A little different story

Gina - posted on 08/17/2011

Likewise, I have a son who is now 16. He is extremely high intelligence with all of the testing that he has gone through. He has been in special education for most of his schooling years, I home schooled him for about a year in-between and had him in mainstream classrooms for a couple of years. He has had a very rough time. He was officially diagnosed as having Asperger's syndrome when he was 13 years old. Every time I spoke to the psychiatrist that was prescribing him medications for ADHD that I knew were making him worse it would go in one ear and out the other. I kept asking about the "unofficial" diagnosis from the school about him having nonverbal learning disorder or being on the autism spectrum and he would say he didn't see my son as having any PDD-pervasive developmental disorder-often a general term for many conditions related to autism. It is true that I tried to expose my son to as much "normal" things in the world and experiences to diversify him and his knowledge base, of course age appropriate and that would be helpful to him. So much that my son does not appear like the "typical child with autism", but that does not change the facts any more or make him any less. The biggest issue with my son is the aggression and what his clinician who worked with him in the past has called "reactivity". Right now my son is not at home, he is in foster care, I have a three year old at home with me and apparently there is fear that my older son could/might hurt him. The place where they have my son in foster care is in a dangerous area. I have a safe, nurturing place for my son to live. Currently, I am fighting to get him into a more appropriate placement in a school in the area where he could be safer and more adequately served. As he moves into young adulthood he needs a better environment than what he is currently being provided.

Kristin - posted on 08/16/2011

Hi Teresa,your story is similar to ours. I started noticing there was something different about my son when he was 2 or 3 years old....he was far too aggressive and didn't seem to understand social norms as well as he should. My second child was 15 months younger than him, and she was picking up social cues much faster than he was. When he started school, the differences between L and his peers was really highlighted. In class work he was far ahead of them (how many average 6 year olds do you know who like books on how blood circulates the body as bed time stories?) but socially he just didn't get it. The school had a mother's group for children with ADD/ADHD, which I joined for a while, but whilst he did display some signs of ADD, there were other things which didn't seem to fit. I knew there was something different about him, but I didn't know what. I took him to a pediatrician, who told me there was nothing wrong with him and treated me like a paranoid parent!
For the next six years, people kept asking me what was wrong with my son. I always said "the doctors say there is nothing wrong with him." Far too often they just gave a disbelieving look and walked away. Even family who had refused to believe that there could be anything wrong with any of our kids (our family apparently only had perfect children) started agreeing with me that L was different.
At one point, the school strongly "suggested" that I go to parenting classes so that I could "learn to manage my children better" . Although I felt insulted by their inference, I wanted what was best for my kids, so I went. They advocated time-out. I tried it. I went back and told them it didn't work, they said I must have done it wrong!! I told them exactly what I had done, so they could tell me where I went wrong...they could not find any way for me to improve, they just insisted that time out works for every child and I must have done something wrong. I never went back. Personally I could not understand how my parenting skills could be at fault anyway....I had 3 kids, N was 15 months younger than L, and she was developing like an average child....they had both received exactly the same parenting skills and techniques, because in child raising, 15 months is not long enough for major mistakes to show up....if I was making such big mistakes with L, then I would be making them with N too. S was less than 4 years younger than L, 2.5 years younger than N, and seemed to be developing at normal rates too. So I couldn't see how my parenting skills where at fault if 2 out 3 of my kids were fine from the same skills!

Eventually my husband and I separated, and he got a new girlfriend. She had an autistic brother, and after meeting L, her father asked if L had ever been tested for Asperger's syndrome. I had never heard of Asperger's, so I got on the internet and looked it up. I read the first site and was ready to look for hidden cameras in my home! The girl being described could have been my son! Finally I had a name for a possible diagnosis. By this time, L was 12, depressed and suicidal. He was under the care of a local psychologist, who refused to listen to me. She said he socialised too well to have Asperger's. This was the same woman who told us to stop taking L to an anger management class for young boys because he was upsetting the other kids too much! Fortunately the school guidance officer listened to me, observed L for a few days, then gave us a referral to another pediatrician. And finally we got a diagnosis! Asperger's Syndrome, with possible ADD.

L is now 21. He is on a disability pension, and doesn't work. He has low self-esteem because he was bullied in school, and his future looks bleak. I often wonder what his life would have been like if he had been diagnosed early. Perhaps with early intervention, he would have been able to reach his full potential.

I'm sorry this story has become so long, but I think it is important for us to know that parents are not always paranoid when they say there is something wrong with their child. Please everyone, if you feel there is something wrong with your child, keep pushing....get a second opinion...or a third, fourth, whatever it takes! Or if you see another parent in that situation, encourage them to keep trying, keep pushing, and never give up! Our special kids are worth fighting for!

Jodi - posted on 08/16/2011

It's important you shared this story because you are right. It's a long road and getting misdiagnosed is something I think many of us face. I am truly glad your daughter is now getting the help she needs, but it's sad as parents nobody hears us. We know in our hearts what is right and what isn't, but many specialists and doctors refuse to answer. Our family has gone through the grindstone fighting for our son who is five and I will keep fighting. That's the key. Don't give up because we are the only advocates our children have to fight for them on their behalf. Your story is a true inspiration and I'm glad you shared it!