What Is Autism?

Adam Lanza, the 20-year old shooter who took the lives of 20 children and 6 adults at Sandy Hook Elementary in Connecticut after murdering his mother and subsequently taking his own life, has brought autism to the forefront.  Not mental illness.  Autism.  Why? Because the media is announcing far and wide that he apparently had Asperger’s Syndrome.  Adam Lanza was an Aspie.  Now, I know that correlation does not imply causation, but, in the wake of such a national tragedy, people want a reason.  They need a reason.  For God’s sake, why?!

My little voice on my little blog may not make one iota of difference, but I want to take a moment to very simply explain autism.  What is autism? Frankly, no one knows.  That’s right.  No one knows what causes autism although we are learning more.  Why do I even bother to blog about this? Because autism spectrum disorders are essentially what I do for a living.  I am a co-owner of a corporation that is part autism “think tank” that collaborates with hospitals in North America and universities, and the other part produces materials for teachers, professionals, parents, and children on the autism spectrum.  Also, I have an autistic daughter, and my business partner (and dear friend) is also on the autism spectrum as is her daughter.  This is a subject that I do know a bit about although, it seems, never enough, and it’s personal to me.

So, what’s the deal? Why do we not really know what autism is? Because we don’t know what causes the symptoms.  What do we know? It’s a neurobiological disorder, but we can’t run any medical tests to detect it.  Let me explain to you how autism is diagnosed.  Firstly, autism is officially called an “autism spectrum disorder” because the symptoms range from ‘high functioning” to “mid functioning” to “low functioning”.  This functional part of autism lies with behaviors, communication, and activities of daily living (ADLs).  How functional a child is determines where they fall on the autism spectrum.  Autism spectrum disorders affect three parts of a person’s life:

  • social interaction
  • communication both verbal and nonverbal
  • behaviors

There are three main types of ASDs although the DSM-5 will be changing the labeling:

  • Autistic Disorder
  • Asperger’s Syndrome
  • Pervasive Developmental Disorder-Not Otherwise Specified (PDD-NOS)

The diagnostic procedure involves observation by clinicians, parental reports, severity of behaviors, neuropsychological reports, age of onset, interference of behaviors, interactions, and communication issues with ADLs, and other criteria.

My daughter Milly was diagnosed with Asperger’s Syndrome at the age of 4 by the Early Intervention department of our school district.  Strangely enough, our school district has a stellar EI department.  To be honest, she was  a nightmarish baby.  Milly was my fourth (and last) baby.  She was born screaming, and she didn’t stop screaming for two years.  I’m not embellishing.  I took her to the pediatrician numerous times in an effort to find a solution.  Did she have acid reflux? She did.  Was she in pain? Was my breast milk tainted by something? I changed my diet.  She was miserable all the time.  The only time she wasn’t screaming was when she was attached to my boob which, as it turns out, was quite often.  She didn’t sleep either.  So, she ended up in bed with me attached to my breasts–all night long.  Wiggling.  Crawling.  All over me.  For four years.  She refused to wean.

By the time she could sit up on her own, she began building walls around herself out of the Lego Duplo blocks.  If one of her sisters tried to play with her, she would scream louder.  Why? Someone touched the Duplo wall.  A 7-month old infant building Lego walls around herself in a recognizable pattern.  The tales I could tell of her obsessions, her behaviors.  And the kicker? She could speak at 18 months.  Full sentences.  The next time you meet an 18 month-old baby, imagine them having a conversation with you: “I quite liked my tea.  It was delightful.”  Direct quote.  I knew something was wrong.  If she wasn’t screaming, she was nursing.  If she wasn’t nursing, she was speaking to me like a tiny professor.  When she was 3-years old, she wanted me to read her novels.  I was reading Charles Dickens to her, and she would sit for hours completely engrossed.  Then, she’d have some massive meltdown.

When I finally found a developmental pediatrician, he diagnosed her as having three separate anxiety disorders, Sensory Processing Disorder (SPD) or Sensory Integration Disorder,  and called her “artistic”.  He completely misdiagnosed her.  Why? Because she was a girl.  Had she been a boy, she would have received a correct diagnosis.  There is still a bias in the medical community around girls having ASDs because historically more boys have ASDs than girls.  She has since been diagnosed medically as autistic as well.  This leads me to a crucial point.

When you meet an autistic person, s/he will most likely have co-morbid conditions.  Milly has SPD as well as profound anxiety.  In fact, many, many ASD people have SPD.  There is some talk in the therapeutic and medical community about SPD possibly being a form of autism.  It’s almost always present in one form or another where an ASD is diagnosed as is some form of anxiety.  What else will you find? Oftentimes, you might find depression.  There are also cases of bipolar disorder, too.  All this is to say that an ASD is rarely diagnosed alone.  There are usually always co-morbidities.  Did you know that autism and schizophrenia tend to run in families? What’s more, the same gene that causes bipolar disorder causes schizophrenia.  Years ago, autism used to be considered a psychotic disorder.  Of course, it’s no longer considered to be a mental illness.

