United we stand, divided we fall

united we stand

By guest blogger: Ali Hoffman – TACA Volunteer Maryland

The autism community is the most divided community in the world.  Some say it’s a disability, some say it’s an opportunity to celebrate diversity, and most say – that’s not my (child’s) autism.  What one group does to support families is viewed as offensive to another and vice versa. On Thursday November 14, Autism Speaks converged on Capitol Hill to address the increase in autism diagnosis, lack of services and support, and demand help for the 2 million families living with autism every day (1.)  Many people are hopeful about this initiative, many are thinking it is not enough, and some are outraged that Autism Speaks seeks a cure for neurodiversity.

Neurodiversity: an approach to learning and disability which suggests that diverse neurological conditions appear as a result of normal variations in the human genome. In other words, in some opinions, autism should be accepted and embraced not treated or cured (2.) The path of arriving at autism is different for everyone.  For some, autism and symptoms are present at birth.  For others, they arrive at autism after a developmental regression and loss of skills.  Others watch as social issues become an Asperger’s diagnosis; as a child ages, these deficits affect learning and life.   While the arrival of the diagnosis may vary, children and adults are diagnosed as the same under the umbrella diagnosis of autism defined by the DSM 5 (3.)  Despite this standard of diagnosis, I can state that within my 7 long years living with a child diagnosed with autism, I have never met a child who has autism like my child’s autism.

I have served the autism community since Matthew’s diagnosis in 2007.  I am a proud volunteer at TACA and serve as a mentor to other families on the autism journey.  I’ve completed triathlons and have ran races to benefit Autism Speaks.  I believe strongly that as individuals and groups, we all have a role to play and a way to help.  Our individual experiences drive our advocacy.  For our family, it is the consistent lack of access to medical care we have encountered since Matthew’s autism diagnosis and how we can fix this for the 1 in 88 families receiving a diagnosis today.

My son is currently diagnosed with viral encephalopathy, autism, petit mal seizures, severe reflux and prime immune deficiency.  The path to learn about his health has been seven years long and involved four medical centers, half a dozen doctors, and a myriad of testing.  Accessing care from experts has been a long road of me fighting to get my son care and hearing back: “kids with autism have x issues.  We don’t know why and we don’t treat this condition in autism.”

My son has had gastrointestinal issues since his diagnosis and finally last year was diagnosed with severe reflux.  The gastroenterologist stated, “He must be retching after every meal?” When I replied no, she was surprised.  I told her Matt has a high pain threshold and has probably figured out a coping mechanism for the pain.  After treating his reflux, Matt has gained weight, grown a few inches, and is in less pain.

A few years ago, we signed up for a clinical trial on sleep disorders in children with autism because Matt struggles with staying asleep all night.  The doctor told me after the first hour of an EEG that my son was having abnormal discharges that would be categorized as petit mal seizures.  He asked me if I knew he had seizures.  I shared that I suspected he was having seizures but was unable to get our neurologist to order an EEG.  Accessing an EEG through that clinical trial, getting a diagnosis, and treating seizures have changed Matthew’s life.  His attention improved, hyperactivity reduced, and he became calmer.  We’d lost years experimenting with ADHD drugs to help treat Matt’s hyperactivity.  No drug ever worked but with the introduction of seizure medicine, we saw great improvement which has improved his ability to access school and therapies.

In reflecting, I decided my goal was to help families like mine access medical testing and treatment thru a standard of care for Autism.  My first step was to spend some time this year learning about the IACC (4) and how this could be achieved. This standard is critical because our children do not present with typical symptoms of conditions and without these symptoms, parents cannot access testing and treatment.  I provided public comment to the IACC in April of 2013.  I worked for hours on my comments and submitted them by the due date.  Upon arriving at the session, we were told there were nine people providing public comment.  We were asked to shorten our comments and provide the bullet points.  I spent my morning listening to presentations and shortening my comments.  As I walked to the podium and stood in front of the panel of well intentioned physicians, advocates, parents, and adults living with autism, I saw the spectrum.  I realized I was delivering my comments to the spectrum and trying to get everyone in that room to agree with me would be impossible. I could see the follow up questions – “I am an adult with autism and don’t want to be subjected to an EEG.” “My child’s autism is a gift and I don’t feel he has any medical issues.”  After quickly realizing that, I decided to focus my comments on access and choice.  I wanted families with a diagnosis of autism to have access to medical testing for common co-morbid conditions.  By the end of my two minutes, I could see that I had lost some in the room.  I ended with a plea for families like mine to get help, smiled and asked if I was in the right place.  My smile and laugh got the attention of the head of the IACC who assured me that I was.  I was in the right place, a greatly divided one representing the wide spectrum of people living and caring for those with autism. How can we make progress with this wide spectrum?

