Are Co-occurring Conditions Part of Autism?

Photo © NASA Goddard Space Flight Center | Flickr / Creative Commons
[image: Photo of two neutron stars ripping each other apart.]

Maxfield Sparrow
unstrangemind.com

Sometimes when I’m talking with someone about autism it feels like we’re talking about two different things. For example, I’ve had countless conversations that go something like this:

“You’re nothing like my child. My child has the serious kind of autism,” they might open with. 

“Autism is serious stuff,” I respond. “It’s important to take it seriously.” 

“No, I mean my child has the autism with digestive stuff and physical involvement. The severe autism.” 

“I have intermittent gastroparesis that has sent me to the hospital multiple times. I have a connective tissue disorder that has caused pelvic organ prolapse. These things aren’t autism.”

And it’s the truth: the co-occurring conditions we cope with are not autism; they are the “genetic hitchhikers” that love to travel with autism. Even being non-speaking—a trait that some people view as the true core of autism—is due to conditions that more frequently occur among those of us with developmental disabilities such as autism or cerebral palsy. However it is not autism itself that prevents speech, but rather these “hitchhikers” like apraxia and extreme sensory processing issues.

Questions immediately arise: how many of these commonly co-occurring conditions are there? How prevalent are the conditions that tend to accompany autism? And if autism is not simply a cluster of co-occurring conditions, then what is it?

The August 2018 issue of The Journal of Autism and Developmental Disorders is publishing a paper called Prevalence of Co-occurring Medical and Behavioral Conditions/Symptoms Among 4- and 8-Year-Old Children with Autism Spectrum Disorder in Selected Areas of the United States in 2010, written by researchers from the Center for Disease Control and the University of Arizona.

While this paper barely brushes on that third question: what is autism really? (“Autism spectrum disorder (ASD) is a group of neurodevelopmental disorders characterized by deficits in social communication and interaction and the presence of restricted and repetitive patterns of behaviors, interests, and activities (American Psychiatric Association 2013).”), it does go a long way toward addressing the first two questions about the number and prevalence of co-occurring conditions in autistic children.

How the Study was Conducted

The study collected information in the Autism and Developmental Disabilities Monitoring Network (ADDM) from the calendar year 2010. ADDM is a project that has been tracking eight-year-old autistic children since 2000, and added four-year-old children, starting in select areas, in 2010.

The researchers collected their data by looking only at the five sites that had included data from four-year-old autistic children that year (Arizona, Missouri, New Jersey, Utah, and Wisconsin). They pulled all the records of children diagnosed autistic and verified the diagnoses using DSM-IV-TR criteria (that being the standard diagnostic criteria used in 2010).

The paper claims this study is the first one to look at two age groups of autistic children using a large sample and studying a diverse group of co-occurring conditions. One of the biggest things the researchers discovered was that eight-year-olds had more co-occurring conditions than four-year-olds, and more than 95% of the children had at least one co-occurring condition.

The researchers report that the wide variety of co-occurring conditions and the great diversity among the children, as far as what patterns of co-occurring conditions each child exhibited, often contributed to difficulties in accessing autism diagnoses. They noted that a very small fraction of children had no co-occurring conditions. While they could not explain why autism tends to come along with so many, varied co-occurring conditions, the researchers noted that the varying patterns of co-occurring conditions make autism very heterogeneous—that is to say, each autistic person has a specific pattern of strengths and weaknesses that is often quite different from other autistic people.

This pronounced variety can make it harder for people to get diagnosed as autistic, especially early in life when there is no single marker of autism or autistic behavior. The authors suggested including co-occurring conditions in the autism screening procedures, in order to catch more autistic children who are slipping through the diagnostic cracks. The variety also cautions against seeking one-size-fits-all systems to address autistic needs.

