“My 21 Year Old Autistic Son’s Heart Attack- Better Services needed for Adults with Autism

A week ago today my twenty one year old son with Autism and Intellectual Disability was undergoing an Angiogram.  This started when he complained of headaches three days prior.  I gave him over the counter headache medication.  By Friday evening, when I arrived home from picking up my youngest son from school and asked his sister where he was, she said he came in from the school bus and immediately went to bed because was not feeling well.  I called his Primary Care Physician and asked for an appointment and was told they did not have an opening.  So I took him to Urgent Care and he was seen by a Physician’s Assistant.  Habitually, I plan medical appointments with great care because I take extraordinary steps educate their doctor’s about their diagnosis and the best way to communicate with my children.  The hurdle I try to avoid is having my kids meet new doctors.  When we are seeing someone new there is always the possibility that we may run into some challenges because if his Autism diagnosis.  Such was the case with this new Physician’s Assistant.  So at 4:00 PM that evening, I was asking this increasingly annoyed PA to please check the sinuses and please order a head x-ray because all of my son’s stats were normal and he could not articulate the other symptoms he was feeling.  I knew he was not well.  The seemingly frustrated PA eventually wrote two prescriptions and sent us on our way.

I was not entirely convinced that my son’s issues were cleared up by that visit and during a conversation with my brother I mentioned just that feeling.  My brother responded, “Make sure you check up on him during the night and shake his body to see if he is OK.”  About 2:00 AM I heard my son pacing and went to him asking how he was feeling.  He replied, “My heart is pounding.”  I took his blood pressure which turned out to be 120/79 and his pulse was 77.  I told him to get dressed and I will take him to the ER.  We went to CHOC’s because they have a nifty Autism Center and I thought they might be able to communicate with my son and get to the bottom of his symptoms.  I explained to the intake folks that he said his heart was pounding but even though his blood pressure and and pulse seems fine I did not like his seeming discomfiture and asked if they could look at his heart.  The very kind and gentle Team checked in my son and got him to an EKG machine in less than five minutes.  The Tech first mumbled to himself that it must be a mechanical error and re-did the test.  He left the room for a quick second, returned and summoned us over to another room where about ten people were waiting for us.  They hooked him up to machines and poked and prodded asked me to sign some forms and in less than a couple minutes we were transferred over to St. Joseph Hospital where I was told his symptoms were calling for adult care and the team at St. Joseph were equipped to treat my son.

Several men literally rushed him across the street and up a ramp in a hospital bed, into the ER of St. Joseph with me running behind them with a couple plastic bags containing his clothing, shoes and other items, struggling to keep up with the commotion at 3:30 AM.  Even more people dressed in a variety of scrubs in a brightly lit room with a huge contraption at center mass, were waiting for us as my son got hooked up to the machine; an IV bag started in one arm and blood drawn from another.  I was standing right outside the room trying my best to respond to a woman asking me pertinent admitting information while deciphering what was being done with my son in the next room.  Eventually I was called into the room with my son and asked several questions like, “When did his pain begin”?  I was responding while trying to take it all in…  Watching my beautiful boy giving everyone that great big smile and trying to answer their questions.  “What kind if pain is it?  Sharp, or does it feel like something pressing down on your chest?”  I eventually suggested to them to move on because he had no clue what they are asking… One woman informed me that they did an EKG both at CHOC and St. Joseph and the result was showing a problem.  She went on to say that the Tripoin levels from my son’s test show a 12 and normal level is 0.45.  She also explained that the oxygen level in the blood is at 50% and less than 55% is problematic. They would accept 75% and normal range is 95% to 100%.  I am nodding as if I understood exactly what she was telling me.  Then a man came forward and said. “Ma’am your son is having a heart attack.”  Well, that I understood…

Without missing beat I calmly asked, “OK, what next?”  A woman urgently rushed me into a corner to sign more consent forms and answer questions about family history, religion and living trust.   I stepped aside briefly and called the important people in our life and asked for prayers.  Next we were on the move, along with the team and my numerous plastic bags, which were thrust into my arms by a couple individuals.

A  doctor stating how rare it is for them to see a seemingly healthy 21 year old male having a heart attack, wanted to know if he takes steroids or any other stimulants.   I replied, “To my knowledge, no.”  I explained that would be very unlikely given the supports he has in place in his life. We were rushed down a very long hallway toward the operating room, everyone trotting and a lead nurse explaining to me that there will be a procedure whereby they will try to determine the extent of the damage and the doctor continuing to ask questions.  Then I was abruptly told to wait in a room with chairs and a TV tuned in to a sports channel and my son was being whisked off.  I asked them to stop and asked if I can go in with him and they said no.  So I told them I needed a minute to prime him.  He was looking confused and scared so I did my best to reassure him; explain to him what was about to happen and told him he has to be a “big man” and be brave while they examined his body to find out why his heart is pounding.  And fix it!

