By Elise Ronan
When I was asked to write this article about what our life is like in raising two young men with Aspergers Syndrome, I started to think about just what that meant. What did it mean to raise a child with a disability? The interesting thing I figured out is I actually have no point of reference for raising a child without a disability so the truth is I am not really sure I can answer that question effectively. But I think what I can do is tell you something about my children’s worlds. May be this will help the reader to understand what it means to be completely different than everyone else.
Yes, they are completely different, but you can’t tell by looking at them. There is no outward manifestation of any issues on an ongoing basis. It’s not like they need a wheelchair or walk with a cane or need to carry oxygen with them. Their disability is invisible and when you speak with them, there is no indication that there is anything out of the ordinary. In fact their language capabilities are far beyond that of the average person. So when they get overwhelmed by the sensory input of noise, or smells or even the feel of the clothes on their backs and have a meltdown or become cross for what it seems is no real reason, people just assume that they are for lack of a better word, brats.
You have no idea how many times parents of children with Autism Spectrum Disorders are told that their children are brats. That if they took a firmer hand or were better parents these children wouldn’t behave this way. We are told by total strangers yet, what is wrong with our children and how we should handle a situation that presents itself. I find it so amazing that there are those who would never interfere with anything in another person’s world, but they feel that they can tell you how to raise your child. I have been given more unsolicited advice from the most ignorant of people. Of course, I suppose if they weren’t ignorant then they wouldn’t be butting into someone else’s business. But I digress.
We have to make sure that we do not go where there are a lot of crowds. We originally lived in NYC and that was a nightmare for our oldest child, whom I shall refer to as Collegeman. We had no idea at that time that he had autism and had no idea that his auditory processing disorder preventing him from learning to talk. The noise level was so great coupled with his disability; it prevented him from filtering out the noise so he could actually hear the words being spoken to him. In fact, to this day, he will not happily go to the City for any reason. It is anything but a pleasure trip for him. He had always told us that he liked the trips to the country better than living in the city, but never knew that the peace and quiet allowed him to filter the world around him. You can actually see it in his body language when the sensory input becomes too much. There is rigidity and a definite change of voice tone to go along with his increased anxiety.
That is another issue, the anxiety associated with autism. Now as with everything to do with autism spectrum disorders, the anxiety part manifests itself differently in every individual. Collegeman has a much elevated level of anxiety than his younger brother, whom we shall call Highschoolboy. This can be seen by Collegeman picking at his hair and skin (a condition called trichotellimania) and biting his fingernails. He even has developed an anxiety related seizure disorder.
Highschoolboy, while not as outwardly obvious in the anxiety department, will start to elicit a verbal tic when his anxiety level becomes heightened. To this day, whenever he gets nervous about anything I can hear that little hiccup in the backseat of the car and I know his anxiety is ratcheting itself up.
Intelligence is also something that comes along with Aspergers. The boys are very bright. In fact their IQs happen to be relatively high; however, it does not mean that everything in academia comes easy to them.
Many people think that persons with Aspergers are mathematical geniuses. Collegeman hates math and math for Highschoolboy is like living through the Inquisition. Computer programming is also something supposedly associated with an autism disability but it is not something either one can do. They both are much better with the black and white of history, dates and even the application of history to modern day events. They can analyze and configure situations as long as it doesn’t involve abstract reasoning or unclear issues.
Language is also an issue for them. With an auditory processing issue along comes a language processing issue. We do not recognize just how much of our own language is intuitive. Intuition does not come easy to those with Aspergers. You need to be able to read the situation at times in order to figure out what the true meaning of some words are, and how it applies in any given situation. This also makes word retrieval and speaking extemporaneously hard for them as well. They could not get into a verbal slamdown with anyone. The responses would not come easy and in all truth they may not even understand the vernacular.
While Collegman can’t speak at the level that his IQ would have you assume he should, he writes with such abandon and beauty. On the other hand, Highschoolboy uses words that you didn’t even know existed in the English language. He can slice and dice verbal vernacular with the best of them as long as he is given time to gather his thoughts. But writing is a most painful project for him.
Ironically if it is something that they can see, they can develop an amazing acuity in dealing with and analyzing what is before them. Highschoolboy is enamored of film making and derives great pleasure form configuring and creating films. He sees things in movies that no one else sees and understands and can relay the message that the artist is trying to convey in their celluloid world.
With all their lack of social understanding and social interactive issues, the one thing they do recognize after all these years is when they are getting bullied. Yes, unfortunately children with Aspergers are the victims of bullies. Collegeman had it much worse than Highschoolboy. He was not only made fun of in middle school and physically assaulted, but when he got to high school there was the alienation on the part of the student body. No one would even sit at a table with him at lunch. If he sat down whoever was there would get up. It isn’t until years later in college and lots of therapy for post traumatic stress disorder that he actually sees that people can be nice to him and that there are those in the world who are happy to be his friend.
Luckily Highschoolboy did not have any of the problems with the other students that his brother did. While he is not a party kid, he has never actually been invited to anyone else’s party. The children have always been nice to him and would not broker any other student being mean to him. It was almost like they had a protective core around him. They understood who he was and understood that if he melted down it was not his fault and that everyone has issues that they are working on.
So we go through life with school accommodations, alternative location, extra time, use of a computer and even direction explanations. This is all important. Most people don’t understand that with these disabilities, auditory and language processing, anxiety and also the boys have ADD, it takes them longer to process and filter everything around them. So when they are given extra time, it is not making it easier for them in school than their neurotypical peers, it’s just equaling out the playing field.