Some Statistics From the Study

The data was analyzed statistically and measures were taken to mathematically account for the following factors: sex, race-ethnicity, maternal education, and geographical location of the study. All statistics I am mentioning in this article are ones that were statistically significant—that is, the differences were large enough for the researchers to pay attention to them as actual signals, rather than just random differences that don’t mean much.

The researchers looked at the following eighteen items that they determined to be the most common co-occurring conditions found among autistic people:

1. Developmental disability - cognitive
2. Congenital conditions (cerebral palsy, encephalopathy, vision impairment, hearing loss)
3. Self-injurious behaviors
4. Sensory integration disorder
5. Developmental regression
6. Epilepsy/seizure disorder
7. ADHD
8. Oppositional Defiant Disorder
9. Anxiety
10. Aggression
11. Language disorder
12. Sleep abnormalities
13. Developmental disability - motor
14. Genetic conditions (Down syndrome, Fragile X syndrome, Tuberous sclerosis)
15. Mood disorder
16. Developmental disability - adaptive
17. Abnormalities in eating, drinking
18. Temper tantrum

One thing they found was that some co-occurring conditions (gastrointestinal problems, sleep problems, and epilepsy) seemed to intensify the core traits of autism while others (ADHD, ODD, and aggression) appeared to “mask” autism traits, often resulting in a later diagnosis.

They also found that autistic children with intellectual disability were more likely to be diagnosed before age six than autistic children without intellectual disability.

The eight-year-olds had more cases of twelve of the above eighteen co-occurring conditions, but only eight of these were statistically significant: ADHD, Oppositional Defiant Disorder, anxiety, aggression, language disorder, sleep abnormalities, motor disability, mood problems.

The eight-year-olds had an average of 4.9 co-occurring conditions, and 98% of them had at least one co-occurring condition.  The four-year-olds had an average of 3.8 co-occurring conditions, and 96% of them had at least one co-occurring condition.

The statistically significant conditions that caused children to be diagnosed earlier were: Developmental regression, developmental disability - adaptive, abnormalities in eating and drinking, developmental disability - cognitive, temper tantrums, developmental disability - motor, and self-injurious behaviors. Those conditions that caused children to be diagnosed autistic later were: ADHD, oppositional defiant disorder, and anxiety.

The most prevalent co-occurring conditions according to the study were: Mood disorder (75.4%), Anomalies in eating and drinking (61%), Temper tantrums (56.5%), Aggression (55.40%), and Sleep abnormalities (40.7%).

Something that surprised me about the study were the co-occurring conditions with prevalence far lower than I had expected to see. These include: Developmental disability - cognitive (present in 15.6% of the autistic children in the study), Self-injurious behaviors (27.3%), Sensory integration disorder (10.1%), Language disorder (35.5%), Epilepsy (3.6%), and Anxiety (12%).

Analysis and Discussion of the Implications of the Study

The findings of this study could change the way autism is understood and diagnosed, which is important. While other researchers have looked at co-occurring conditions in autism, this is the first thorough survey of them, even though it is not entirely representative of the entire United States since the sample was not chosen completely randomly.

Before this study, the only academic writing I was aware of that looked at co-occurring conditions in such depth is Polly Samuel/Donna William’s work on the “Fruit Salad Theory of Autism” which is found in detail in her book The Jumbled Jigsaw, or in summary in her blog post “What is Autism?”

Many Autistic activists express the importance of viewing co-occurring conditions as something separate from autism itself. As I mentioned above, I sometimes call them “genetic hitchhikers” because the anxiety, stomach problems, sleep issues, etc. are not autism, and are found among people who are not autistic, though we seem to have them with more intensity and/or higher frequency than the general population. These co-occurring complications can make the overall picture of autism look very different from person to person, and may necessitate a lot of support, accommodation, and assistance for us to navigate and manage.

People who have a hard time understanding why we say we are proud to be Autistic and don’t want or need our autism to be taken away often feel that way because they have defined “autism” as “the cluster of co-occurring conditions experienced by the autistic people I know or have heard of.” Research like this new study important for the implications in the medical world, with respect to diagnosis and therapies, but it’s equally important for those of us in the lay community who are trying to communicate across a gap of understanding—a gap caused by people defining autism in radically different ways.

