Day 3 - The Good, the Bad and the Ugly

The Good - I love my son. He is wonderful and loving and will do great things in life. I believe in him. I will fight for his right to be in the regular classroom and if that becomes too stressful I will quit my job to homeschool. Even if it means loosing our house - again. His has a right to be respected and educated. Everyone in our home treats him the same as everyone else. He has chores, is expected to be polite and gets in trouble just like the other kids. To do otherwise would be an injustice to him. I am proud that our home is a normal and safe environment for him. My husband and I have worked hard to make that happen.

The Bad - The world outside our home is not filled with loving and caring people. Even at six, he has faced more ridicule from others than anyone can imagine. I see it - when he tries to talk to peers, he is ignored and laughed at and even called names. He doesn't understand that if another child is not interested in his latest obsession (such as food labels), it doesn't mean they are being mean or as Stephen puts it - "lying to him". When he walks circles around the playground and talks to himself he thinks he is "playing". The other kids think he is weird. My heart breaks.

The Ugly - His diagnosis and belief that others cared has caused a rift that is deep and wide. Truth sheds light on things you were too busy to notice before. Autistic and special needs kids are vulnerable to hate and misunderstandings. The ugliness is when it comes from teachers and family. I wish now that I had kept his diagnosis confidential. Too late now - I am an advocate for my son and I will have to endure some ugliness. That is my advice for the day. Be careful who you talk to - it might get ugly.

Day 2 - The High Functioning Dilemma

"Is he verbal?"

"Yes, very much so, but it is difficult to understand him and follow what he is saying."

"Does he make eye contact?'

"Yes."

"Does rock or make repetitive motions?"

"Not usually."

"Then what is the problem?"

"He doesn't 'connect' with the other children and he has major meltdowns over little things."

"How old is he?"

"5"

"So, what is the problem?"

If you can relate to this conversation, you are probably as frustrated as I am. For years now we have battled this misunderstanding about autism. Even though we just received his official diagnosis yesterday, we have known for about two years that his behaviors fell into the autistic spectrum. What was baffling, was that teachers seemed to know something was "off", but autism was not the first thing mentioned. Almost every day the notes came home from preschool about Stephen's meltdowns and inflexibility. Even when Stephen was placed in a special needs preschool for speech and language, testing him for autism was never a high priority. He spoke, played, laughed, and was beginning to read like any other "smart" pre-kindergarten student. But even so, he was not functioning well in his social environment.

The dilemma is this: because he was not two years behind academically and is verbal and was able to get through most of his school day, he was not considered "impaired enough" to offer services without hard evidence. We opted for private testing with a well known pediatric neuropsychiatrist. It was costly and lengthy, but I am hoping it will be well worth it.

For most of Stephen's day, he is a very typical six year old boy about to enter first grade. In small social settings there are few problems, except with some kids who pick up on his quirkiness and speech oddities and take advantage. As he gets older, this will probably become more an issue. In swim class and church, the teachers did not even know there was something amiss, but they have him for brief periods in highly predictable and structured environments.

After all my research, mostly internet and some highly recommended books, I noticed that high functioning autism is either lumped in with classic autism with a simple explanation that these kids are just higher functioning and can speak, or it is lumped in with Asperger's Syndrome. Additionally, there is no specific diagnosis for high functioning autism in the DSM IV. So join us as our family navigates the dilemma of high functioning autism. Feel free to leave comments and feed back.

Day 1 - Diagnosis Day

Well I knew this day was coming. It has been four years since we had an inclination that our now six year old son had some kind of communication issue. He was two and seemed to be full of words, but understanding him was next to impossible. He was easily frustrated, but he was two, and being our fifth child, we knew that the two and three year old stage can be filled with tantrums. But there was something "different" about Stephen. His tantrums did not match his personality and he seemed to babble to himself. There is a long history of speech difficulties and eccentricities in our family, so we felt he was "normal".

Preschool was a nightmare, and we ended up placing Stephen in a part-time special needs/speech and language preschool which meant I had to practically quit work. Stephen improved dramatically and we felt he was ready for the challenge of kindergarten. He excelled academically, but his days were filled with meltdowns and misunderstandings between him and his peers. Stephen and his teachers were miserable.

It is now the summer between kindergarten and first grade. We have moved, so he will be attending a new school. I just called the district to set up a transition IEP meeting and asked for the program specialist to be there. No one will be available until next week and I was informed that they have 30 days from the beginning of school to conduct the IEP. My hope is that Stephen will not have too many disruptions at the beginning of school. Transitions are hard enough as it is.

As I type this, I am torn between sadness and joy. Sad because I know the road he will travel will be rockier than most, but joyful because he will (hopefully) receive the special attention he needs in the classroom. Truthfully, he does not need much, just an understanding heart and a patient attitude.