What I’m pointing out is that the media is not doing its job when it sensationalizes Adam Lanza’s possible autism diagnosis because if he had autism, then he probably had a co-morbid mental illness, too, which would have most likely been the cause of his psychotic break–not autism.  Autism does not cause psychosis.  It’s not a psychotic disorder.  For a person to go on a killing spree as well as commit matricide and suicide, there would most certainly be psychosis. Apparently, that psychosis was untreated as well as that underlying condition.  Where autism possibly comes into play in this scenario is around verbal communication.  ASD people often struggle with verbal communication.  If Adam Lanza was struggling with a psychotic disorder, then he may very well have struggled with talking about it.  Because ASD behaviors can look odd, it might have been difficult to judge his slip into psychosis from his normal, everyday behaviors.  ASD people are often withdrawn and obsessive anyway.  They can be suspicious and paranoid by nature.  Self-regulation is so often a problem for ASD people so his mother may not have been able to decode his daily behaviors.  His psychotic behaviors, to her, may not have looked that different from his autistic behaviors particularly if he was wont to isolate himself and didn’t talk very much.  What would she have had to go on?

Lastly, mood and psychotic disorders often emerge in late adolescence and the early twenties.  He may have been in prodromal schizophrenia and had his first psychotic episode.  Honestly, we’ll never know, but it’s a good possibility.  The majority of schizophrenics are not violent, but Adam Lanza was raised in a home with access to weapons.  His mother also taught him how to use them because it was her hobby.  I’m not making a political statement here.  I’m commenting on the culture of his home.  It’s hard to know what a psychotic mind will do when it breaks.  Grace has never been violent a day in her life.  She is one of the gentlest souls I know, but she stabbed herself when she was psychotic.

Had I not been a mother who was constantly home, always around my children, hypervigilant because of my background, would I have recognized Grace’s change in behavior so readily? I have been told that we were lucky to have Grace correctly diagnosed so early.  I started documenting her symptoms very early because I just had a hunch.  Not all parents are like me always on alert.  It would be nice to be a more relaxed parent.  What if I were a working mother, out of the house, rather than self-employed able to be home? What if Grace were 20-years old? How would anyone know if she were slipping into mental illness if she were already “odd” and withdrawn?

I think it’s very important that we know the truth about autism, how it’s diagnosed, and what it looks like because the media is not going to do its job in properly explaining the nuances.  The media’s goal is to make sure that you watch your television.  Period.  The last thing that we need is more stigma around mental illness with autism being dragged right behind it.

I want to know what went wrong in the Lanza family that caused a 20 year-old young man to commit such a heinous act, but I also want the information and discussion around this tragic event to contribute to the greater good so that those 28 lives weren’t lost in vain and fear of those who are different or mentally ill doesn’t hold sway over a grieving nation causing alienation and vilification of innocent people.

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11 thoughts on “What Is Autism?

  1. I have been contemplating writing something about the mental health side of this, in particular stigma. I have overheard some horrific comments about mental illness and the use of medications the last couple days. It is as if some think that everybody on Zoloft or Celexa is a ticking time bomb. The misunderstandings and misrepresentations are appalling.

    • Misinformation, misunderstandings, stigma, ignorance, sensationalism, and lies–it’s all out there. Everyone has an opinion…just like assholes. Unfortunately, what is not so well understood is that when the brain is not functioning properly or is even ill, it often manifests behaviorally. That is one of the primary ways that mental and neurological disorders and illnesses are detected. Even when there’s a brain tumor or lesion, people often start behaving strangely. I know someone who has a neurotransmitter deficiency, and their behavior masquerades as autism because of it. Some epileptic seizures look quite like a mental health condition rather than something stereotypical. What about chromosomal deletions like 22q11 deletions that can cause schizophrenia and a host of other problems? We know so little about the brain compared to what we understand about the liver or the heart. The stigma that still exists around a malfunctioning brain is ridiculous and has no place in the 21st. century, but I think that it’s one of the primary reasons why it is ultimately so hard for the mentally lll to get the help they need. The federal facilities are shuttered. The states can’t do it. The educational system certainly should not be providing that kind of help, and there are nowhere near enough beds in the mental health units of local hospitals nor are there enough providers. It’s a broken system, and it needs fixing. Now. Hopefully, this horrible tragedy will illuminate that fact.

  2. This post is a good read, thanks. I’m not sure why this guy, or anybody for that matter, gets labeled psychotic though, or what the good of such a label is. More and more I see “psychotic” as meaning “not like me”. Who chooses the chosen few?

    • Well, in this case, I’m using the word ‘psychotic’ as in from psychosis which means that the level of mental/cognitive functioning is impaired to such a degree that a person is no longer in contact with external reality. That is what psychotic means. This is why ASDs used to be grouped in with psychotic disorders; it was due to theory of mind difficulties. In one sense, I can understand why, but ToM difficulties are not the same as true psychotic disorders. I’m not using the pop culture definition of psychotic which can mean anything that someone wants it to mean really. Clearly, Adam Lanza was psychotic in the proper sense of the word.