Hopefully this research and similar research that will follow and build upon this foundation will help those of us in the Autism community (that community made up of everyone from Autistic people to our families to therapists to researchers and beyond) to agree upon shared definitions of autism. This will be a necessary first step, before we can really get down to meaningful dialogue across the gaps in our lived experiences: the lived experience of being autistic and the experience of loving or working with someone who is. We in one or more of those groups can and very much should seek to unite with the others because we are stronger together. Coming to a place of mutual understanding of the foundational nature of autism will start us down that path, toward joining our forces to change the world.

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When Autistic People Have Epilepsy

Photo © Ivo Dimitrov | Flickr / Creative Commons
[image: Illustration of a human brain, in profile,
made of colorful cogs in various sizes and shapes.]

Maxfield Sparrow
unstrangemind.com

[Content note: This post discusses suicidality, mental health, and death.]

In the early 1990s, I was engaged to a man with epilepsy. He had tonic-clonic seizures and he was a big guy, so I was always alert to the possibility of an episode. I knew there were stores we couldn’t shop in, and roads I couldn’t drive down. I caught his body and lowered him safely to the ground more times than I can remember. I guarded him from the pressing crowd of curious onlookers when he came around after a public seizure. And I worried, feeling helpless, when his medication levels were off, and he had seizure after seizure.

I can’t know what it is like to have epilepsy or to have a child with epilepsy, but I can draw on the empathy I felt for what Bear went through. I'd also like to put a call out to other autistic writers: we need more essays to help other autistics with epilepsy and parents of autistics with epilepsy. (I will write what I can—we need you to write what you live.)

Epilepsy organizations and doctors have drawn attention to the interplay between autism and epilepsy on many websites, and in many books. The Epilepsy Foundation has a page on their site titled, “Epilepsy and Autism: Is There a Relationship?” (The short answer: yes, there is definitely a relationship between epilepsy and autism.) The Epilepsy Foundation underlines that fact on another page for medical professionals, titled “The Complex Relationship Between Autism Spectrum Disorders and Epilepsy,” which says, “There is a strong association between autism spectrum disorders (ASD) and epilepsy.”

While 1% to 2% of typically developing children are diagnosed with epilepsy, it is estimated that as many as a third of autistic children have epilepsy. The Epilepsy Foundation calls that “(a little) more likely to have epilepsy” but I think a jump from 2% to 33% is a far more significant shift than “(a little).” Not only do autistic children have a much higher rate of epilepsy than the general population, but a 2011 study of children with epilepsy found a 5% rate of autism (compared to the 1% to 2% range of autism in the general population) among children diagnosed with epilepsy (and mentioned an older study that found a 14% autism rate among children with epilepsy). Additionally, an estimated 25% of autistic people develop a seizure disorder at puberty, after being seizure-free or otherwise undiagnosed throughout childhood. It is also well-documented that epilepsy is a leading cause of death for autistic people.

The Epilepsy Foundation has stated that, “epilepsy associated with ASD does not change the evaluation or management of seizures,” however the higher co-occurrence rates of epilepsy and autism indicate that considering the two together and talking about how one affects the other is crucial.

Depression

Depression and anxiety are so important that I dedicated an entire chapter to them in my last book, The ABCs of Autism Acceptance. I cite research statistics about autism and depression in that chapter such as the British study that found that 71% of autistic children had a mental health issue while 40% had two or more mental health issues. Autistic children have 28 times as much suicidal ideation as non-autistic children.

Add seizures to the mix and those figures take a sharp turn upward. The Epilepsy Foundation reports that 20% of children with epilepsy have thought about suicide. Obviously the combination of autism and epilepsy dramatically increases the risk of depression. After factoring out pre-existing psychological disabilities, the suicide rate among people with epilepsy is twice as high as that among people without epilepsy.

