This is one of the best descriptions I have found that explains what Joey was diagnosed with. I sent it to family members when I told them of his diagnosis.
Here's the link:
What it Is Pervasive Developmental Disorder - Not Otherwise Specified, or PDD-NOS, for short, is a condition on the spectrum that has those with it exhibiting some, but not all, of the symptoms associated with classic autism. That can include difficulty socializing with others, repetitive behaviors, and heightened sensitivities to certain stimuli.
How it's similar to classic autism
Those with PDD-NOS behave like those with classic autism in many ways. First, they are all different (meaning one person with PDD-NOS doesn't act exactly like another; the same holds true for classic autism). When interacting with others, they may appear unemotional or unable to speak, they could have trouble holding eye contact, or they may have trouble transitioning quickly from one activity to the next.
How diagnosis differs
Those with PDD-NOS are different from others on the spectrum in one specific way: While they may exhibit some symptoms of those conditions, they don't fit the bill closely enough to fully satisfy all criteria set by the experts. Perhaps they started having difficulties at a much later age than others on the spectrum. (According to the National Dissemination Center for Children with Disabilities, they are often diagnosed between the ages of 3 and 4 years old.) Or they may have the same challenges — for example, they may be oversensitive to their surroundings — but not to the extreme that others on the spectrum do. Consequently, those with PDD-NOS are sometimes thought to have a "milder" form of autism, though this may not be technically true. One symptom may be minor, while another may be worse.
What To Do About It
According to the Yale Developmental Disabilities Clinic, treating children with PDD-NOS could prove tricky: Sometimes, they may not get the help they need as quickly as those whose behavioral patterns are more clearly definable as autistic. Healthcare providers may not provide a diagnosis of PDD-NOS until after they've considered all the other "types" of autism; in short, they may arrive at their conclusion after essentially a process of elimination.As with other conditions, it takes a village of doctors, psychologists, teachers, therapists, and family members to arrive at an action plan that would work best for someone with PDD-NOS. A "one-size-fits-all" approach usually doesn't work: A multi-pronged regimen may be the most advisable. These treatments could include:
Various behavioral regimens, including play therapy, Applied Behavior Analysis (ABA), sensory integration therapy, and more
Medications, including anti-depressants
Social skills training, which teaches children how to interact with their peers for specific situations
Alternative therapies such as martial arts therapy, wherein they flex their muscles literally and figuratively (they get stronger and learn how to function in a group setting); music therapy, which has kids learning how to communicate with the help of songs; or facilitated communication, in which children are taught to use computers or other equipment to make their thoughts known, especially if they have trouble expressing themselves verbally. (It supposedly is helpful to some children with PDD-NOS, says the National Dissemination Center for Children with Disabilities.)
Like other parents with children on the spectrum, you will face many challenges, starting with the incomprehension and insensitivity of others unfamiliar with your situation. They may think your child is "misbehaving" and, consequently, deem you a parent unable to "control" him. This may be especially true because PDD-NOS kids don't fit into the more easily identifiable forms of autism spectrum disorders. Ignorance can bring out the worst in others, and sometimes, when they're not privy to your child's issues (or simply don't understand them or won't accept the diagnosis, as happens in some families), they may be more judgmental.
That's why it's important to surround yourselves with friends, family members, teachers and healthcare providers whom you trust. Be sure that the lines of communication with and among them are clear; you will be relying on them through the many ups and downs of life with a PDD-NOS child. If you're the primary caretaker (meaning you spend the most hours with your child), you'll need to make time for yourself, too. Caring for others can be draining, and you won't be able to give much if you don't replenish your own stores of energy and look after your physical, emotional and spiritual needs. Ask your child's healthcare providers for referrals to support groups so you can meet parents of other children on the spectrum; or go online — many parenting Web sites have bulletin boards for children with special needs, and Autism Speaks has online forums as well.
Structure is helpful for children on the spectrum, so take this into consideration when deciding what events to attend or places to go. Preparation is key, so let your child know what to expect before the situation takes place or they reach their destinations. Consistency also helps, so check in with your healthcare team before starting or stopping a regimen. As children grow older and become more aware of the limitations that their condition has placed upon them, it may be helpful for them to receive counseling with a therapist trained in dealing with pervasive developmental disorders. As difficult as it is for parents to go through this journey, it's even harder for the children themselves who have to work through their own personal challenges and other people's ignorance as they make their way in the world.
How to Grow With It
Teens & Adults Adolescence is hard enough for children who aren't on the spectrum, so you can imagine the challenges that teens (and even adults) with PDD-NOS face. They're equally hampered by hormonal fluctuations, but also have to take on the complicated (and sometimes cruel) social habits of their peers even though they don't have the full complement of skills to do so. Dating will be thorny — though some may ignore this rite of passage altogether — and friendships, so simple for young children, may prove to be more daunting. This is why your child may need more support at this stage than ever before, especially as they grow more aware of their own condition. A counselor trained with dealing with teens on the spectrum can help immensely, as will knowing that you're by their side every step of the way as they learn how to navigate a bigger and more complex world.
It's difficult to predict how easy — or hard — life will be in the long run for a person with PDD-NOS, as much depends on the severity of his or her symptoms and how he or she reacts to therapies. But if, like many others, the condition is on the "milder" side of the spectrum, your child will likely be able to care for himself or herself while growing older. Marriage and parenting may prove overwhelming for some, though not necessarily for all of those with PDD-NOS. The good news: It's possible to enjoy a full, if complicated, life.
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