      I’m not sure why you question the proper use of the word ‘psychotic’. There is a place for it. My daughter suffers with psychosis quite frequently because she has a psychotic disorder, and i need to be able to properly describe her condition to psychiatric professionals when asked about her state of mind–“Today Grace is psychotic.” When I say that, everyone who is a part of the conversation knows what I’m talking about. Grace is not in touch with reality. Her mental/cognitive state is impaired. Okay. Where do we go to treat the psychosis? What’s the treatment plan? The problem isn’t the word. The problem is how pop culture and ignorant people have co-opted and stigmatized it. And the fact that using appropriate language to describe behaviors is now called “labeling” which it is most certainly not. If your child had an autism spectrum disorder, what would your preference be? Should we call him/her socially impaired but not autistic? If your child had a psychotic disorder such as schizophrenia, would you prefer that when s/he were paranoid, delusional, and hallucinating, running around the house, trying to get away from the people chasing him/her that we call him/her excessively imaginative and exuberant with a dash of fearfulness and aggression? Calling these very useful words “labels” is actually part of the stigmatizing of mental illness that we are trying to eradicate. Labels get you in the door. Labels get you IEPs. Labels get you help. Labels=Diagnosis=Medication=Case Managers=Resources=Support=Not being alone with a very ill child. Honestly, I think it’s time we stop using the word “label” altogether because that’s not what we’re doing at all.

  3. Philosphers have been struggling with theories of reality for thousands of years, external or otherwise. If our theories of reality don’t match up, how do we decide which one of us is psychotic? Never mind me, I’m just a holiday depressive who likes thinking about things in extreme ways.

    • Ah yes, this reminds of the discussions I’ve had about color: Does your ‘red’ look like mine? What if my perception of green isn’t yours? How do I know that my perception of green is even green? Perception is reality, and these philosophical discussions are interesting but largely academic. They are of little help where the rubber meets the road. Your implication, however subtle, is “live and let live’ regardless of what one’s perception is. This works if one moves to an island and intends to give up all contact with the rest of society, but, as we’ve seen with the barrage of news stories involving those with untreated and poorly treated mental illness, it doesn’t work practically, does it? It certainly doesn’t work within my own family. If my daughter’s brain seizes up in some way and she suddenly sees the Three Men and the Creepy Lady coming after her with firearms and swords, and she’s running, hiding, and living in constant fear, then you would advocate for such a reality? After all, it’s just one way to live, right? That’s her new reality. Never mind that she is crippled with paranoia, not functional, and completely debilitated. It is an option though–psychosis. It is one “reality”. I suppose there are philosophers who would suggest that she be left to languish. I mean, does one hear a tree fall if no one is there to hear it and all that…

      • It’s not just academic. Who’s psychotic, the Republicans or the Democrats? The atheists or the theists? There are some tenuous grips on and multiple interpretations of reality there. Maybe we can ask the fictitious “reasonable person”. But who is a reasonable person? I think I’m pretty reasonable. Not everybody would agree.

        Having three men and a creepy lady after you is no way to live, regardless of reality. If telling them to go away doesn’t work but taking an antipsychotic does, fine, they are both ways to alter reality and have a better life.

        Funny you should mention an island, because for quite a while I’ve thought it would be great to move to some random little island in Indonesia. where people go by on their boats every so often and wave or stop and teach me a few words.

      • I am going to have to disagree with you on your use of ‘psychotic’ here. People are responding to circumstances in very different ways some of which I find comical, absurd, meaningful, and just…ridiculous. For the most part, I don’t find true insanity, hence, true psychosis to be the reason why people respond or react the way they do. Fear? Yes. Willful ignorance? Yep. A case of I-Must-Fix-It? Denial? My way is better than your way? We were here first? Entitlement? Rage? Selfishness? Ego? I’m right, you’re wrong? Live long and suck it? Let’s just be friends and get along? You name it, and people react to the woes of the world for any number of reason: Money, sex, and power usually being the top 3 on the list. But, true psychosis as in stemming from an organic brain disorder like SCZ or bipolar disorder or untreated clinical depression gone terribly wrong? Are you actually asserting that Republicans, Democrats, atheists, and theists are all suffering from psychotic disorders because you disagree with their interpretations of reality? That’s what it sounds like here.

        Yeah, I’d love to believe that Rush Limbaugh has a psychotic disorder because it would explain why he’s so full of hatred towards the rest of humanity, but he doesn’t. His interpretation of reality meets his need to feel powerful and admired. Anyone would wish that the president would be assassinated to further a political agenda has a problem, but it’s not an Axis I psychotic disorder. It’s most likely a personality disorder, and that’s on the Axis II of the DSM. Nancy Pelosi? Boehner? DeMint? All these people with agendas pushing for a reinterpretation of the American (and sometimes global) reality are very much in touch with reality. How do you think a person spins it in the first place? You have to know the facts to manipulate them.

        Yes, we are surrounded by disordered thinking, but it’s not true psychosis. To believe that is to somehow give up, and that’s probably what all these power brokers want anyway. Another intelligent person gone…replaced by another ignorant sheep…

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