As I said in an earlier post, I was talking with my psychologist on Wednesday, and she mentioned not being sure I’m autistic after all. She said I might suffer from the effects of brain injury. Now my parents say it hasn’t even been proven that I had a brain bleed, but it is proven that I had hydrocephalus, which alone can cause brain damage.
I explained to my psychologist that we’d discussed this problem diagnosing some people on a list for parents of older preemis on which I’m one of a few preemie adults. On this list, we coined the term “preemie syndrome” and there were even speculations about what might cause it. For example, former preemies are known to have on average a much smaller orbitofrontal cortex (OFC) than full-term children. The OFC is a part of the forebrain speculated to pay a role in among other things obsessive-compulsive disorder. Now I have never had an MRI done so have no clue of the size of my OFC, and besides the whole point of “preemie syndrome” was that it needed to be as inclusive as possible to the disabilities experienced by former preemies.
So what is “preemie syndrome”? It is a constellation of often ill-explained difficulties and deficits in a former preemie. These include:
- Motor deficits, often not diagnosed as cerebral palsy. Developmental coordination disorder, “clumsy child syndrome”, fine and gross motor delays. Hypotonia or hypertonia.
- Cognitive impairments: learning disabilities or low IQ. Difficulty thinking logically or dealing with abstractions, literal-mindedness, inability to comprehend or follow simple directions, sometimes good rote memory, short-term memory loss. Test scores may be higher than actual functioning. Inconsistent performance.
- Speech problems./LI>
- Feeding problems: reflux and/or failure to thrive.
- Dental problems: missing teeth, need for braces, high palate.
- Low vision due to either retinopathy of prematurity (ROP) or cortical visual impairment.
- Autism, Asperger’s Syndrome, Pervasive Developmental Disorder, “autistic traits”.
- Social dysfunction: few or no friends, may not recognize social cues, oblivious to social space, low self-esteem.
- Behavioral problems: immaturity, self-regulation problems, poor impulse control, intense need for order and routine, stereotypic (self-stimulatory) or self-injurious behaviours, disorganized behavior, inability to prioritize.
- Attention deficit (hyperactivity) disorder (ADD/ADHD) or similar traits.
- Sensory issues: sensory integration dysfunciton, sensitivity to noise, increased startle reaction, “tactile defensiveness”, strong aversion to certain tastes or textures.
- Depression or bipolar disorder.
- Anxiety disorders or obsessive-compulsive disorder (OCD). Peculiar phobias.
- Reactive attachment disorder (RAD) or attachment issues.
- Precocious puberty.
I didn’t randomly make this list up myself even though I have/had all traits except for speech problems and precocious puberty. I think Helen Harrison was the first to make a list, though I had this one on my website when it was still online.
Of course, if “preemie syndrome” were to become a recognized condition, it would still be very vague. It would require children to get an extensive evaluation to determine their actual weaknesses and strengths. The same, however, goes for diagnoses like brain injury that aren’t particularly helpful except in justifying the need for support.
I still feel that children and adults who struggle in life need to know their strengths and weaknesses and what might help them reach their potential. They may learn this from people who had similar experiences, be it premature birth or brain injury or whatever. They may also learn from people with similar strengths or weaknesses, such as in my case people with social communicative difficulties or “autistic traits”. With a diffuse concept like “preemie syndrome”, people need both. I do feel that preemies could also benefit from the sense of community in connecting with other former preemies. Unfortunately, as I’ve said before, not much support is out there for adult preemies.