I’ve mentioned autism before here and here. It is a diagnosis that has been around for a several decades now. It is increasing in incidence or at least in being diagnosed. The latest I heard was 1 in 166 births – no small number.
In terms of defining the disorder, the latest edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM-IV-TR or DSM, for short) cites difficulties of functioning in terms of language development, social development, as well as odd mannerisms. Some view it as being on a spectrum with Asperger’s disorder on the higher functioning end which tends to forego the language difficulties.
On a broader spectrum, the diagnosis shares the scene with other disorders under the umbrella of pervasive developmental disorders. These include Rett’s disorder, Childhood Disintegrative Disorder, and Pervasive Developmental Disorder, Not Otherwise Specified.
(In this article, I am referring to all of these disorders as well as others that defy simple diagnosis but carry similar problems. I use autism as a focus, as it is the best known.)
Ultimately, there are numerous pathways to the development of autism – many of which are likely unknown and possibly unknowable – which lead to the state of an adolescent presenting with the characteristics listed in the DSM.
The criteria listed in the DSM by no means completely describes any single person with autism, but it is a good starting point.
One essential point is that these kids have minimal capacities to converse. This capacity is limited for any number of reasons ranging from low intelligence to poor processing of stimuli possibly leading to poor intellectual development. As a result they have little ability in letting their needs be known. Beyond this, they likely have difficulty understanding these needs themselves. They are left only to feel urges without adequately learning how, when, or why to work with them.
Conversation attempts often consist of grunts, moans, and a few words. Anyone, autistic or otherwise, can become irritated, frustrated and angry when communication fails. Unfortunately, for those with poor processing systems, this irritation can lead to combative and aggressive methods rather than any further consideration.
As they have such a hard time comprehending the outside world, and by inference, possibly their inside world as well – it stands to reason that their methods of communication are meager, at best.
Like all kids, their needs and desires change as they become adolescents. They have developing sex drives and may even crave independence in some way.
Adolescents with adequate or even good capacities for communication can have a miserable time in dealing with their sexual development and attempts at independence. Someone with autism usually develops a very close knit and conflictual relationship with a parent where their needs of dependence are pitted directly against these urges that grow despite the frustrating impracticality of exercising them.
Both parent and teen want independence, and they both have learned dependence. Extrication is a near impossibility. A mother might feel a failure if leaving the child to fend for her own and likely feels guilty for even allowing such a thought to enter her mind. The child may want independence, too. But he or she is utterly dependent upon the caretaker for the most basic of needs.
The drives for sex and independence are poorly understood by the child and hardly imaginable by the caretaker. The relationship between the parent and adolescent carries all of these messages in their interactions and conversations. The result may be “an explosive child.”
As an example, an adolescent with symptoms of autism, becomes increasingly aggressive and dangerous at home. He is growing into his teens and is getting larger with puberty well underway. Whatever the reasons for the aggression, it becomes more and more difficult for the caretakers at home – who need to work and deal with the very real limitations and struggles of everyday life.
Even with the teen watched 24-7, which is a near impossible task without hired help, the teen can overpower the only family that might be available. Grandparents, for example, may no longer be an economical option.
The teen has a particularly damaging outburst which leads to a 911 call and/or a trip to the local hospital. He may have shattered a table or injured a family member, for example. Usually, a family does not want to take the teen to the hospital unless absolutely necessary, in hopes that “this is a phase” or “this may pass.” For all I know, sometimes things like this do pass, but I have a biased viewpoint being at the hospital only seeing those that come in.
But for at least some, the periodic and unpredictable behaviors get worse in terms of frequency and damage. If the problem is related to sexual development, a matter of independence, or a conflict between child and caretaker – these are things that are very difficult to address if addressable, at all. As a result, the adolescent and the caretaker enter a seemingly spiraling course.
Medications can help though there is minimal research to back up those that are available. Most often, it is a hit or miss with no promise that a hit exists. Trials can include a near infinte number of medication combinations and dosages leading to a sometimes never-ending search for a winning regimen fueled by hope, anger, and frustration. These are medications with seemingly minimal promise carrying massive side effect profiles.
These kids present with a condition that is poorly understood and may be worsening with damaging implications for themselves and their families in terms of their physicial, social and occupational lives. They start on a medication that might help. They are observed for a few days. When things seemed to have calmed down, the patient is sent back home. The adolescent may or may not explode again several days or weeks later, and the process is repeated.
There are very few live-away-from-home therapeutic settings in existence. They are not often well-funded. Parents, having had to spend enormous resources emotionally and financially thus far, have little else to spend to get their kids to such places. Not only that, they have to fight with themselves and their own guilt in feeling like somehow they failed despite massive evidence that they did not and had no control over the situation. They still often feel something hidden or something others don’t know has somehow contributed to their and their child’s fates.
Getting financial assistance is a painstakingly long process. There aren’t many funding sources for kids with autism. The application process, if available, generally takes several months to get through.
So, in the best possible scenario, a window is created. This window consists of several hospitalizations and returns to the house where the family is strained. The family feels like they have no one to turn to except other similar families who can only sympathize. During this time, they need to jump through several hoops to get any funding at all while applying to the few places that might have a bed available. All this is done while juggling their daily lives.
Meanwhile, the child continues to sit and wait at the hospital knowing not what for. He plays cards with the staff. He watches his favorite movie. He gets upset when he can’t have his favorite cereal right now.
Only so much can be done on an individual level. More needs to be done on a societal level. What exactly, I can’t say. Certainly more funding and more therapeutic environments that provide respite for weary caretakers would be helpful. Researchers continue to look for etiologies. Groups continue to push for causes.
I write this article to raise awareness. It’s really just the tip of the iceberg. I’m not sure how much this helps the cause, but there it is.