Keep a watch for the signs of depression and don’t be afraid to talk to your child about depression. Remember that autistic people don’t always show the same signs of depression as non-autistic people and often we need depression treatments tailored to us.

Learning Disabilities

Half of all people with complicated or difficult to control epilepsy have psychological comorbidities including learning disabilities, for example the rate of ADHD among people with epilepsy is twice as high as it is among the general population. Many of the traits of ADHD overlap with autistic traits, so this is another place where epilepsy and autism can combine to increase the likelihood of executive function issues.

Emotional Regulation

Many autistic people struggle to regulate our emotions. Emotional regulation can be a struggle for people with epilepsy, too. If your child is autistic and has epilepsy, any burst of rage might genuinely be out of their control. Epilepsy also can cause a wide range of emotional distress. In addition to the situational depression that can come from struggling to control seizures, there is a condition called interictal dysphoric disorder (IDD) that is marked by depression (dysphoric) between seizures (interictal) and worsens when seizures are less controlled.

I spent some time reading public Twitter messages from autistic people about seizures and noticed many comments about depression, anxiety, and anger occurring before and/or after seizures. If your child is autistic you’re probably already used to discerning the difference between meltdowns and non-meltdown expressions of anger. If your autistic child also has epilepsy, you need to watch for epilepsy-related anger as well. Understanding your child’s emotional landscape becomes more complicated with both autism and epilepsy in the mix.

Further Resources

On the Web

• A Guide to Managing Epilepsy in Autism, from Autistica: www.autistica.org.uk/downloads/files/Epilepsy-autism-E-LEAFLET.pdf
• A Review of Traditional and Novel Treatments for Seizures in Autism Spectrum Disorder: Findings from a Systematic Review and Expert Panel: www.ncbi.nlm.nih.gov/pmc/articles/PMC3859980

Books

• Silently Seizing: Common, Unrecognized and Frequently Missed Seizures and Their Potentially Damaging Impact on Individuals With Autism Spectrum Disorders by Caren Haines, RN: www.amazon.com/dp/B00A4HPJCI

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Autism and Psychiatric Medication: Caution Advised

Photo © RoseFireRising | Flickr / Creative Commons
[image: Mandala made out of different colored and shaped pills, on a dark blue background.]

Kit Mead
kpagination.wordpress.com

[Note: This post discusses anxiety, medications, and chemical restraints. It is meant to caution against overmedication and about risk factors in medication for autistic people, with the understanding that many autistic people rely on psychiatric medication for their health and well-being.]

I would need more than two hands to count the psych meds I’ve been given.

There are enough that I don’t remember all of them; it started in the first grade. Some were just regular ADHD meds—which I needed—not psychotropic. As years passed, others were anti-anxiety SSRIs, and then antipsychotics; many well before I’d hit the end of middle school (these include Risperdal, Paxil, and Wellbutrin).

While I was not diagnosed autistic until I was 14 or 15, the logic under which these drugs were prescribed to me was the same as for those diagnosed autistic: The psychiatrists likely said the medications would manage my anxiety and my outbursts. (I now know the outbursts occurred from a trauma history, and having a hard time communicating.)

But the medications were like a merry-go-round. Some effectively sedated me, others made me uncontrollably irritable. Abilify is proving difficult to get off of, even though I'm experiencing the side effect moderate akathisia, which is “a movement disorder characterized by subjective feelings of internal restlessness or jitteriness with a compelling urge to move. Patients describe ‘nervousness, inner tension, discomfort, restlessness, itching, and/or an inability to relax.’” The result is repetitive, unwanted movements that primarily affect the legs. Untreated, akathisia can lead to worsening suicidal ideation, agitation, and aggression.

I found out I wasn’t alone in the overmedication department in the 2010s, when I found autistic community, and read some anecdotal experiences. For this article, I collected information about autistic people's experiences with medications in an informal Google Forms survey.