About ten minutes later I was asked to come into the operating room and given some head attire to wear in there.  My son was not cooperating.  He needed to urinate in a container while lying down on the bed with stuff hooked up to his arms and he told them he would not.  The head nurse asked me to make him pee because they needed that before the procedure and they would not allow him to stand up right now.  I took one look at my son and knew he was not having it!  He was ready to elope…  and he would carry that entire contraption with him.  I informed the nurse that they were asking an Autistic man who is ritualized, who has made pee standing up his entire life, to urinate laying down in a room full of strangers hooked up to machines, who is currently highly anxious because something entirely new and awfully scary is happening to him…   I suggested that they get him up off that bed if they wanted his urine.  That would be the simplest and most effective solution here.   As soon as he stood up my son almost filled that huge container.

The Cardiologist who had now arrived on scene, asked me about his history and was yet another person commenting on how unusual it was for a seemingly healthy twenty one year old to be having heart attack but they have to follow the test results.  He informed me that my son was given EKG’s at both CHOC and St. Joseph’s and his enzyme test was repeated and the numbers were consistent.  I asked him what exactly was he going to do to my son and he explained the procedure and said they would insert a stent where they found blockage. The procedure should take about ninety minutes.  He asked for hints to help him communicate with my son.  I explained that priming is best.  When they are administering anesthesia, to tell him for instance, “You will feel a cold gel and we will rub this cotton ball here on your arms, etc.”  If he says no to something to stop and give him time if they can, to adjust…  So I was sent back to the waiting room to wrestle with thoughts of the chicken tenders and french fries my son ate for his entire life and images of blockage in his heart vessels because of that!  I contemplated the fragility of life and my Mom’s recent passing two months ago.  I was engulfed with fear but also with an overwhelming determination to be strong for my son and immediately learn ways to help him adjust to his new life, what ever that would be.  I glanced at the three plastic bags on the floor and mused at the absurdity of the value seemingly placed on their contents at a time like this.  “Ma’am, make sure to take your bags with you…”  I pulled out the rosary beads and began to pray.

I’d set the timer on my cell phone for ninety minutes and was startled thirty minutes later when the Cardiologist returned to the waiting room.  However, he seemed pretty calm.  He explained that there was no blockage, my son’s vessels were strong and my son’s heart was in “excellent” condition for a 21 year old male.  As soon as I heard that I burst out in tears.  He paused to have me collect myself but I quickly wiped my eyes and told him to continue, while I pulled out my phone to take notes.  I told him I am sure he has a busy schedule that I am overwhelmingly relieved and grateful.  He continued to tell me that my son did not have a heart attack in a traditional sense but the walls of his pericardium are inflamed and his oxygen levels are low.  The inflammation is caused by a viral infection and he needs to be hospitalized.

My son remained hospitalized for three more days.  I remained with my son around the clock during his entire hospitalization.  I translated both for him and the caregivers and kept his anxiety level down during his stay.   According to the Cardiologist, the virus causing the Pericarditis takes three weeks to be healed so we will return for more testing at that time.  Now at home and currently taking several heart medications, he is not as yet out of the woods.  In the meantime, he has modified activities while his routines remain the same.  Everyone caring for him during his hospital stay found out how important my son’s routines were.  He would be anxious without his routine so that will remain intact because we do not want any additional stress on his heart.

Naturally after such an event one reflects… I am no exception.  One of the first things I thought about was how fortunate we are with the programs we are now running for my son.  I believe without a doubt that his current ABA Program saved my son’s life.  Just a few months ago he started a program that taught him abstract concepts such as inner feelings and time lapse.  We developed this goal due to a social misstep he took at school because he was totally unaware of the ramifications.  We have a brilliant ABA Therapy Program Supervisor, Theresa Bartholomew who is supporting all my kiddos at home.  Her gift is dissecting the needs of children on the autism spectrum, whether they are two or twenty two years old, then writing a program and goals with an outcome of achievement and success.  Theresa is an outside the box, thinker… A make-a-way, find-a-way problem solver.  She is an ABA Master Strategist.  It is truly a pleasure working with her because my children have all benefited from our collaboration.  Without disclosing her protocols, she oversaw the program where my son was  taught about the idea of pain.  He was taught the label “headache” and what it means, where you feel it and what you should do about it when you experience it.  There are a variety of tools, from photos to technology, utilized to teach him these concepts.  But her talented scripts are simply masterful.  When I think of her approach to the application of ABA Therapy I often think, “This ain’t your Mama’s ABA!”  Teaching a young man with Intellectual Disability these concepts requires repetition, time and patience.  However what I know to be true is my son has and continues to develop.  +It has been proven time and again that he is capable of learning and he’s shown us that he loves the feeling of achievement.  From the age of three, my son has been taught many of these behavioral social and life skills through Pivotal Response Therapy and Applied Behavior Therapy.  During the past six years, Theresa has been a part of giving him top notch ABA support.  I thought of her when I was in that hospital room watching my son laying down on that bed just out of sorts for the first twenty-four hours.  I also thought of how many times I have had to battle to ensure he received the support he needed because so often the preference from funding agencies is to have a cookie cutter approach for programs and just pass them along to all clients in need of service.

