Putting Faces on Autism: Wendee & Lauren

As I pulled into the driveway of the quaint brick building I could immediately sense that this was not just a house, but a home.  Sprinklers were running on the very hot, dry day as I walked to the front door; I was invited in and went into the living room to see that Lauren was playing with one of her cousins, who was very comfortable and helpful with her.   Wendee greeted me with a smile that held a small underlying apprehension, and we walked out into the back by the swimming pool where her mother, sister-in-law, brother, and niece (she was already in the pool) were.  Lauren followed us out and jumped right into the water.  We were surrounded by laughter and by love; it was a really nice communal feeling.  The yard was ample and full of things that said “grandchildren play here.”  I saw a lot of supportive mechanisms in place for a nurturing environment and I understood just how important it was for Lauren to be in this place at this time.  Autistic children need lots of supportive environments that include external family involvement which are not always readily available.  Wendee and Lauren had that support here and I could definitely feel it not only in that playful space, but in the social environment she was in.  This has been one of my favorite interviews thus far and I commend Wendee for her bravery in sharing; I admire her greatly.  This piece specifically will be used to educate as well as talk about this little family; Lauren’s father was unable to participate as he had to work that day, but it is my hope to follow up in the next six months and see how they are all faring.

It was a really hot day and the pool offered some respite and fun for the children.

Wendee and I made our way to a picnic table within view of the swimming pool (later moving to some swings once the children were done swimming) and began our conversation with the questions that I start many of these interviews with:  “When did your first start to realize that there was something different about Lauren?  When did you suspect that she was not developing as other children do?”    And as with many it seems, the pattern appears to be at about two years of age, however; in this case it was hard to convince herself, as well as others right away that there really was something else going on with Lauren.  It is important to acknowledge that this little girl is someone quite exceptional; her differences are masked by a brilliant little mind and a vocabulary that started to accumulate during her infancy.  She was talking far sooner than most children and in fact she was still a baby not even at a year.   Lauren’s vocabulary is immense and she often uses words that most adults do not use with any sort of regularity (or accuracy) and she is using them all contextually correct and often.  I was impressed by her bright little personality as I listened to her play with her cousins and inadvertent conversations with the people around her.  Lauren is high on the spectrum and has an Aspergers Diagnosis.  This is one of the hardest to diagnose simply because people just cannot seem to watch a child like this one and realize that her idiosyncrasies are not poor behavior, but in fact the product of this child’s specific special needs.  It is a frustrating thing for many different children and parents of autistic children, typically, as many other adults seem not to fathom that someone so fascinatingly intelligent could be so completely unaware of certain basic concepts as boundaries, transitioning from activity to activity, and social awkwardness; these particular issues are often paired with other symptoms like sensory issues, and motor skills (fine and gross) all of which are often associated with autism. 

But that is the crux of Aspergers and Autism in general:  an inability to read and understand appropriate social cues in others; i.e. social expressions, tone, and perceptions of facial expressions.  These things do not always register in that aspect of communication for those with autism.  For those with Aspergers, they are distinctly different than their other autistic peers in that they do not struggle with speech.  In fact, Aspergers people often have high verbosity and their grasp of usable speech is incredible, but speech is not all there is to communication.  The interactions between people, their smiles, and their frowns, their silent shifts of body or tone are not always innately discernible by people on the spectrum; the truth is it is as foreign to them as it would be for someone to be lost in a another country unable to speak the language.  There is too much nuance involved with people’s expressions; there is a blatant and natural assumption by those not on the spectrum that everyone understands what an intention is.  It is this assumption that makes humans the ‘x’ factor in a world that is often already fraught with chaos due to sensory issues.  Children and people on the autism spectrum function better with set structured environments as a measure to help them maintain control of the fear that permeates their lives.  People are the scariest creatures on the planet, because human beings are unpredictable.  Imagine not being able to tell what a person’s tone, facial expression, or action could mean?  They live in fear that they will make someone angry or hurt by a wrong action or statement all because they just cannot gage it by what they see in others; often their instincts are to withdraw or try too hard to find a way to relate with others on a similar level.  The best way to be with a person on the autism spectrum is just to be completely and blatantly clear in all aspects of conversation.   

As we sat together, Lauren listened to a stream of classical music; it was soothing and delightful to watch her joy.