We are lucky that we live in a district that was always willing to help the boys and did not really make us fight for what they needed to be successful in school. Many districts do make parents fight. It’s these parents that have to hire advocates or lawyers, file complaints with the government and sometimes when all else fails, home-school their child.
We moved here because this district is known to be welcoming and helpful to all children. We had moved from a district where the kindergarten teacher caused Collegeman to have a meltdown and then refused to let him in the room. They never told me but they had put him in a coatroom during the day. Since we had planned to move anyway I withdrew him from school and filed a complaint against the teacher and the school principal. It has been over 15 years and I am still waiting for that district to contact me about the problem.
By the way, abuse of children with autism spectrum disorders happens on a daily basis in our school system across the country. That is why there was legislation presented before Congress to end restraint and abuse of autistic children. At present it just sits there.
Social issues are a main ingredient of any autism spectrum disorder. Throughout their education both boys had the support of a paraprofessional to help them through their day and to teach them the secret language of personal interaction. We never really realized just how much we as human beings rely on the unwritten code of facial expressions and tonal quality to help us with our interpersonal interactions. When you don’t understand these signals, or your brain can’t process these signals, then you are terribly lost. You need to be taught on a constant basis the rules and regulation on a moment by moment basis.
The paraprofessional helps them to understand how they are feeling, how to identify when they are becoming overwhelmed and how to implement their self-help techniques. It is also not a one shot deal; these are things that need to be taught time and time again. Remember when your mother used to ask if she was a broken record. For persons on the autism spectrum, the support has to be just that, a broken record, repeating and repeating the ideas and support when necessary until the person eventually learns to handle situations on their own.
Here in the U.S., this support ends with high school or the age of 21. While there are many states with programs for adults with disabilities, most of them do not support those with Aspergers. There are up and coming programs and some states say they do support Aspergers, but you need to be careful and research the programs thoroughly. It has been the experience of those in the field that basically if you have a child with Aspergers, once they are out of public school, you are definitely on your own to find an appropriate program and support for them.
That brings me to the present day. As you can tell by his moniker, Collegeman is in college. He is very bright and academically does very well, but he needs support to navigate the classroom and the campus. The transition into this much unstructured environment took a toll on him and he needed extra support to be able to coordinate his life in additional to learning to handle the anxiety that ratchets itself up when there is a lack of structure. Luckily the college allowed us to hire people to help him in the classroom. But it is all on our financial backs. The state does not help, because they don’t support aides for invisible disabilities. The insurance companies don’t allow for the service. So we are either forced to pay or he would not be able to attend classes.
But he is learning, growing and developing the skills he needs in order to become more independent. It is a fine line between support and infantilization, and it is one we are working to figure out right now. Let us say we have not crossed our Rubicon when it comes to ending the support, but we are working on making the aides obsolete.
I have to say that with raising children on the autism spectrum, while every one of them manifests their disability in a different way there are certain issues across the board for most parents:
1. Getting the school and or county to provide the needed services, whether it is an aide in school, resource or educational support plus additionally speech, occupational therapy and physical therapy. Additionally there are social skills programs that the school can implement called “circle of friends”, in school psychological counseling or working with a social worker, plus support for after school clubs and any after school program. Plus don’t forget you have to discuss with the school if they will continue the therapy services over the summer break.
2. Recognizing that no matter how much you get in school, it is never enough. In fact in most cases it’s just a drop in the bucket of what your child needs. So you send them to a private therapist for speech, occupational and physical therapy on top of what they get in school. There are also social skills groups and psychological counseling. Don’t forget too that if your child needs medication for their co-morbid issues: anxieties, add, seizures, tics, and in some cases there are also major mental health issues such as bi-polar, there is also a neurologist and psychiatrist involved.
3. Then there is the additional education support, in the guise of tutors. This can manifest itself from private groups (ie. Sylvan, Huntington Learning Center) or on-line Tutor.com.
4. Also most children on the spectrum cannot participate in group sports or group activities without the proper support. That is why sports lessons are usually private and they cannot generally participate in town soccer, peewee football or baseball or join any kind of team sport. If the sport is individualized like tennis or track then they can be part of those teams. It is much easier as their performance is based on individuality but there is also a team element and camaraderie that our children need, just like everyone else’s children.
So what is life like for families living with children on the autism spectrum? This is a little glimpse into our world, but you know what, when it is all said and done, the boys will be who they want to be and they will venture out into the world, as prepared as we can make them. No one is guaranteed a life without challenges, and issues. It is how you handle what life throws your way that will determine how happy and productive a life your child will have.
For more information about Autism and Aspergers please begin with the following websites:
Autism Society http://autism-society.org/
Autism Society and HFA Syndrome http://ahany.org/
Autism Association of New England Support Group http://aane.org/
New Jersey Autism Support Organization http://www.aspennj.org/
For legal issues and a wonderful yellow-book guide to support services Wrightslaw http://wrightslaw.com/
Learning Disabilities and ADHD http://ldonline.org/
In the United States for federal law concerning your child’s rights http://ed.gov/
Each one of the organizations above has wonderful informational pages but also contain pages of helpful links to alternative organizations and information.
Elise Ronan is the happily married parent of two young men with Aspergers syndrome. She is a volunteer parent and child advocate in her town and community. She is the author of the popular blog Raising Asperger’s Kids. If you have any questions or need advice Elise can be reached on Twitter.