It seems to me that for a long time, the primary focus in treatment was on Early Intervention; of which I am huge proponent.  I’m very encouraged by every effort in research and opportunities that have been made available for our young kiddos.  What I a finding as my kids age, is there was not much forethought given to what would happen when our kids grew up.  That is evidenced by the sparse number of opportunities available to them at their current ages of twenty one and twenty three.  Then, in addition it seems to me that there is an assumption that somehow at the age of twenty-one or twenty-two substantive growth and development ceases and simply placing individuals on the autism spectrum in a day or work program of sorts, is the answer to the rest of their lives.  What I’d like to offer, having two adult children with autism spectrum disorder is that they certainly can still very much grow and develop.  Time and again my children ages eight to twenty-three, have proven that the slow, steady and repetitive approach to learning has been resoundingly successful.

I am certain if I had accepted the status quo; was not proactive in meeting what I felt he needed and working with such a talented team, we would not have been teaching my son abstract concepts.  Additionally, we certainly would not have received funding from The Regional Center for such program.  Regional Centers do great work but are limited to certain criteria.  This particular program for my son was funded through his insurance.

What I know for certain is that funding organizations such as The Regional Center need to offer access to effective Adult Services.  These programs must serve the entire person.   Individuals on the Autism Spectrum deserve the dignity of complete care.  As I have stated before, these skills must be taught for a lifetime… not just a few weeks here and there.

Here are some ideas that come to mind for needed services for our Adult children,  from a couple Swanky Moms:

  • Assessment Tools: There are not many assessment tools available for adults with Autism to gauge where they are developmentally in many areas, so that substantive programs and goals can be created.  +As our children get older their needs change and skills development in their varied areas of need are required.  That would allow them to learn how to utilize these skills and apply them to life.  Much as my son did when he told us about his headache.   At twenty-two, much like the rest of us, life is just beginning for many individuals on the autism spectrum. They need to be taught differently to navigate life as adults.
  • Skills Training: Public Speaking, Special Community Projects
  • Job Training: Career exploration and training.  Matching skills and interest with job
  • Health Training: Body Awareness, Communicating Medical Needs
  • Emotional/Psychological Tools:  Stress Management, Coping Skills for Intense Emotions, Self Care, Mindfulness
  • Safety Training: Getting around in the Community
  • Physical Fitness Training: Modified Fitness Activities for Special Needs
  • Social Skills Training: Proven Evidenced Based such as PEERS
  • Sexual Education Training: 
  • Self Advocacy: Learning to establish boundaries

Having two adults on the Autism Spectrum I constantly wonder what full adulthood will look like for each of them.  Then I try to ensure that my children have access to programs that will create a road-map and path to a successful adulthood.  For me, that includes every aspect of their lives.  Many of you have read my blogs or heard me say, “Raise the adult, not the child.”  It has been my motto when it comes to obtaining services and developing programs for my children.  I realized long ago that they needed repetitive skills training in order to develop and master the habit of “spontaneously” accessing a skill when needed.  My son has Intellectual Disability so naturally, navigating success is quite a process.   My daughter who is extremely highly functioning, for entirely different reasons needs similar supports sustained over a long period of time, due to her inattention and distractibility; which makes her vulnerable to failure.  There are very little mechanisms in place that allow for a second or third or fourth attempt to catch that moving bus or train, take an exam or perform the task assigned to you on a job.  I also realized that they needed a visual  road map… that is why I’ve provided them with social stories in every step of their journey.  Individuals on the autism spectrum need to routinely and methodically, for the rest of their life, be given the opportunity to visually reference matters pertaining to life skills, health, safety and job tasks (if they are employed) for ongoing that describes a head ache is an important

According to Dr. Sharyn Kerr, Autism and Behavior Expert:  “Self-advocacy is an important skill to teach children, but for children and adults with autism, it can be a matter of life and death. The ability to communicate one’s thoughts and feelings, one’s desires and needs, is challenging for individuals with autism who may struggle to communicate abstract concepts and understand what options and supports are available. If an individual with autism who feels unwell is unable to communicate their physical symptoms and request medical help, their physical well-being is at risk.”

What I know for certain is when substantive Adult Programs and Services were developed for individuals with Autism, not only would it be transformative, but also empowering and enable them to live richer lives.  It may even save a life!

I urge you to keep this conversation going.  On behalf of all our adults on the spectrum, let’s continue speaking up!