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Solomon Behar, MD and Andrea Lee Greenburg

 In addition to learning from experts, it is often insightful to learn from families who themselves have an interesting perspective that we can all learn from and teach us to be better clinicians.
 Pearls:
  • Some of the earliest signs reported from this mother who has a child with autism were not making eye contact in the first year of life, not engaging with his caregivers and no stage of separation anxiety.

  • The DSM V criteria for autism spectrum disorder (ASD) were updated in May of 2013; while it is important to remember that children with ASD display a wide variety of symptoms; diagnostic criteria includes (but is not limited to) deficits in social functioning and communication across multiple contexts, restrictive and repetitive patterns of behavior.  These symptoms are present early on in development and impair important areas of functioning.

  • Once a diagnosis of ASD is made, there are many services for which these children become eligible.   

  • This segment is an interview with the Andrea Lee Greenburg,  mother of Tyler, a 12 year old child with Autism.  The segment aims to understand what it is like to live with an autistic child and how medical professionals can be effective and useful when seeing autistic patients.

  • How old was Tyler when you knew “something was up?”  Greenburg recalls that as early as 12 to 15 months she “had a sense that something was off” with her child.  Her advice to parents is to listen to that “gut feeling” and her advice to medical practitioners is to not ignore the parent’s intuition.

    • Specifically, Greenburg says Tyler was “too easy” as a baby.  Even in the first year of life, he did not make great eye contact, he didn’t coo, he wasn’t engaging with those who held him and he had no separation anxiety (typically seen in children nine to twelve months).  It is purposed that one of the reason autistic children at this age do not engage with an outside stimulus is because they are going through an internal sensory overload.  Also, he wasn’t responding to this name.  Initially, for the lack of responding to his name, Tyler underwent a hearing test.  Greenburg also comments on Tyler’s fluctuations between being “hyposensitive” and “hypersensitive” secondary to a dysregulated sensory system.  For example, she would touch him and he would flinch right away.  Othertimes, he would be “lifeless”.

    • In Tyler’s situation, he never had language ability.  It is important to remember, however, that some children with autism will have language early on and then will regress and begin to lose some or all of their language ability.

    • Pickles et al. Loss of language in early development of autism and specific language impairment. J Child Psychol Psychiatry. 2009 Jul;50(7):843-52. PMID: 19527315

  • What is the diagnostic criteria for autism?  According to the DSM V diagnostic criteria, updated in May 2013, the criteria for autism diagnosis include (and can also be found here):

    • A) Persistent deficits in social communication and social interaction across multiple contexts.  This may be manifested by some of the following things:

      • Deficits in social and emotional reciprocity which includes a reduction of sharing of interest, emotions or affect and/or failure to initiate a response to social interactions.  These are all described in Tyler’s story.

      • Deficits in nonverbal communicative disorders used for social interaction, poorly integrated verbal and nonverbal communication, abnormal eye contact and body language and/or a total lack of facial expression in nonverbal communication.

      • Deficits in developing, maintaining and understanding relationships.

    • B) Restricted, repetitive patterns of behavior, interest or activities, that could be stereotyped or repetitive movements or insistence on sameness (for example, inflexible adherence to routines).  Highly restricted interests may manifest as one child who is interested in trains and will know everything there is to know about trains.

      • Hyper- or hyporeactivity to sensory input is also included in the criteria just as Greenburg describes about Tyler.  This can be an indifference to pain or temperature or no response to specific sounds or textures.  It can also be excessive smelling or touching of objects or fascination with visual stimuli like lights or movements.

    • C) The symptoms must be present early in the developmental period (but may not become fully manifested until social demands exceed their limited capacities).

    • D) These symptoms cause clinically significant impairment in social, occupational and other important areas of functioning.

    • E) These disturbances are not better explained by intellectual disability or global developmental delay.

 

  • Who helps Tyler with his sensory dysregulation?  Tyler works with an Occupational Therapist trained in sensory integration (OTSI) and Greenburg feels as though this has helped Tyler.  The field is growing and Greenburg encourages families to reach out to OTSIs if families feel as though this would be helpful for their children with autism.

    • The role of an OTSI is to help the child assimilate all the senses he/she may be dealing with.  Greenburg uses the metaphor of walking down a busy street, those without autism are able to filter out the sounds and focus on walking, those without autism are able to understand depth perception when the road is steep or narrow.  A lot of children with Autism Spectrum Disorders (ASD) are unable to manipulate and navigate all of their senses; either they feel bombarded or they are shutting it out.

    • OTSI can also help strengthen the muscles of the face and of the core; Tyler, for example, would drool as a baby secondary to poor facial tone.  He would also slouch.   The OTSI was able to work with him on both of these.

  • A point about the term ASD.  Greenburg likes to emphasize that, as the name implies, ASD is a spectrum.  While criteria exist, each autistic child may exhibit the symptoms of autism differently.  Because there are so many characteristics, non-verbal to limited verbal to completely verbale, for example, it is important to remember that when receiving the diagnosis of autism, we remember that each child is still unique.