Wendee saw these behaviors and with the help of her external family, she was able get confidence in the things she was already noticing from her mother, a retired educator in special education, and her sister that began to notice that there were a few things that didn’t seem to ‘fit’ right; specifically the common thread of lack of appropriate socializations, fixations on specific things, and fine and gross motor issues.  With her parents, they set out for the first appointment with the specialist at Mary Bridge Children’s Hospital where specific and pointed questions were asked of Wendee and of her parents.  One such question that was asked involved whether or not any of Lauren’s actions seem similar to other family members. Both parents looked at each other and immediately said that they saw lot of Wendee in Lauren.  When I asked how she felt about this, Wendee had this to say:

As far as hearing my parents say Lauren is just like me, I wasn’t surprised.  I do see a lot of me in Lauren.  Especially with the sensory issues, I hate loud noises.  My senses are easily overloaded when there are just too many things (sounds, lights, bright colors, etc.) and I have to remove myself from that situation.

Bravely, Wendee shared with me that she suffers from extreme and almost crippling social anxiety which she has gratefully noticed as absent in Lauren.  Although she seems to understand her daughter better than other people in the world, she has acknowledged that sometimes hers and Lauren’s issues can feed off of one another creating environments of high stress for both of them.  As has been shared, many people on the autism spectrum do not innately understand boundaries or how to understand when behaviors might go too far (this is called an inability to recognize cause and effect; Lauren cannot always immediately discern that certain actions can have adverse reactions based on tone and expressions of others during an interaction).  “There have been times that she has gone over to groups of children she doesn’t know and has taken toys from them.  That’s hard…It’s those situations that my anxiety is triggered…I start to worry about what other parents are thinking and not only about Lauren, but also about my parenting.  I tend to over-apologize for Lauren’s behavior.”  These moments of panic sometimes cause Wendee to have trouble tempering her own tone in public in such a way as to not come across too hard; while letting other parent’s know that she does not find the behaviors acceptable.  Parenting on the spectrum is a teeter-totter of trying to help children understand and learn boundaries, while realizing that basic concepts are not readily understood by the child.  Knowing the balance is a difficult one and many parents struggle as society only sees a child that just appears to be misbehaving; when in reality, the child is just struggling to attain an understanding that many children of ‘normal’ development seem to already grasp.  All other parents tend to see is a child that is exceptionally bright not playing right with other children, to Wendee this perception is magnified and she feels panicked to ‘fix’ the situation so that Lauren doesn’t offend anyone.

I loved that Lauren is surrounded by so much family; there was love and laughter. It is so important.

We sat and discussed and conversed many hours and later in messages to one another about how things have evolved for her and her daughter.  Lauren’s father has always been a constant in her life, but as with many families with children on the spectrum Wendee and his relationship has had many struggles along the way.   It is their plan that this summer they will be moving to a larger city as a family so that Lauren can have access to better education systems that are not currently available in the small community that she lives in at the moment.  It will mean a move from the comfortable home that they have known, but a necessary one for Wendee to help Lauren grow into the person that she needs to be and for them to try to make it work as a family.  With such a huge support in her external family, they will not be far away in case they need them.  I look forward to seeing how they have grown in a few months when I do a follow up with them and a companion piece to show where they come from.

Per the usual, I have wanted to help raise awareness about autism.  I love this specific piece because it talks about the biggest issues that many face when on the autism spectrum:  acceptance.  Just because it seems like someone should understand things doesn’t mean that they do.  Autism is incongruent, while many cannot seem to comprehend the most basic of concepts they conversely can understand functions of seemingly more complex mechanisms.  Perhaps the most amazing and frustrating part of it all includes the fact that every single person is so unique that there is no box or standard by which to place them in/under.  It is what makes them beautiful and amazing; it is how they are all unique.   

Near the latter part of our conversations in the last week, Wendee said the most amazing thing about her own struggles to be in the world in conjunction to her daughter:  “I am sitting in the observation room at OT (occupational therapy) watching my amazing daughter and how much she touches the hearts of her therapists and I just decided to go ahead and let it all out…She has come so far!  I am proud of her…”  We all have things that we struggle with in this life, but the amazing things that touch us most often happen while we witness our children change others when likely their lives are so far more chaotic and uncertain than our own.  When our children are brave like that, how can we not find a way to be brave, too?  All it takes is for one person to share something about him or her to help someone else that may not realize that he or she is not alone.