The answer is subtyping.  I strongly believe that the first step to improving the divide in our community, improve treatment and supports is subtyping.  Autism Spectrum Disorder is too broad of a diagnosis.  Through subtyping, we will find common ground, peace, and action.  Without subtyping, we would have never developed drugs and treatment for the many different kinds of cancer that exist today.  For example, the treatment for prostate cancer is very specific and works well with that kind of cancer.  If you met a person suffering from brain cancer and things were not going well, you would not offer up your prostate cancer treatment.  You’d respect that each cancer was different, hold your tongue and keep a good thought for the person.  In Autism, we could subtype based on functioning level (high-medium-low), regressive or non-regressive (pending on whether there were any skills lost), and by underlying medical conditions such as mitochondrial disease or dysfunction, persistent infections, immune dysregulation, seizure disorders, gastrointestinal issues, etc (5.)

If autism was subtyped, we’d meet a person with high functioning autism and as they described their treatment through therapies, their challenges in social situations, and wish them well in their journey.  If you met a child like mine, you’d learn about an autism subtype that is moderately functioning, started with regression, and has many underlying medical issues like viral encephalopathy, autism, ADHD, petit mal seizures, gastrointestinal issues and prime immune deficiency.  You would listen to the treatment required, acknowledge its severity, and wish us well in our journey.  You wouldn’t listen and then recommend social skills classes.

My son Matt’s autism presents many challenges to our family that greatly affect his life daily.  These challenges can be significant like his inability to sleep or his required IVIG treatments to support his impaired immune system.  When Matthew regressed, his sensory issues had the most profound effect on his life.  He sat in his bedroom closet for a month in the dark wearing the one pair of sweatpants he could tolerate.  His sensory issues have been resolved through diet and therapy but his severe communication deficits impact his world significantly.  Matthew is happy and can be out and about in the community with us. He enjoys movies, restaurants, skiing, and the beach.  He can go to Disney World and say thank you to the barista at Starbucks.  He does not have friends.  There are special needs activities he can attend like karate or soccer but most require an aide.  His therapy and medical expenses rival private school tuition in our DC suburb, yet without the prestige of a special blazer or coveted bumper sticker for our car.  As a family, we have prioritized Matt’s care as the most important thing we do and are grateful we can provide such strong support.

Despite all the support we provide, the struggle of Matthew’s autism is intense and not to be celebrated.  His lack of ability to communicate incites frustration, anger, and self-injurious behavior.  If Matthew does not move forward from his current state, he will never live independently or have a job.  Matthew’s autism manifests in a way that is detrimental to his life.  As a parent, I would never celebrate diabetes or epilepsy.  I’d want help, a solution, and a path to improvement.  When I meet a family with a child or adult who has Asperger’s or high functioning autism, I am always respectful.  I acknowledge that every person’s journey has its challenges.  When I meet an adult who is outraged at the idea of a cure for autism, I truly appreciate their thought and realize that we may be labeled the same but we are different.  I celebrate Matthew and what he has overcome. I am so proud of him, but I do not celebrate his label.

Autism subtyping needs to happen now.  We can then say that high functioning people with autism have special skills, gifts, a better chance at independence and create supports for this group like college programs, jobs, and social skill opportunities. These individuals could also help educate the neurotypical population about high functioning autism and work towards a goal of acceptance.  By acknowledging their autism subtype, we would exclude them from conversations that don’t pertain to their type of autism.  This will help us to craft programs and legislations that would not infringe on their lives, rights, or experiences.  For example, we could say that children and adults with lower functioning regressive autism including seizures and other serious co-morbid medical issues are ones who need help and support of varying levels.   This would include medical treatment and putting an action plan together to help. They deserve immediate help and proper treatment.  We would hopefully devise best practices of medical treatments and therapies to support them.  I would hope then that when an announcement about curing low functioning autism with seizures, gastrointestinal issues and other serious co-morbid medical issues comes through, the individuals in the higher functioning spectrum would think a good thought and wish us well in our journey.  I know I would do the same for them.

