Janice L. Berliner
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Developmental Disabilities

I just learned that today is Developmental Disability Professionals Day. That gives me an excuse to express gratitude to those who recognize that all people bring value and diversity to the fabric of our world, and mention that these professionals provide services to some of the most vulnerable. Developmental disability is a catchall term for many conditions, and is a common diagnosis. You might be surprised to learn (I was) that one in six children, or 15%, is diagnosed with a disability or delay. They occur among all socioeconomic groups and races, and include four main categories: nervous system disabilities, sensory related conditions, metabolic disorders, and degenerative diseases. As you might expect, there are numerous subsets of disabilities in each category. Many of these, though certainly not all, have genetic components, making them especially interesting to me as a genetic counselor. In fact, the subject of my first novel, Brooke's Promise, has a disability called Pompe disease.

So what are we really talking about here?

Developmental disabilities are a group of conditions caused by impairment in physical, learning, language, and/or behavior areas. They begin during the developmental period (in utero until the end of adolescence), impact day-to-day functioning, and are typically life-long. Some examples that you might be familiar with include ADHD, autism spectrum disorders, cerebral palsy, Down syndrome, intellectual disabilities and vision impairment. Those that are hereditary include such conditions as William syndrome, Fragile X syndrome, Prader-Willi syndrome, and many, many others. Some are environmental, including the uterine environment during fetal development, such as fetal alcohol (or other drug) syndrome, maternal diabetes, maternal seizure disorders, and again, many others. While most of these developmental disabilities do not have cures, often the symptoms can be improved and managed with medical treatments or surgeries, as well as behavioral, occupational, physical, and speech-language therapy.
Intellectual disability (ID) is the most common developmental disability, and typically involves significant difficulties in both intellectual functioning, such as communication, learning, and problem solving, as well as social skills, routines, and hygiene. Intellectual disabilities occur on a spectrum, such that they can be mild, severe, or anywhere in between. Most people with ID have more mild disabilities, can live fairly self-sufficient lives, and may not even be apparent to others.

Why is this important?

Well, as developmental disabilities are common, it will be the rare person who does not meet and interact with someone who has one. You yourself, your partner, one of your parents, children, siblings or friends might have one and not even know it. Not long ago someone very close to me diagnosed herself with ADHD. We were skeptical at first, but with all the internet self-tests, she was pretty sure. A physician later confirmed it, and now she has both medication and counseling to help her manage her symptoms very well. Many of these conditions are far more serious than this, and may require life-long therapy, dietary restrictions, assistive technologies, or medications.

How to identify if a child has a developmental disability

Developmental milestones are skills such as sitting up, crawling, walking, smiling, and speaking. Every child reaches milestones differently, and some do not reach them at all. These milestones give a general idea of what to expect from a child, and if that child is falling behind or not meeting the milestones at all, it could be an indication that there is a delay. Of course the pediatrician will ask questions about these milestones too, but it is best not to wait, as if the child needs treatment, the sooner it begins, the better the outcome will likely be. 

One of the best techniques to come along in recent memory to assist with this is newborn screening, which is the practice of testing all babies in their first days of life for certain disorders and conditions, mostly genetic, that without intervention may permanently impact them and their families. This testing is required in every state, because again, the earlier these disorders are recognized and treated, the better the outcome for the newborn. 

If you find yourself in the presence of someone with a developmental disability…

…do yourself and everyone involved a favor, and employ these tips from the Special Olympics: 

  • Use clear, simplified language and try speaking slower, not louder
  • Treat them as you would your peers. Do not speak down to them 
  • Draw boundaries. Do not allow them to get away with bad behavior, as you wouldn't for someone without developmental disabilities 
  • Ask them their thoughts and allow them to answer. Don't expect that you know what they're thinking 
  • Ask if you can help them before assuming they need help. You may be surprised 
  • Expect to get a lot of questions, but don't be afraid to say so if you're not comfortable answering some of them 

Resources

If you think you, or someone you love, might have a developmental disorder, there are lots of resources that can help. Here are just a few: 

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Janice Berliner

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