One survey respondent, Alex, has been on 11-15 different psychiatric medications between the ages of 4-18. Cat says they’ve been on 16 or more so far. Survey taker “12-year-old boy” states he was around four years old when he was first given meds. And S.L. and Cass report they were around eight years old when they started meds. Multiple survey respondents noted they had been on four or more medications at one time.

The statistics on psychiatric medication and autistic people

I discovered scientific research on the heavy medication of autistic people in 2016, while I was looking into how autistics interact with the mental health care system.

In one study, researchers found in 2013 that out of 33,565 children with ASD, 64% were on at least one psychotropic medication, 35% were on at least two, and 15% were on at least three. The authors concluded that,

“Despite minimal evidence of the effectiveness or appropriateness of multidrug treatment of ASD, psychotropic medications are commonly used, singly and in combination, for ASD and its co-occurring conditions. Our results indicate the need to develop standards of care around the prescription of psychotropic medications to children with ASD.”

In 2008, The Interactive Autism Network (IAN) published a breakdown of psychiatric medication types used as autism "treatments": Of the more than 5,000 parents surveyed, 31% reported that their autistic children were taking at least one psychotropic drug, and 6% were taking three or more.

And in a 2014 study on prescribing in primary health care, researchers note “Drug surveys and studies of health insurance claims databases conducted in the USA have shown that over time more psychotropic drugs (and in particular antipsychotics, antidepressants and stimulants) are being prescribed to children, young people and adults with ASD…” and there is “limited evidence to guide psychotropic medication use in the ASD population.” A 2013 article concurs about the lack of evidence.

The dangers of misusing medication on autistics

Judicious restraint needed

The research cited above shows that medical professionals should be judicious in prescribing medications. Yet the authors of the 2014 primary health care study condone the use of aripiprazole (Abilify) and risperidone (Risperdal), which are both antipsychotics. The article states that these drugs have demonstrated efficacy in treating irritability, aggression, and self-injurious behaviors in autistic people.

My personal experience is that I was prescribed Abilify at age 16, presumably as an adjunct for my SSRI (an antidepressant drug type), and when I then developed akathisia, I was simply prescribed added muscle relaxants. As Risperdal caused me uncontrollable anger and irritability, I was taken off of it. These two drugs are FDA-approved for treating irritability in autism, the only two approved for such use, including in children. Other uses of psychotropic drugs “for autism” are off-label.

Side effects

Most, if not all, antipsychotics are less than ideal medications: they can be sedating, and can also cause serious movement disorders such as tardive dyskinesia.

In discussing antipsychotics in my survey, Alex wrote: “I was really disconnected from my emotions while I was on [Risperdal] for most of my childhood. It also caused tardive dyskinesia.” They were misdiagnosed with bipolar disorder at age four.  S.L. noted drastic weight loss, fainting, and appetite disturbances that were not taken seriously as a side effect of antipsychotics.

A study led by Dr. Sinead Brophy and published in 2018, found that, “Antipsychotics are prescribed predominantly to those with intellectual difficulty/autism and there is evidence that they can increase rates of respiratory disease, epilepsy, diabetes for all, and of hospital-admitted depression and injury.” Even for those whom the drugs are supposedly designed, they have risks of inefficacy and provoking serious relapses. Some studies have also found there is an increased mortality risk from antipsychotics. While some people feel antipsychotics help them and choose to be on them, these drugs are prescribed to autistic people at high rates despite the risks.

The anti-depressant SSRIs should also be used with caution, as they too come with a host of side effects, some of which autistic people may experience intensely. We can also experience confusing signals from our bodies—like alexithymia—and communication barriers. This is potentially dangerous if negative side effects occur. SSRIs can also be very difficult to quit.