We should work together to find solutions for those living with autism that desperately need them and enjoy those in the spectrum who are able to function, work and live productive lives. Because one thing we do know about history is that united we stand, divided we fall and no one getting help is not the answer.

References

1)      http://www.tacanow.org/family-resources/latest-autism-statistics-2/

2)      Neurodiversity http://en.wikipedia.org/wiki/Neurodiversity

3)      DSM 5 http://www.tacanow.org/news/the-controversial-dsm5-has-been-released-how-to-safeguard-your-childs-services/

4)      What is IACC? http://www.tacanow.org/blog/what-the-iacc-must-consider/

5)      Children with autism have other health issues https://www.tacanow.org/blog/many-children-with-autism-have-other-health-problems/

Editors note:  thank you Matt’s mom for the great blog and volunteer efforts on behalf of families living with autism. I am honored to work with you for a common goal. ~ Lisa

Matt and Ali

8 Comments Add yours

  1. Danni Otto says:

    I think she’s correct in that creating ‘sub types’ of autism would greatly improve the services & supports necessary to treat individuals with autism as “individuals” and not group them all together under the “spectrum”. This is what our policy makers need to hear.

  2. Janice Kern says:

    Sub-typing! I love your explanation of levels of functioning and yes, they can all be respected. The comparison to cancer treatment should be helpful to many with their understanding of why sub-typing would help, not harm, individuals and families living with autism.

  3. Jody says:

    My issue with those that argue for neuro-diversity who have autism is this, if it ain’t broke don’t fix it. For those living functional lives who have found their stride with autism, I say bravo! But for so many who aren’t doing so well, the fecal smearers, the kids who destroy the house and cause bodily injury to self and others…well I can’t imagine anyone arguing that this is a state anyone desires to live in. I get it. Autistic people have brought so much genius and amazing to our world, why would we fix that?!?! I agree! Ask any mom like me though for example ,who doesn’t get to spend the day w my “savant” son playing Chopin or making Lego formations. My son is 15 and in a grown mans body but is a child. And it is not fun. Or something I wish we could keep bringing forth here on our planet.

  4. Joanna McGowan says:

    Great article Ali. I hope something like this happens in the future, so that all of our kids have better access to whatever they need. Thanks for writing this, and blessings to you and your family.

  5. nhokkanen says:

    Bravo! Thank you for discussing some of the painful medical conditions that are making many children, teens and adults on the spectrum physically and emotionally miserable. We all must lobby for better access to out-of-the-box health care. For doctors to send patients out the clinic door with only a psych med script is malpractice.

  6. Incredible blog Ali. Thank you for taking the time to write it.

  7. Susan says:

    Thank you for this wonderfully written blog post.

    We are part of the autism community with our son, six-year-old Liam.
    Liam falls into the regressive autism category, considered severely affected, non-verbal.

    It has been very difficult for our family and friends to be supportive and understanding towards our situation as none of them have kids like ours.
    The closest comparison we have are two kids with high functioning autism whom have the savant like abilities. Their spectrum issues are mostly social and behavioral. They are in mainstream school, are part of sorts teams, create their own online applications, read, write beautifully and so on.

    These parents don’t seem to get why we can’t go to the Nutcracker with them, or Sky High sports for birthday parties. They don’t understand why Liam can’t attend a typical public school. We hear over and over again, “The school should provide an aide, then he could go to kinder, right?”
    If it were only that easy.

    I truly believe, especially after reading this very poignant post, that Autism sub-typing will greatly improve the lives and expectations of those living at varying places on the spectrum.
    Your comparison to cancer treatments really brings it all home.

    I will be sharing this with our loved ones.

    Thank you again for this post.

    Susan
    Liam’s Mom

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