My Journey from Professional to Father

By Sean Swindler, M.S.Ed. —

I come to Autism from a different path than many, having worked first with adults with developmental disabilities, at the state level in disability policy, and then as a special education advocate and Case Manager for children with developmental disabilities.  Throughout this journey, I met many people with Autism Spectrum Disorders, worked with many families and children on issues common to the Autism community – behavior plans, obtaining appropriate services in both the school and community, and our kids with Autism caught up in the juvenile justice system. 

My wife, too, first experienced Autism as a special educator (we met in graduate school getting our graduate degrees in Special Education), doing those familiar special educator tasks of developing behavior plans, training paraprofessionals to implement a classroom routine and leading IEP meetings. 

So on paper, you could say we “know” something about Autism.  In fact, had you asked us 5 years ago, we would say we “know” something about Autism, with all the confidence of a person who has no knowledge of what they don’t know – Autism from the perspective of a parent.  

I think of myself as an empathetic person.  In fact, I consider it a strength.  I always thought I was pretty good at putting myself  in someone else’s shoes.  In fact, people complain at times that I like to examine things from too many different angles, to explore all of the possibilities.  Sure, I think I know what the parent of the child with Aspergers feels like when I, as the child’s Case Manager, assist the parent at yet another school meeting about yet another social misunderstanding with legal implications.  Sure, I can understand the daily impact of behavior on the dynamics of a family.  All the confidence of a person who has no knowledge of what they don’t really know.

My wife knew something was different when our son was 18 months old.  He was so intent on arranging his blocks in neat rows.  So upset when they were disturbed.   He was fascinated with the details in objects, with taking things apart and putting them together.  He didn’t sleep.  We once walked around the block at 4:30am thinking maybe if we do a little exercise he’ll finally conk out (he didn’t).  There was the time when he was so upset he reached from the back seat and pulled my wife’s hair and scratched her face.  There were the calls from his pre-school to pick him up because he wouldn’t lay down and nap and not stop bothering the other kids trying to sleep.

The first child psychologist said its clear he has Oppositional Defiant Disorder, which through my professional experience I knew was a catch-all way of saying “we don’t know why he acts this way.”   Another wanted to talk about the relationship I had with my father (fine, thank you).  Finally, on our third try, they pinpointed ADHD.  That makes sense.  I have ADD and that can run in families.  After more observations and recommendations from a good play therapist, at age 6 our son was diagnosed with Aspergers. 

On the way home, my wife and I had what I like to describe as our “V-8 moment” – that forehead-smacking realization that it all makes sense.  She could suddenly think of half a dozen former and current students who possessed similar behaviors.  I could think of a dozen children and families I had worked with who had Aspergers, and how many emerging similarities I ssaw between our son and their stories about their children.    Aspergers.  For lack of a better word to sum it all up:  duh.

The fascination since age 3 with Power Rangers.  The collector of action figures who can tell you who bought him which of his hundreds of figures where.  The fascination with Star Wars.  (Being somewhat of a sci-fi geek myself, I feel fortunate that I have at least a passing interest, but alas my efforts thus far have been futile to interest him in Star Trek).  Commenting out loud whenever his delicate sense of smell is offended. Did I mention he doesn’t like to go to sleep?  And school.

For over 10 years I had been a special education advocate.  People would pay me (actually, the non-profit I worked for) to attend their IEP meetings and help them advocate in the IEP process, sometimes in incredibly tense near due-process/mediation situations.   My wife, similarly, has lead IEP meetings for years as a teacher, and written IEPs in the district where our son attends school.  He needs an IEP.  Easy! This should be a piece of cake for us.  We’re blessed with a wonderful elementary school and a fantastic school team.  I don’t know what would have happened if we had a team like the ones in meetings to which I was usually called to attend in other districts.  Because it was hard.

It’s a different feeling.  My wife teared up a little during the first meeting.  My response when things are difficult emotionally is to do the opposite – to become detached and to view things over-analytically.  Except that doesn’t work when it’s your kid.  Your brain freezes.  You become overwhelmed by the process.  You say yes to things you may have told someone else to say no to.  You say no to things that aren’t important.  You sign the notice of meeting in the wrong place.  All behaviors the families I attended meetings with demonstrated over the years. 

And the list of all these things I experienced as an advocate, case manager or policy-maker over the years grows.  Like a wave of past professional experiences seeping into the most personal.  And its all different when it’s your kid:  

• Having a behavior analyst visit your home.  I guess we should clean?  
• Feeling like a failure when nothing discipline-wise seems to work.  But I know Autism, right?
• Deciding which medication to try or not try.  “It’s a personal decision every family has to make, but for some kids medications can be a big help” I must have said a hundred times.
• Deciding when to buck the recommendation of the psychiatrist and when to try something new.  But doctors are supposed to know what they’re talking about, right?
• Having that school meeting about a social misunderstanding that in a different place could have legal implications.  That parade of kids sent to court for shoving their para or standing too close to someone enters my head as I enter the school building.
• Speaking of courts…trying to avoid being tardy too many times.  Because some days he refuses to go to school or finds other creative ways to delay the inevitable.
• Working with the school to individualize curriculum.  Its harder to keep track of homework when some of it is modified.  Did you know that?
• Dealing with the stares when inappropriate behaviors happen in public.   You can feel the judgement, “why don’t you hire someone who knows how to work with your kid?” But I used to be someone who worked with kids with Autism.  I think.
• Being angry when a store clerk doesn’t understand your kid.  Did I mention April is Autism Awareness month? Here’s a brochure.
• Being thankful when they do.
• How do you talk to your kid about being bullied in school?  I was too.  And there’s little you can say that makes it better.
• Being thankful for the one friend (also with Aspergers) your child has and doing whatever you can to foster that friendship.
• Experience the real impact of all of this on family dynamics and relationships.  Did you know that everything you say at home will be repeated by your kid with Aspergers?

I guess I knew all of these things in a textbook sense, I had just never experienced them.

Which is the point.

I like to say that all of the incredible people and families I have known over the years have taught me.  Thinking back, I now know that’s true, it’s just I wasn’t learning the real lessons they were teaching.

Sean Swindler, M.S.Ed., is the Director of Community Program Development and Evaluation for the Kansas Center For Autism Research and Training (K-CART). For K-CART Sean is responsible for the establishment of community partnerships and development of individual programs to respond to the needs of people with Autism.   Before coming to K-CART, Sean was the Assistant Director of a community-based non-profit specializing in family advocacy and case management.  He has also held positions with the Kansas State Department of Social and Rehabilitation, Division of Health Care Policy/Community Supports and Services, and The Arc of Douglas County, where he was support staff for the Self-Advocate Coalition of Kansas (SACK).  Sean earned his Master’s Degree in Special Education with an emphasis on Transition, from the University of Kansas.   He is the parent of a ten- year-old with Aspergers and a strong interest in collecting vintage Star Wars action figures.