By Margaret Sullivan

Fall, 2002

I have two children, ages 6 ½ and 4.  My daughter, Anna, is a first grader.  She is beautiful, delightful and maddening.  She does well in school, makes friends easily, and has been the kind of child that all her relatives can be delighted by and boast to friends about.  My son, Derek, is also beautiful, delightful and maddening, but his grandmother tears up when she talks about him.  His grandfather furrows his brow and has little idea how to play with him or get to know him.  His far-flung relatives ask, “Is he talking yet?”  And nobody wants to call him autistic.

The medical professionals always ask about the pregnancy and Derek’s birth – all exceedingly normal:  healthy pregnancy, regular full-term delivery, and robust birthweight (9 lbs. 7oz).  Regarding his development, he did everything he ought to have done at the right times: rolling over, sitting up, crawling, standing, walking, and babbling.  He even had his first word at 12 months, “Bus.”  Then he had two words a couple of weeks later, “Bus, Ball.”  He added “Mummah, ear, Daddy, no.”  Then, “ball” disappeared.  “Ear” and “daddy” fell out of use.  By nineteen months, he said only, “No.”

And, either because he was 19 months or because he finally was mobile enough to determine where he wanted to go and what he wanted to do, other behaviors appeared.  I thought of them only as annoying behaviors at the time, not troubling.  After all, my nephew had only 4 words at 2 ½ years.  My neighbor’s son had played only with household items (the dryer door, the microwave door, the light switch) and had not shown much interest in traditional toys.  But Derek had the combination of language delays, behavioral problems and atypical play.  We could not go through any automatic sliding door without him wanting to stay and open and shut the door over and over and over.  I used to take him to the mall early in the morning and find a seldom-used bank of doors and let him open and shut the doors until he was tired.  45 minutes, an hour would go by until I could persuade him, without a tantrum, to move on.  He would listen to the same tune on his keyboard for long stretches while he hid under a blanket.  He would scream in the car if I turned in a direction he did not want to go – almost a daily occurrence.  On bad days, I would break down in tears as I drove.  And driving on the freeways was one of the few things that seemed to make him happy and calm him down, so I drove and drove.

At Derek’s two-year checkup, I mentioned his loss of those few words and lack of talking to his pediatrician.  He agreed that it was something that should be watched and recommended that I call the 348-TOTS people.  Over the next 6 months, a string of very nice people came to my house for intermittent assessments.  In June of 2000, a psychologist came to my house and gave me a two-hour questionnaire at the end of which she turned to me.  She said she imagined that I already knew this, but she believed that Derek was autistic and would need more specific testing.  Of course, I did not already know this.  At that time, my impression of an autistic child was an isolated child rocking and spinning a plate in the corner, surely not my affectionate, boisterous boy with the huge smile and the irrepressible giggle.  I still had a lot to learn.  I still do.

The psychologist told me this news as my two children were climbing all over me on the couch and fighting with each other.  She then left me to absorb the news and still take care of my children by myself the rest of that afternoon.  So, …I went to the park.  I remember sobbing as I pushed my son in the swing (he liked to swing for sometimes 45 minutes at a time), but as I watched my bright happy son smiling at me and running around with his sister it made me focus less on the label he had just been given.  It’s not that the label was irrelevant: it was that he was so much more than that label.

We did not tell our family right away, because we still needed to absorb the information and go through a grieving process.  We told them he was being tested for developmental delays in his speaking.    A month or so later, with close family members, we began to introduce the “a” word as we referred to it then.  By the end of the year, we included a note about Derek’s diagnosis in our Christmas letter.  We had come to understand, by that point, about autism spectrum disorders, how different they can be and how mild or severe they can be.  We had met other parents with children with autism, and I can tell you we felt extremely lucky.  

We are lucky because our son is healthy and smart and has a great personality.  We’re lucky because he smiles and laughs and hugs and kisses and is mischievous.  He is sweet, cuddly, and sometimes a trickster?  He is incredibly good at computers, VCRs and the like, and we call him our global positioning device, because he has some sort of 3D map in his head that operates on a much higher level than my mind could achieve in a lifetime. 

Derek is now four.  His first diagnosis was when he was 2 ½.  He has received excellent special education services for autism through the Minneapolis School District and currently attends the Longfellow preschool program for Autism.  In addition to the speech language and occupational therapy he receives at school every morning, he also receives additional OT and speech language in a private setting as well.  The private therapists work on sensory integration—getting his senses to behave more like ours so that he is more receptive to learning in all the ways that other kids more naturally do.  

