Alphabet Soup

Yeah 2010!!!  I have to say that I am not a bit sorry to see the past decade become history.  I do not want to sound ungrateful, but the past ten plus years haven’t been so hot for us parents of children with ASD.  Moving forward into a new decade, I am extremely hopeful for those who are embarking on this newly paved road as well as for those of us who have already traveled many miles. With still much more to learn about ASD, advances continue to be made in order to help families deal with the countless challenges they will have to face.

With good reason to aspire to an optimistic future, the key to your child’s success and to your peace of mind can be summed up in one simple word…PLAN. 

The terms “high functioning” and “low functioning” are often used to describe the different types of autism.  The term high functioning autism (HFA) is used to describe Asperger’s syndrome and PDD-NOS because individuals with these forms have normal to above normal IQ scores. Due to the absence of mental retardation, it is often unfortunately believed that HFA requires little support and only some types of services…which makes planning for you child’s future much harder.

Another problem is that since the media has jumped on the Asperger’s bandwagon, they tend to depict individuals with very mild forms of the disorder.  Failure to communicate clearly, displaying repetitive rituals, having clumsy motor movements and inappropriate facial expressions is great material for a Hollywood producer, but misleads the audience about the seriousness of the diagnosis. Society’s misperception of what AS is really about…makes planning for your child’s future harder yet.

The truth is that an individual with a high IQ can have very debilitating symptoms that make simple everyday life extremely difficult, especially as they enter adulthood. I have found that those with higher levels of intelligence actually suffer more in many ways than those with a lower IQ.  It is important to keep in mind that knowing one person with ASD is just that…KNOWING ONE PERSON. 
Still, with great deficiencies in many basic life skills, parents do not appropriately plan for the future as one would if their child was intellectually disabled. So much is expected from someone with AS and this makes their co-occurring conditions, such as anxiety, depression, OCD, to mention just a few, often impossible to manage. Also, the parents of a child with HFA are somehow expected to figure it all out and on their own.  But as we enter a new decade, I am hoping that needs of an individual with HFA will not be determined by IQ, but by actual level of function and behavior.

I know from experience that you cannot imagine that your five year old with Asperger’s syndrome or PDD would ever need residential placement…yes, I am talking about the one thing that all parents fear the most…a group home. But the reality is that this is the one thing that will most help your child to reach his or her fullest potential and the only thing that can truly provide you with peace of mind.

I am not sure what letters of the alphabet adequately represents an individual’s inner torment or their family’s anguish watching them suffer. Nevertheless, no matter where your child places on the spectrum, you can alleviate a good deal of pain with appropriate residential planning.

Only ten years ago, planning for the future of a child with HFA was unchartered territory.  Now in 2010, there is a light at the end of the tunnel.
I have stated in past blogs that although your child may be intellectually capable, being able to navigate the adult world and sustain themselves independently is another story.

My future blogs will talk about my family’s experience with residential planning…the good, the bad…and even though it is probably the most gut wrenching decision you have yet to make…it is the MOST loving thing you will ever do for your child, your family and yourself.