Autism: Behavior Management and Understanding

Unfortunately, many of the primary issues with Autism occur in social settings, so behavior management is a topic that is both wide and deep.  Kids are supposed to learn social cues growing up – from parents, teachers, peers, and more.  Kids on the spectrum find these cues to be challenging and even impossible, sometimes.  How a person acts in private and in public is an important part of living with other people.  Behavior Management is just one way to help a child navigate the tightrope of social interaction;  Understanding is what WE can do to help them, too.

School

Autism can definitely impact the way a child both performs and behaves in school.   The slightest annoyance or discomfort can send a child with Autism into a tailspin.  What some see as MISbehavior in a child with Autism, is often a coping mechanism to deal with sensory information that they just can’t process.  Believe me, as a parent, this is NOT. EASY. TO. REMEMBER.

Some kids act out by yelling or screaming for an hour or two with no breaks, and often no “rational” explanation.  Some kids destroy property or injure themselves or even others.   Some kids draw deeper within themselves and can’t express themselves verbally for a time.  In a classroom setting, this can obviously become a barrier to learning for the child affected, for his/her classmates, for the teacher, and for the parents.  Some children are unable to participate in an inclusive setting, and require special accommodations to meet education requirements.  {I will write more about accommodations, IEPs and education in another post.}

This article about Sensory Integration lists several ways an “overloaded” person may respond in a situation which proves to be too much for them.  I have seen some of these things – many of these things – in my own child and some of them I saw in her as early as age 3, but didn’t have all the information to put together then…  (The article also lists potential options – or “sensory diet” for handling these issues so it is a GREAT resource for anyone who wants to use tools to help navigate these moments!  One of the BEST articles I’ve read on this topic!)

Family & Social Gatherings

This is where some of the really awkward situations can occur for families with children on the Autism Spectrum. Rules of politeness and manners are rarely obvious to kids on the spectrum, and are not easy to teach or learn. While many children learn that it is not appropriate to discuss another person’s appearance, a child on the spectrum may point, stare and make LOUD comments or ask LOUD questions about someone else.

Comments like “You stink” because of perfume or breath, questions like “What’s wrong with his face?”, and grimaces, shrieks, and even yelling can occur because the child does not know how to process the visual information s/he is receiving.  This is why Autism Awareness and Understanding is SO IMPORTANT.

Is it okay for a child to make these rude comments just because of an Autism diagnosis?  NO.  It isn’t.  But it requires extra patience, extra time, consistency, and a lot of understanding to get this information to jive with the kid’s world. This is not simple behavior management.  This is not a lack of discipline. This requires a (sometimes) tedious amount of work and reinforcement that can be challenging for both the parents, family, and child.

Sometimes, this is why a “No, thank you” to an invitation happens.  It is easier to stay home and miss the event, rather than to deal with the repercussions of a child doing something or making a comment that causes offense…  

Many people find LESS understanding from family and close friends when a diagnosis of Autism is given.  Some people “don’t believe” that Autism is a physiobiological condition that affects the neural pathways of the brain.  They literally blame it on poor parenting or bad kids.  Unfortunately this happens a lot and families have to find ways to gain support from other families on the spectrum.

Regardless of who has the diagnosis, understanding that Autism has its own neurological process and requires more time and investment in a child, may help us all do better to bridge that gaps for the person who processes life in such a different way.  Very much like the prismatic effect of light on raindrops…

Autism and Late Diagnosis

This is a particularly difficult post to write.  Many children exhibit obvious behavioral patterns that point to a diagnosis of Autism.  Some of these behaviors include stimming, hyperfocus on objects or subjects, and severe language delays including nonverbal problems.  Other children, like our daughter, do not display these behaviors and still face huge challenges in social interaction and learning. Sometimes a diagnosis comes late, and certain behaviors have become rigid structures by which a child has learned to survive challenging situations

In our case, we did not receive the Autism Spectrum Diagnosis until our daughter was 10 years old and in the 5th grade, despite the fact that my husband, Greg, a licensed professional counselor, had been saying for at least 2 years that something wasn’t right and that ADHD didn’t quite fit her.  The benefits of prescribed ADHD medication never lasted more than 90 days without requiring a change (usually an increase in dosage), and some behaviors were actually magnified because of the medication.

When we first requested that Curly be assessed for ADHD, our pediatrician’s office at the time told us that he did not believe in ADHD because it was a discipline/behavioral issue.  This did NOT sit well with my husband, who was clinically trained to diagnose and counsel for ADHD issues, and it did not sit well with me either!

We changed pediatricians.

We had Curly assessed at school, because as her mom, I began to see patterns emerging with every subsequent school year.  She would start out on a high note – all A’s, loving school, making friends, etc., – and then around the 12 week mark, we would see a dramatic drop in her grades, in her motivation, in her ability to stay organized with her assignments, and with her ability to transition from school to home.

She would have screaming  meltdowns when she would come home from school – which at first appeared to have no reason to me – and which shot my stress level right up there around my-head-is-going-to-explode.  She began being more aggressive with her sister and brother, began destroying small items that belonged to other people, and became argumentative over ev.ery.thing.  All. The. Time.  She could scream and throw a fit for a good hour without stopping, and then it would shut off and she would be tired and sometimes could not even remember what she was so upset about.

If you knew our girl when she was young – 3 or 4 or 5 – you probably cannot imagine her being like this.

I was afraid that her ADHD meds were making her worse.  There were some meds that caused serious side effects that were scary, and we would have to stop that med and try to find another.  We purposed to avoid all of the amphetamine-based ADHD medications due to family history of addiction and because we just didn’t want to go there.  I always felt that I was screwing her up because I couldn’t show more Grace and less anxiety.  That maybe I was not disciplining her effectively, and that was the cause of these problems.

