Autism: A Parent's Perspective

Photo courtesy: Arkansas Autism Network

As many of you know, our son has Asperger's Syndrome (and we recently learned that this term is no longer being used.  Now, it's just called high-functioning autism or autism spectrum disorder (ASD).).  Anyway, I'm often asked about the signs of autism.  Parents want to know the symptoms so they can keep an eye on their own children and recognize any problems, to answer the question of "how and when did you know?".  Those who have children with a recent diagnosis want to know how we handle certain situations, the logistics, and how we cope with the challenges that having a special needs child creates.  Students want to hear from a parent's perspective and humanize the clinical description of the term "autism", to find an answer to the question of "who are these kids, what do they look like, and how will I recognize them out in the real world?"  Others are just curious and wish to know more about it and raise their awareness. 

The truth is, the spectrum is wide and varying.  I can give you our personal experience and some general things to look for, but every child is different.  And I mean, EVERY child-from the neurotypical to the not-so-neurotypical and the last thing I want to do is limit or stereotype a certain "kind" of child.  The "not-so-neurotypical", though different by nature, are still children and still enjoy what most children enjoy.  Jackson, for example, loves pizza, ice cream, french fries, candy, playgrounds, video games, movies, camping, and parties.  He forgets to pick up his toys or brush his teeth.  He argues with his brother and sister.  I guess that is part of the reason that there are so many questions about autism.  In many ways, they are like any other child.  Any one of the symptoms, when isolated, doesn't necessarily mean your child has autism.  It could just mean they are "quirky" in that way or a little "high-strung".  It's the combination of symptoms that should give you pause.  Here is what we observed in our son...

 In Jackson's case, he has difficulty in social situations and recognizing social cues.  He can appear to be "in his own little world" sometimes.  Jackson is often oblivious to what is going on around him, and couldn't care less. 

He is also usually very literal.  For example, we used to say "It's time to eat".  Most people understand that to mean, come to the table and eat.  Jackson has learned what we mean when we say that now but before he just thought we were making a statement and he didn't need to act.  To help him, we try to be very direct in what we expect.  "Come to the table so we can eat.", etc.

Transitions can be difficult and those with ASD typically like routine and knowing what to expect.  He is not a fan of surprises, generally speaking.  Before we knew he had ASD, I remember when Jackson had a really hard time with seasonal changes.  In early summer, getting him to wear shorts and short-sleeves was a serious headache and resulted in serious meltdowns.  Around the time that he was getting used to shorts and short-sleeves, it was time to go back to long-sleeves and coats, resulting in another headache.  Now we don't have that problem but shoes are still an issue.  (More on that in a minute.)  As an example of surprises, about 4-5 years ago (he was around 3 yrs old) I had really long hair and always wore it up in a bun.  I dropped him off at Mother's Day Out and then went and got it chopped off and donated to Locks of Love.  When I picked him up later, he COMPLETELY flipped out on me, screaming at the top of his lungs "Put you circle (bun) back on!"  It wasn't until I started repeating over and over again that he was safe and I was the same mommy, that he finally started to calm down.  I even had a sweet friend who mentioned Asperger's as a possibility after this incident but we just shrugged it off as him being a high-maintenance toddler who liked things his way (which he does, but now we know why).

Those with ASD are usually hyper-sensory and easily overstimulated as well.  Jackson is very attune to how things feel, therefore he doesn't like his shoes to "feel funny" (and any pair usually does at first...transition, again.) and for the longest time he would only wear ONE pair of shoes until they were completely WORN OUT.  Now he's a little more flexible from day to day.  He doesn't like to wear sweaters and used to hate collared shirts.  Now, he only wears them on Sundays (my one dress code rule for church) and when he's wearing his cub scout uniform.  So, these things CAN be tolerated but they take time to overcome and will never stop being difficult for him.  Loud noises are a serious source of anxiety, which we've always found bizarre because he can be SO LOUD himself.  I suppose that has more to do with being in control.  He can shut himself up whenever he wants, but that's not necessarily the case in other situations.  We've also recently noticed that most slow songs, and particularly those in a minor key make him cry.  He is just a really sensitive kid.  When he gets overstimulated, he needs time to decompress and relieve the stress.  Sometimes he just needs a hug or to be held for a while, sometimes he goes to his room-turns off the light-and wraps himself in his comforter. 