Owl, one respondent to my survey, says the SSRI Welbutrin impacted their memory. A four year period of theirs is “very foggy and chronologically hard to distinguish.” In addition, “Elavil triggered a bunch of weird physical reactions that sound made up. Cymbalta just nearly killed me and tore apart my personality entirely. Looking back I seemed prone to really strange and bad side effects that should have been of concern to at least one of my doctors.”

What reasoning goes into prescribing autistic people these medications?

According to the parents

According to IAN’s report, 62% of parents thought the use of a psychotropic medication on their child came with low risk, and 80% felt their children improved on the medications.

It is not clear how parents decided there was low risk, or determined improvement, but possibly it includes the criteria listed in the report's Table One, which notes common reasons that determined which drug an autistic child was given: Antipsychotics for “irritability, tantrums, aggression, and unstable mood”; antidepressants for “stereotypic (repetitive) behaviors, unstable mood, anxiety, and depression,” and anxiolytics (anti-anxiety meds) are used to treat “anxiety.”

Misdiagnosis, control and abuse, suppressing autistic traits

Survey respondent Cass believes the purpose of the medication given to them was control: They were considered not just autistic, but a “bad kid.” Respondents “12 year old boy” and Kem reported being prescribed drugs to shut them up and keep them still. Kem also received a misdiagnosis of bipolar disorder, as did Cat—who misdiagnosed with multiple forms of bipolar, along with borderline personality disorder. S.L. says that factors included their methods of communicating, which included “lack of verbal communication,” and age.

Alex reported that in addition to gender and age factors,

“I’m pretty sure the reason I was given medications was to make me more compliant. Risperdal in particular seems like it was chemical restraint. My parents were abusive and obsessed with control. No one listened to me about side effects or whether I thought the meds were actually doing what they were supposed to do.”

Owl reported that, upon seeking autism and ADHD assessments, they were “continually dismissed and treated for depression and anxiety despite none of the medications helping.” They chalk most of their negative experience up to bias around their gender presentation reading as female, along with their nonbinary and queer identities. “It seems their logic was that: I thought something was going on with me, ergo I was 'anxious' about it, and it was so it had to be ‘depression,’ which is easier than delving into anything more complicated.”

A look into long-term impact

Autistic people have been fighting the use of antipsychotics on us for years. For example, in 2011, the Autistic Self Advocacy Network issued a call to action against the use of chemical restraints on people with intellectual and developmental disabilities (I/DD). The organization Autistic People Against Neuroleptic Abuse (APANA) was active in the 2000s, and now exists as a web archive. Based in the UK, APANA worked to, among other things:

• “End routine prescribing and re-prescribing of neuroleptics for ASD
• Reduce current neuroleptic prescribing for all people with learning disabilities, in a gradual and carefully monitored manner to lowest feasible levels—zero where possible
• Raise awareness of side-effects and withdrawal effects.”

In 2017, the FDA hosted a “Patient-focused Drug Development for Autism” public meeting. I was one of only three self-advocates on the panels. We spoke of clarifying co-occurring conditions from autism, and assessing what resources were needed there. We asserted that we didn’t want “treatments” that simply shut down our autistic traits. We wanted better communication tools, help with movement and task initiation as well as executive functioning, and supports for community living.

There is a need for quality of life supports as opposed to automatically choosing medications “for autism.” It’s not just the direct effects of the drugs—there’s a diversion of funds that could be better spent on researching supports. But the direct effects of psychotropic drug cocktails on autistic people can be indelible and devastating.

Survey respondent Cass’s academic career was ended by the effects of the antipsychotic Geodon. They just want to be able to write again. Kem doesn’t trust medical professionals anymore. Neither does Alex.

Cat reflects, “If I had known that my differences were autism, I could have built a life and career around something more compatible with my actual needs.” They have instead experienced 15+ years of chronic and debilitating stress-related pain.

Owl related that “I experience neurological stuff. My physical health is not good. But mostly,” their last answer reads, “it's that my life has been stagnant, gone nowhere, fighting for support I need and am still not getting. But pills, oh have I got pills.”

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