But finally, during the 5th grade, after Curly had seen her own counselor for a few months – we got a referral to a psychologist.  Rather than her behaviors improving with counseling and medication, they were growing worse.  And she was getting bigger and harder to manage.  The psychologist interviewed us and Curly several times.  He performed a QEEG which reviews brain wave activity.  We even had a medical EEG done because there was a concern about possible Absence Seizure (more like a “space out” than a convulsive seizure).  She could NOT tolerate the EEG in the hospital and we had to leave before it was completed because she didn’t like the sensors, the flashing lights, or the sounds of the  machine.

When the psychologist reviewed the QEEG, he showed us that Curly’s brain waves looked NOTHING like an ADHD child.  WHAT!?!  She showed NO typical patterns for ADHD, and other than disorganization and trouble staying on task, he began to tell us that he felt like ADHD was NOT the culprit.  That’s when my husband suggested we consider Autism Spectrum Disorder.

This opened a whole new conversation and realm of questionnaires, assessments, and feedback from teachers.  We reviewed her developmental history and things started to stand out that ALSO fit into the ASD diagnosis (one primary one being constipation…)  While teachers at school could not believe we were even looking at ASD (she is SO WELL BEHAVED at school), the more we worked with the psychologist, the more the pieces began to fit together.  She came off her ADHD meds, which caused some interesting situations, but the more he worked with her and began using biofeedback, the more I saw some of that sunshine come back in our girl.

A puzzle piece is the sort of symbol for Autism Awareness, and I felt like we had dumped out a box of puzzle pieces and were trying to put it together – only there were no corners – it was a round puzzle.  And she was my daughter.

Getting the Autism diagnosis was only the first step.  We have had a long way to come and we are still working on putting support in place for her – and for our family – and for awhile I have felt like we were “behind the 8 ball” so to speak.

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April is Autism Awareness Month

Over the past couple of years, the word “Autism” has become a hot topic in the news and probably in a lot of other places.   Autism itself is a hot topic in the medical and mental health community, and continues to be studied and researched because the more we know about it – the more we come to realize we don’t know about it…  April is Autism Awareness month and it is my goal to share more information, resources, and links for anyone who needs more information on Autism.

Autism Spectrum Disorder

What used to be divided up into a number of diagnosis codes, has now been compiled into one “spectrum” or range of symptoms and behaviors.  There are categories within the symptoms/behaviors to help a professional make this particular diagnosis, and there is a range of severity as well.  What used to be called “Asperger’s Syndrome” is now referred to as High Functioning Autism (HFA).

The signs of Autism are vast and truly range from very minor to very severe.  One child be able to communicate seemingly well, with few behavioral challenges, while another child may be completely nonverbal, non-interactive, and appear to be unable to make progress.

Autism Spectrum Disorder is a neurological disorder with deficits in communication (verbal and nonverbal), which affects social interaction and understanding of social cues, as well as challenges in repetitive behavior (including hyperfocus on specific topics), which restrict behavior.  There may also be intellectual delays, developmental impairments, and other challenges that coexist with Autism.

Because we live in a social world – we are built for relationships – Autism can certainly present an interesting challenge.

More and more people are sharing their diagnosis of Autism/Asperger’s, such as Dan Akroyd and Darryl Hannah.  Characters in the entertainment world, such as Sheldon, from Big Bang Theory are often said to be on the Autism Spectrum, due to the lack of social reciprocity and understanding of social cues, obsession with specific topics such as Star Trek or collecting figurines, and some of the other more obvious symptoms.

The one thing I know about Autism is that NO ONE on the spectrum looks just like another person on the spectrum.  There’s a saying that “If you have met one person with Autism, you have met ONE person with Autism.”

While some diagnoses share common characteristics – one child with ASD may be obsessed with basketball and phone games to an obsessive extreme, another child may have challenges with potty-training (control issues) and is unable to recognize facial emotion.  In fact, Autism continues to be a “hot topic” in the medical field.  The diagnosis itself has been classified and reclassified and even doctors cannot agree on all of these things.

Our oldest, Curly, was diagnosed with High Functioning Autism last year.  This was formerly known as Asperger’s Syndrome.  She requires accommodation at school, has trouble understanding social interactions and completely misreads some social cues entirely.  She often appears to be calm and happy, and she rarely has any difficulty at school.

On the other hand, she can relax at home.  She has learned magnificent coping skills at school – her psychologist was impressed with her ability to navigate through the classroom experience without really understanding a lot of what is going on around her.  Her teachers rarely complain about her behavior, if they complain at all.  Instead, her distress becomes evident when she starts to miss assignments, and can’t remember assignments, and has complete and utter meltdowns because the transition coming home from school is more than she can manage.  Her meltdowns include crying, yelling, property destruction, and aggression with her siblings.  A complete and total opposite of what most people see at school.

I am not writing this to simply share the burden of Autism.  We fought long and hard to determine what was happening with Claira from the time she entered 2nd grade, until she was finally diagnosed at the end of 5th grade.  We deal with teachers who simply can’t believe the diagnosis because the girl they see is so sweet.  (Magnificent coping skills!)  She loves talking with adults, so teachers are some of her favorite people.

Understanding her disorder does not make the hard stuff go away, but it does help us learn how to help her develop healthy strategies for dealing with things she doesn’t understand.  It is a journey.  And April is a great month to share more about our journey, and more about the journey other families are on, as well.  I hope you will stick around.