ASPERGERS

by Mari Nosal, M.Ed., CECE

As a seasoned parent of a son with Asperger’s, and please note I have a son with Asperger’s, not an Aspie son. I define him as a young man not Asperger’s. You will also note that I do not refer to Asperger’s as a disorder. I refer to it as a syndrome. A disorder alludes to something or someone who is broken and needs to be fixed. i.e. a computer virus that can be repaired. A syndrome is a challenge that one must adapt to and live with. Compensatory strategies may be taught to ensure a level of success. But Asperger’s can’t be fixed.

I have most definitely experienced a multitude of emotions in terms of parenting my son to young adulthood, and still do.. If I named every emotion I have felt, they would most likely have a length span which would originate on earth and reach as high as the furthest star in space.

To name several, I have experienced apprehension which was resultant in my fear for my son’s future. I felt pain from the inevitable ostracism he endured at the hands of peers, and adults. I have experienced sadness which originated from my sons struggles and not conforming to my perception of who he was intended to be, the person I visualized he would become, and the things I felt he should think and feel.

I have felt the uncertainty resulting from naysayer’s comments and predictions of who my son would become as a person both developmentally and behavioral. Naysayers predicted how my son would develop and what his future achievements or lack thereof. One would think professionals and society at large had psychic abilities and peered into a crystal ball to make predictions.

To parents with newly diagnosed children, I am here to emphatically implore you never to give up hope. If you give up hope, your children will certainly give up as well. You will get frustrated, feel the uncontrollable urge to bang your head on a wall, cry, and yes at times even wonder why you were blessed with a child with Asperger’s. You may even, (horrors) wish that your child would go away.

You may find yourself feeling intense pangs of jealousy when you see your child’s schoolmates walk by in a clique laughing away as they enjoy their day of play together. You may even experience intense anger and jealousy towards other parents while you silently wonder why their child was not born with challenges.

These feelings are all normal. Parents are human beings. Wishing your child would go away while you are under duress does not mean you really want him to disappear. On the contrary – it means you have invested so much love and expended so much effort into doing what is best for your child, that you merely crossed the line from loving them to the point exhaustion.

If you are the parent of a younger child, please do not surround yourselves with, nor listen to the naysayers who predict a life of doom, gloom, and anguish for your child. After all, you know your child better than anyone. You live with them 24-7. Trust your instincts. A parent knows what is best for their child. You are your child’s best advocate. Your child will take two steps backward for everyone they take forward. Adjust your expectations. Do not be hard on yourself and note merely the steps backwards. I f you adjust your expectations and look hard enough for the small steps forward you will be surprised at the growth that was not seen.

Children with Asperger’s do develop and succeed within the right environment. The anxiety stems from basing our expectations on what the Jones’s kids down the street are doing, what our friends and neighbors think of our children and us as parents. If we let go of those expectations and gauge successes on our child’s developmental and cognitive level and not other children their age, we will be pleasantly surprised.

Note your child’s achievement’s in baby steps. Do not worry about what your child will achieve ten years down the line. i.e. will they have a girlfriend, kids, get married, have friends, or simply get a decent job that will enable them to live independently. Remember that the average child with Asperger’s has a developmental age that lags 4 years behind their chronological age.

As the parent of a young adult son with Asperger’s I am hear to tell you that they have many attributes to appreciate. On a humorous note I will start with my son’s knowledge of electronics and computers. This sense of awe I now have for his computer talents were a sense of frustration when he was young. I cannot count how many computers he corrupted and how many mother boards he damaged while dismantling our computers, rebuilding them, and programming them with incompatible hardware.

As a little boy with Asperger’s, my son imitated people with foreign accents in public places. His lack of discretion would cause me to become flush from embarrassment. His knack for impersonations has come in handy when telemarketers call. My son convinces them that he is from a foreign country and doesn’t understand English. The telemarketers inadvertently hang up. I will emphasize that he has learned the fine art of discretion and outgrow public renditions of impersonations.

That young man has grown up to be a computer whiz and can now install modems, set up our new computers, and install programs safely. His talents have saved us a princely some of money for cable personnel, phone personnel, and computer repairman that did not warrant calling due to his self-taught expertise. My fondest memory was when the cable company wanted to come out and set up our new digital cable box. My son offered to do it for free. My digital system was set up in all of 12 minutes. My son was the ripe old age of twelve at the time!!!!!!!!!!!!!!!!!! Thus, what was deemed a negative and aggravating personality trait as a child has proved to be an attribute as a young adult.

As a young child my son was prone to emotional meltdowns from sensory overload. As a teenager he would provide a verbal debate for any topic or request directed towards him. If I sent him to his room for being argumentative, his debate often continued in a solitary dialogue as a soliloquy. His strong personality allowed him to walk away from children who were doing drugs, etc. Yes, a sense of nonconformity can have its merits. His debate skills turned into a talent for writing.

A humorous example from his childhood would be when we attempted to use the magic 1, 2, 3, program to teach appropriate behavior skills. Our son would act inappropriately and we would put up 1, 2, 3, fingers. When he continued to voice his opinion we sent him to his bedroom. After several weeks of implementing the behavioral program we realized that he would act up ,hence get sent to his room right before we were due to leave for church. We realized he goaded us into implementing the 1, 2, 3, program so he would not have to go to church. We quickly modified that and informed him that he would be expected to go to his room AFTER church. My son walked away and yelled, “That magic one, two, three doctor is a quack” :-0)

I am proud to say that by injecting a little humor, perseverance, venting occasionally to anyone that would listen, and most importantly adjusting our expectations to my sons needs he recently received his bachelor’s degree in psychology from college with a struggle, but much perseverance on his and our part. He successfully lived in the dorm. Again he struggled, but we were 45 minutes away if he needed us but wanted to give him a taste of independence. Independence that did not include the normal socialization of college life by neurotypical standards. But being with peers and fending for himself nonetheless. As I mentioned earlier, process and accept it in baby steps.

My son has a driver’s license. He passed after three failed attempts, but along with us he persevered and never gave up. Make no mistake our family still struggles, worries, and gets frustrated just like other parents. But as time has passed we have learned not only the art of teaching our son to accommodate us but to realize we need to accommodate him as well. I equate our quest with accepting my son. If we expect him to learn societal mores of the neurotypicals than we must attempt to make adjustments for him as well.

When in a foreign country Americans tend to expect foreigners to speak English so we can comprehend them. Shouldn’t we make the same accommodations for individuals with Asperger’s as well? They speak a different language than neurotypicals  hence they can learn the world of neurotypicals but we can learn about the Aspergian lifestyle as well.

Parents, I leave you with this. If you have not pulled so much hair out of your head that you are now bald  from frustration at this point I salute you. Yes, it does get better:-0)

Rock on, give your selves a pat on the back for a job well done as parents, and know there is light at the end of the tunnel.