After a year of special education five mornings a week, last April, Derek said, “Oh” at the end of  “Old MacDonald.”  E-I-E-I-O.  His teachers cried.  This fall, Derek became potty trained and words and sounds are pouring forth.  He says the letters of his name out loud.  He tries to say numbers one through ten.  He says something like “I want more juice.”  He says, “Hee-haw” and “bow wow” and “moo.”  And he says, “I want out” (without any of the vowels).  These seemingly small accomplishments for his age are announced far and wide.  I’m on the phone with family, friends, and any unlucky telephone solicitor to tell them of his most recent acquisition.  After a long, dry winter, these are heady days for us.

While it is heartening to see progress and development, we still live with many challenges and worries.  I worry about whether I give enough attention to my daughter.  I still have many tantrums to deal with from Derek and they are sometimes so violent and destructive that I cannot attend to my daughter.  Derek’s needs tend to dominate how we go about our day.  He needs proprioceptive (jumping and thumping) and vestibular input (swinging, standing on his head) to help him organize his senses; otherwise he gets more and more restless and disruptive.  He needs certain things to be done in a highly ritualized way, or we experience more tantrums.  He seldom eats with the family and never eats what we eat.  His diet is extremely limited and not very healthy.  In addition, he is on a lactose-free diet now, so many simple pleasures, like getting ice cream cones, are off limits. 

We don’t have the freedom that other families might have once their kids reach the ages of 4 and 6.  We cannot go anywhere without packing lactose-free food (and food that Derek will eat) before we go.  We don’t have babysitters.  What might be fun for normal kids, like eating at a restaurant or a trip to the Science Museum, are just too loud and hectic for Derek.  (One of Derek’s more profound issues is his highly sensitive hearing.  He finds some noises unbearable, like the starting of a car or the scraping of forks on china plates.)  We often take two cars to attend events so that one of us can leave with Derek in case he can’t handle things.  That’s the other thing: we’re never quite sure what will be ok and what will really drive him nuts.

My own isolation can be a bit disheartening at times.  I cannot make play dates with friends because Derek often runs off on his own or throws tantrums if I try to converse with somebody else.  Some of the things that have helped counter my problems with isolation are a loving and supportive husband, autism support groups for parents, and a network of understanding friends.  The autism support groups help in two ways:  1) I’m reminded how lucky I am and 2) it really is important to hear phrases like “whatever works.”  I have befriended one couple who have two children with Autism Spectrum Disorder, but they have the best attitude.  They delight in their wonderful children and even joke that they really don’t know how to raise “normal” children.  They also manage to participate in choir, so they have a life outside their children.  That’s tough enough to do when your kids are “normal.”

My son’s progress is not linear and that can sometimes be disheartening, especially since certain steps in his development, like talking, are so hard-fought.  He has a long way to go in learning how to make his brain work his mouth the way he wants it to.  He is easily frustrated and often lashes out when I fail to understand him.  He is years behind developmentally in peer interaction.  The only kid he will play with at all is his sister.  He still has some problems with his receptive language, particularly in a distracting environment.  He is only now demonstrating that he can do things like imitate, mimic sounds and play in a creative and non-repetitive way. 

Right now, we feel good because he is progressing.  We’re learned the hard way that children really don’t develop skills at the same time and that’s still ok.  I would like ease away some of my son’s frustrations and relax his body from it’s high-strung wiring and share more in the private jokes he finds so funny, but I hesitate to say I would want to change him.  His disability, in a sense, makes him who he is.

The path that Derek is taking us on is strange, sometimes circuitous, and frequently repetitive, but it is a fascinating and sometimes wonderful excursion with a secret language that has enhanced our family.  We share Derek’s language “Mmm” and “eee!” and “no-do-no” and we now possess the language of therapists and specialists: “autism spectrum disorder” “PDD” “Asperger’s syndrome” “proprioceptive input” “sensory integration” “flat affect” “apraxia” “hyperlexia” and on and on.  My husband and I have developed a code between ourselves and even “diagnose” adults we know in our spare time.  “He’s on the spectrum,” we’ll say knowingly to each other.

My son is on the spectrum, there’s no doubt about that.  We worry that he won’t have any friends when he is older, or won’t have the ability to judge when to trust or distrust a person.  I worry that his limited communicative ability will always keep him in classwork that is below his academic level.  I worry that, by my reluctance to try every crazy or not-so-crazy “cure” out there, I will have deprived my son the possibility of being “normal.”  Mostly, though, we consider ourselves tremendously blessed to have this sunny, bright, funny, healthy, strong, unique little boy in our midst.

UPDATE:  Derek is mainstreamed in 3^rd grade now.  He has one best friend and gets along with his other classmates well.  He goes to birthday parties and even had one sleepover this summer.  He talks a lot!  He is excelling in music and math, and, while he struggles in reading and listening comprehension, has managed to stay at grade level in those areas.  His auditory sensitivities still bother him, but his other sensory issues have calmed down considerably during the past 5 years.  He loves legos, swimming, computer games, superheroes, family game night, soccer and playing with friends.  At the end of the school year last year, Derek won an award:  The Happiest Second Grader.