  • What services are there for children with autism? After the diagnosis of ASD, there are services and treatments for which autistic children become eligible.  These include, but are not limited to, behavior intervention, occupational therapy, speech and language therapy, recreational play, play therapy, behavioral analysis.  In terms of navigating these services, Greenburg says, “You basically become the conductor of your own train and the availability out there for services are not always great and a lot of it is what we call trial and error. What one method would work for one child because again, the disorder is spectrum disorder, very wide ranging, doesn’t always work for another family. I often tell the parents, You’re going to get on the train ride and you’re not going to get off, but you can make the train ride more smoothly, or I call it the merry-go-round, and you have to become your child’s advocate. You have to become your child’s investigator.”

    • As a medical practitioner, it is important to remember that this can be very exhausting for families, especially families with two working parents or families with limited resources.  This can be an emotional time for a family when they understand that their child is not developing typically.  Adding to this, is the fact that in a lot of ways, ASD is still a mystery.

    • To cope with this, Greenburg states “All we knew was we were going to pull rank and circle around our son and try to find the most reasonable and when I say reasonable I mean methodical, well-priced if you can’t get state services, that would be beneficial to my son. The other thing too is again, trial and error and if you give it a timeline and you realize, Wow, my child for whatever reason is not responding to this particular therapy, abandon it, it’s okay, let it go. You don’t have to commit to it. It’s like breaking up with a boyfriend or girlfriend. Let it go.”

  • What types of people help Tyler the most?  Greenburg feels as though the “best people” in Tyler’s life are the ones who understand that each child with autism is different and those “best people” are able to tap into Tyler’s world.  And, there are a lot of people in Tyler’s life, from all walks of life from trained behavior analysis experts to graduate students to caregivers who understand that he is developing differently.  She reminds us that what a parent with a typical child might not even see as a challenge, can be a challenge for a child with autism and thus, Greenburg’s family measures Tyler’s successes in how well-adjusted he is with a new challenge.

  • Who makes up Tyler’s medical team?  He has a pediatrician, a developmental behavioral pediatrician (from whom he received the diagnosis), a psychiatrist as Tyler also has symptoms of inattention (which many children with ASD do), a speech pathologist, an occupational therapist, and a play therapist who helps Tyler to socialize.

 

Editor’s note:  It has been recognized that there is a high prevalence of ADHD in children with ASD.  Some literature even suggests that there is an “additive” effect in that these clinical pictures may be more severe than in children ADHD or ASD alone.  This has implications for treatment and it is suggested by some that treating ADHD in children with ADHD and ASD will improve clinical functioning.

Ashwood et al. Brief Report: Adaptive Functioning in Children with ASD, ADHD and ASD+ADHD. 2015 Jul;45(7):2235-2242. PMID: 25614019

    • Tyler also engages in extracurricular activities that Greenburg feels helps him emotionally and physically.  For example, Tyler surfs and swims (while supervised one-one).  Water activities can be very therapeutic for children with autsim but they must be supervised at all times.   Greenburg encourages families who have children with autism to find these people and these activities in the community.  It is important to find organizations that understand children who are not developing normally.

  • What is the best way to handle an autistic child in an unfamiliar medical setting?  The most important thing is to have a quick conversation with the family or caregiver and ask whether that child has any sensitivities to which you should be aware?  For example, do certain sights or sounds make the child uncomfortable?  If so, perhaps dimming the light would be helpful.  If the child is sensitive to touch, you might want to verbalize before you touch the child.  Ask the family whether they have a “routine” around medical visits, and if so, follow that as much as possible.

    • Greenburg, for example, “preps” Tyler before activities.  She says “tomorrow you are going to the doctor.  She isn’t going to hurt you, she just needs to check your ear.  If you have an infection, she might have to give you a shot.”

    • Other “prepping” techniques include pictures, writings, social stories in which the story is written or pictured before it happens.  All of these techniques try to minimize the unknown as much as possible.

    • Rewarding good behavior for that child at the medical appointment is also a possibility.

    • It is important to be sympathetic to the parent or caregiver’s emotional state; if the autistic child also has sleep issues and the family has been up all night, it is important to recognize that.  As a medical practitioner, it is important to remain humble and recognize in yourself what you do and do not know about children with autism.

In summary, Greenburg states “It is a privilege and an honor to raise a child with autism. It is not easy, but it is still, I feel, a privilege because I’m his mother and I’m his advocate and his voice. However, at the same breath, again, it does not envelope and engulf my entire life and again, I go back to having that balance and understanding that the most important thing is (…) trying to find the levity and the humor in every situation and particularly when it comes to some of the more serious and heavier stuff in raising a child with autism. Again, it’s just been great. I think too, with time, you get more perspective and you get more understanding and you accept for yourself in terms of who your child is and what he needs to be. What he needs to be is not what you think he needs to be. What he needs to be is who he is.”