Violence and the natural history of Autism - so what do we know?

Ann Bauer has written four stories about her son Andrew

• July 2005: He's been doing well from age 12 to 17.
• May 2007: Andrew is 19. She tells us that he was misdiagnosed with schizophrenia, and that antipsychotic medications made him violent
• Mar 2008: She’s struggling, and still feels that the antipsychotic medications are responsible for Andrew’s worsening condition.
• Mar 2009: Andrew is dangerously violent, and his mother can’t get help in an emergency.

From Mar of 2009 (emphases mine) …

Ann Bauer on autism, violence | Salon Life

... Andrew started life as a mostly typical child. But at 3 and a half he become remote and perseverative, sitting in a corner and staring at his own splayed hand. Eventually he was diagnosed with high-functioning autism, a label that seemed to explain everything from his calendar memory and social isolation to his normal IQ.

We got him into a good program and there was a brief, halcyon phase of near normalcy … from ages 12 to 17… I occasionally even referred to him as "cured."

But in the months before turning 18, Andrew grew depressed and bitter. Huge and hairy -- a young man who grows a beard by twilight -- he suddenly became as withdrawn as he'd been at 4. Many of his old symptoms returned: the rocking and "stimming" (e.g., blinking rapidly at lights), the compulsion to empty bottles of liquid soap. Sometimes he would freeze, like a statue. Classic catatonia, the experts told us...

… When Andrew finally landed at the county hospital, after 10 hours in the circling ambulance and another three in the E.R., I was still looking for a different answer. This wasn't autism. Surely he had a brain tumor, a seizure disorder, or a delusional condition such as schizophrenia. Maybe, on one of his crime sprees, he'd gotten ahold of some PCP.

But the psychiatrist assigned to my son said no. The MRI was clean; the EEG normal. The doctor's specialty happened to be schizophrenia, and he saw none of the signs. Street drugs would have left Andrew's body by now. This was isolation, frustration, hormonal surges, poor impulse control and hopelessness. It was adult autism, the psychiatrist told me: one awful direction it can take…

So what's going on here? What does this mean for parents of children who carry the label “autism”?

Not to much by itself. Andrew’s tragedy is one of hundreds of thousands of stories. It defines boundaries, but how typical is this path?

Well, for that we’d like to have some medical research. Like being the operative word …

Let’s start with the phrase “adult autism”, the term Andrew’s psychiatrist is said to have used. There are thousands of medical articles on DNA findings in autism, but only 7 hits on “adult autism” of which only a Japanese study is mildly interesting.

Okay, so what about a search on “natural history”, the medical term for studies of the progression of a disorder?

Those results are little better. With a few minutes of work I found seven articles over about 40 years in Japan, the US, Sweden, and Turkey. That’s not the same as "seven research studies'”, this set includes at least four reviews! …

• Freeman et al, 1991 – 62 patients studied over 12 years. The abstract isn’t very useful.
• Shirataki et al, 1984 – “… poor outcomes might be due to the particular situation in Japan throughout this study period…”
• Kobayashi et al, 1992. Sort of a f/u to Shirataki, also Japanese. “Although 31.5% had shown marked deterioration during adolescence, 43.2% had shown marked improvement during that period. Possible factors contributing to these results are discussed.”
• Rutter 1970 – Infancy to Adulthood. No abstract, this is too long ago to have one.
• DeMyer et al 1973 – Another one too far back to have an abstract.
• Nordin et al, 1998 – See below
• Korkmaz 2000 – See below

Two of the reviews sounded like they might be worth digging into …

Korkmaz 2000 (Turkey, review) … a gradual overall symptomatic improvement including an increase in adaptive skills is observed in most cases with age. Follow-up studies show that the diagnostic features, the differential diagnosis, and clinical problems of adult autistics differ substantially from that of autistic children… Depression, epilepsy, and behavioral problems such as aggression and agitation may be major clinical problems during adolescence…

Nordin et al, 1998 (Sweden, review) … The majority of children with autism show deviance and socially or psychiatrically handicapping conditions throughout life. Only a small proportion of those with classical childhood autism lead independent adult lives. Others, particularly those with 'high-functioning' autism and so-called Asperger syndrome will improve enough to live an independent adult life. The level of mental retardation and other comorbid conditions (such as medical syndromes and other neuropsychiatric disorders, including epilepsy) is important in predicting outcome…There is a continued need for prospective, longitudinal studies of children with autism spectrum disorders, particularly in Asperger syndrome. The role of interventions of various kinds needs to be addressed in such studies.

So over 40 years of “research” on autism, and millions of dollars in NIH money, we have a handful of studies of small numbers of people and a few review articles.

This is pathetic, especially when we think of all the money we’ve wasted on vaccine distractions. In a just world the last five directors of the National Institutes of Mental Health would be grilled by a rabid Congressional subcommittee. What the heck have they been spending their money on?

To underscore just how bad the research record is, the lay literature is competitive. Send in the Idiots traces five people’s story from childhood to adulthood; in this context it qualifies as qualitative research.

So what can we say from Andrew’s story, other than that there’s a hell of a lot of suffering in this world?

Not much. In 2009 we know about as much about developmental brain disorders as 19th century physicians knew about fluid balance. In those days doctors couldn’t meaningfully distinguish right sided heart failure from renal failure from venous insufficiency from lymphedema. We didn’t make much progress until new instruments (the stethoscope for one) and new thinkers (William Osler) tore up the old classifications and started over with careful observation.

Today, 100 years after Osler, we seem to have forgotten how to observe the natural history of disorders we don’t understand.

With autism and other disorders of brain development, we need to start over with new diagnostic definitions, new qualitative research, and new retrospective and prospective studies of the course of the disorder. We’ve screwed around long enough.

Oh, and fire the Director of the NIMH ok?

Update 3/27/09: After sleeping on this, and thinking how incredibly hard it is to do natural history studies on this particular topic, I decided to give the current and former NIMH directors a break. So maybe time outs rather than termination. Our knowledge is so incredibly limited, however, that it would be well worthwhile to qualitatively profile four or five hundred adults with a history of childhood autism or Asperger's. Forget representative selection, just find whoever we can get and do the interviews. That's a study we could do and fund this year, and I'm confident it would tell us a lot. It would also make it impossible to ingore the depth of our ignorance.

I have two additional comments on the specific story of Andrew. One is that, if he can be restrained from harming himself or others, the future need not be hopeless. We all know of schizophrenics who, with medication and time, improved considerably.

Secondly, if the description we've been given is reasonably accurate, I believe a thoughtful psychiatrist would delcline to place Andrew in any pre-established diagnostic category -- neither schizophrenia nor autism nor anything else. So there is no ability to predict outcomes, and all treatment will be empirical.