.  You’ll build the biggest trust and the strongest bonds if you’re very serious in what you say; i.e., don’t make promises you can’t keep, and don’t dramatize.  When we learn how to spot if someone is BS-ing us, resentment may sprout and grow.

Thought 3 ~ Stress, Stimuli, & Meltdowns:

Our nervous systems are wired a little differently.  People on the spectrum can be easily overwhelmed, whether those stimuli are positive or negative.  Your child may have a tough time in public places, social situations, family gatherings, entertaining at home, or any areas where there’s a lot going on.  S/he may also pick up on other people’s emotions and/or actions; if you’re in the grocery store and a nearby child is having a (willful, voluntary) tantrum, your child may launch into one, too.  An action scene in a movie may prompt him or her to become aggressive or combative for a while, too.  Eye contact and physical touch might be overwhelming as well.

Autistic people (children and adults) can become significantly less functional under stress.  Our memories falter, our concentration is lacking, our moods become less stable, we might “lose our words” (become non-verbal), we may engage in “stimming” activities (meant to self-soothe or bring focus), we may not be able to handle physical touch, etc.  Stress takes on three shapes: psychological/emotional, physical, or biochemical.

If you can, try to find out what the stressor is (it could be anything from a sub-audible sound to an irritating light to a tummy-ache to an unknown reaction to a particular food to a scolding from a teacher to suffering s/he recently witnessed on TV) and do your best to eliminate it.  This may take a little “digging”, but it’s almost always worth the effort–for yourself, and especially for your child.

I have personally noticed (and heard of) what I’ll call a “resilience level” among autistic people.  I know I have one, and it changes from day to day.  I describe it as a threshold of sorts, an internal, invisible line that glares, “Do Not Cross” at me.  Other people on the spectrum may describe it differently.  Sometimes, that line is not where I expected it to be.  Even as an adult, I often find out the hard way just where that line is on a particular day.

Thought 4 ~ Interaction:

Becoming non-verbal or refusing touch does not mean your child doesn’t love you.  It may mean “something’s up”, such as physical discomfort, neurological overload, being over-tired, emotional difficulty, etc.  Or it may mean that s/he is busy “processing”, thinking, or engaged in another mental activity.

I have always become instantly-and-extremely irritable when, while intensely engaged in a favorite activity or deep contemplation, someone comes by and starts asking me questions or talking to me.  If your child responds in this way, it’s probably not you – it’s possible that your child needs to do things on their terms.  I’ve written about why I think this happens (at least, as I perceive it).

People on the spectrum are usually (although not always) introverted to the core.  I always cringed when my mom would excitedly whisper, “go say hi!”, or prod me to shake hands, or force me to play with someone.

Autistic people may (or may not) communicate much with words, but that doesn’t mean we’re not trying to tell you something.  We may (and often do) communicate in other ways.  My own examples include music composition, creative writing, other people’s music, movie lines, made-up words, etc.  Your child may use dolls, other toys, gestures, sounds, facial expressions, drawings, etc.

Thought 5 ~ “Laziness”:

Your child may appear to be dreamy, inactive, or even “lazy”.  Don’t let their outward appearance fool you; chances are, your child is NOT lazy.  There may be more going on “upstairs” (in their minds) than a non-autistic person will ever realize.  The internal world of an autistic person is often rich, vast, vivid, infinite, and always active.

People on the spectrum can take longer than non-autistic people to “switch gears” – i.e., stop doing one task or thinking one thought process and start doing or thinking about another.  Spectrum peoples’ brains often engage in a topic, activity, or thought much more deeply than non-spectrum brains.  Once fully engaged, that train of thought moves at light-speed; it cannot afford a roadblock or bump in the track.  It will derail, and it won’t be pretty.  Gentleness is key here.  It’s a tight rope to walk, between straightforward/clear, yet unintrusive and subtle.  It’s an art form…

But then, raising children itself is an art form; having a child on the spectrum just means that, when necessary, you might sometimes have to paint with a different color palette. 🙂

(There may be a “Part 2” at some point; I’m not sure yet, but probably.)  🙂

(Both paintings are by one of my favorite contemporary artists, Leonid Afremov (link to his main site), one of the most talented painters I’m aware of.)