Many with ASD will stim in an attempt to counteract the over-stimulation and to decompress.  Jackson is no exception here.  He shakes his hands or his head, sometimes both, sometimes coupled with "rocket ship" or "explosive" sounds-not so loud, more of a "Bshhh" noise.  We are working on ways to keep him from doing that by enforcing some other, less noticeable ways for him to "vent".  Just recently he learned how to finger spell the alphabet.  He learned all the letters in record time (like less than a day) and he blows through all of them faster than you can read it.  It is still a noticeable behavior but not as bad and certainly not as noisy.

But, on the flip-side, he exhibits sensory-seeking behaviors too.  He loves sand and dirt.  Always has, probably always will.  I cannot tell you how many times he gets into trouble for digging in the dirt during recess.  He is just drawn to it like a moth to a flame.  Same for water.  He loves taking baths and absolutely loves to swim.  He also loves touching super-soft things like blankets or certain stuffed animals and he loves to run...and he is fast!!  These things seem to calm him, another great way for him to decompress.

Another classic symptom is getting really upset when he is not able to do something well the very first time he tries or if he is not able to fix a problem right away.  Maybe the remote isn't working and he can't get the batteries in the right way or more often, his brother is beating him at a Wii game or maybe he is just playing by himself but not succeeding.  These are things that could upset most people but it is more than that among those with Asperger's.  These disappointments can result in serious meltdowns...and much more quickly...and take a long time to "get over".

Another difficulty that Jackson has that is fairly common among those with autism, but not so much among "Aspies" is speech.  He can pronounce words just fine, no lisp or anything like that.  His is more of an issue with formulating sentences that make sense or being able to get his words out, particularly when he's upset.  Communication can be frustrating and difficult for him sometimes, both understanding us (as described above) and being understood.

He is highly visual and recognizes patterns surprisingly well.  Just give him some wooden blocks of various shapes and you will see what an elaborate creation he can make!  It is truly a sight to behold.  He is also a very good artist for his age (certainly didn't get that from me!), has excellent penmanship, is a fantastic speller, and can read like a champ.  Naturally, I think he's a genius but then again, most parents think their children are geniuses so...(but really, mine is! ;))  Visual cues and aids seem to help him greatly in relation to social interaction as well.

My advice to parents with suspicions or who have recently received an autism diagnosis is to take it one day at a time, but get help quickly.  The sooner your child gets help, the more adaptable they will be (and the more sanity you will keep! ;)).  Jackson was diagnosed the summer before he started kindergarten.  We were blessed with family members who have professional knowledge of psychological behaviors who were also close enough to observe him and suggested that we have him tested.  That diagnosis led to a wonderful beginning to his school years, giving his teachers a "heads-up" approach to any behavioral problems he may exhibit and ideas for the best ways to handle them, giving him access to support and resources like speech therapy and occupational therapy as well as visual cues and other learning tools, and giving us much needed support and peace of mind that our son wasn't just a "disobedient child" or "disciplinary problem" before the year ever started.  It was a tough road and certainly far from easy, but I know without that early diagnosis, we would all have been worse for wear.  I can only imagine how much Jackson could have hated school...and home for that matter, if he had been constantly reprimanded.  I can only imagine how much more difficult it would have been for him to embrace flexibility, tolerance, endurance, and learn socially appropriate behavior.  That will always be a struggle but he has come SUCH a long way and we just couldn't possibly be more proud of him.

My second piece of advice:  YOU are your child's best advocate!  So, advocate.  Get involved at their school.  Keep your pulse on their progress/shortfalls.  Let their teachers know that you are on the same team and they can depend on you for support and assistance.  By the same token, when things are not going well, first-give the teachers the benefit of the doubt.  Secondly, share your ideas/opinions respectfully so they are well received.  Finally, if things are still not going well or you don't feel heard or your child is not doing better, or etc., speak up.  This goes for therapists and doctors as well.  You and your child do not have time to mess around or be overly concerned with hurting someone's feelings.  Look for those who demonstrate a desire to help your child, who voluntarily advocate for them and gravitate toward them.  Enlist their help.  When in doubt, remember.  Advocate and gravitate. :)

That is probably more detail than you cared to know but hopefully it is helpful to those who may suspect that their child (or someone they know) has ASD or to those who wish to increase their knowledge and awareness of autism.  Writing this helps me remember the specific struggles that our son has and just how challenging EVERY DAY can be for him.  I am in awe of his endurance in the face of so many hurdles that he must overcome.  He is our superhero!  He has such a sweet, sweet spirit and (most of the time) only seeks to please us.  We would all do well to remind ourselves of that whenever he (or anyone else with ASD) is having a bad day and we've exhausted all of our patience and our nerves are shot, which is going to happen, and often!  Maybe then we would exhibit more compassion and a more loving response.  I know I would.