Dewane’s Story
For me, Kelly (or hobbittmom) living a life with autism came when my oldest son turned 18 months of age. Prior to that, he had been a normal child. He went through all the milestones at the appropriate age but by 18 months, he started losing words. Words that he had known very well, he seemed to not know at all and my husband and I were very concerned. We asked the pediatricians what was wrong but they insisted on telling us that all babies develop at different rates and for us not to be worried. When we tried to toilet train our son, that’s when we noticed that something was really wrong. We decided to take matters into our own hands and call the school. They sent a psychometrist out to test him and they found out he was developmentally delayed. Then the psychometrist told us of a Doctor who specialized in autism and that maybe she could help us. Once we heard the word autism, we were devastated, sure it was the end of what should have been a normal life for our child. We read scores of books on the subject, most of them were outdated due to the libraries lack of resources, and heard the term refrigerator mother over and over again. I became depressed, thinking I had somehow caused my son to be disabled and carried this burden for several months until we could get in to see the specialist. Finally, that day came and we were impressed with the doctor. She worked very well with him, one on one, and told us at the end of the session that there was no doubt in her mind, but that Dewane had autism. Then she offered to work with him so that he could get better.
In the meantime, we had been referred to the local chapter of the ASA and read the stuff in their library. It was less disheartening and we got to know the parents and learned more about autism and that it wasn’t the end of the world. I volunteered at the chapter, working on the newsletter and mailing out fliers and picked the brains of my fellow members to find out what would be the outcome for my son.
The schools however, were a different story. We were in one school system before the diagnosis and when they didn’t change Dewane’s IEP after the diagnosis, we moved. We had heard from the other parents at the chapter how one particular school system was better and had better resources. We enrolled Dewane and they had a teacher who was TEACCH trained who worked with Dewane.
We had our share of problems with that school system, though. The principal was a dictator and did things, like locking Dewane up, that led to Dewane getting worse. And by worse, I mean, he still had no language, was not toilet trained, was very ritualized, did not do well with transitions and had almost no social skills. Oh, and he even had trouble with eating. With the specialist’s help and that of the teacher, Dewane learned some sign language and we did too. He also had one on one speech therapy and that seemed to help. It took another 3 years (Dewane was 3 when he started school) before Dewane was able to talk and verbalize his needs. By age 7, he had toilet trained himself, though still wouldn’t BM during the day or at night. Unfortunately, Dewane went through a new teacher every year and most of them were not qualified in autism, and this seemed to set him back. I learned from a friend of mine who had 2 autistic children that an autism class was not necessary and Dewane could probably function well in a higher functioning class. It took some doing and a lot of fighting with the school system but by age 8 I had gotten Dewane into another school, in the same school system. It was an LD class and Dewane had an outstanding year. He picked up more language made friends and learned reading and math.
The next year wasn’t so great. He got the same principal who locked him up and one of the unqualified teachers he had had before. We moved him back to his old school when the teacher who was TEACCH trained came back. We thought this would work out fine but it didn’t. Dewane developed epilepsy and his teacher abused him and overmedicated him without our permission. Friends of mine from the chapter and myself were able to get her fired but it didn’t get any better. The next teacher and aide were also bad and again, I had to fight the school. Meanwhile, Dewane wasn’t making much progress and he was starting to decline. He was still seeing the specialist outside of school and I worked with him as much as possible. Finally, one year he got a great teacher and a wonderful aide and Dewane made progress again. His epilepsy got better and we had this teacher for 2 years. Some of the milestones he had passed were increased language (he had an excellent speech therapist) more reading and math, increased social skills, and increased self-help skills (thanks to me). Now here are some things I’m not proud of. My husband and I had had a lot difficulties with our marriage and eventually became divorced. But one interesting thing Dewane did was to make us make up by putting us in his closet then making us hug each other. He did this at age 2 ½ before he had acquired any language. During the divorce my ex-husband and I remained friends and eventually patched things up and Dewane was ecstatic.
My husband was in the military at the time and we were stationed at a NATO base in rural Germany. Dewane did very well with the transition and went to school across the border in the Netherlands. He had his own teacher who had lived in the town we had moved from and had learned about autism, and he had his own aide. He was mainstreamed for part of the day with the other kids. Dewane did not seem fazed that he was in a foreign country. He loved McDonald’s and still had that, though it was hard for me to order in German. One thing that we noticed is that Dewane never got lost. When I got lost driving about, Dewane would giggle and say, “You went the wrong way!”
We stayed in Germany for 2 years then moved back to the states. My husband had to stay in the military and was stationed in Virginia. I decided it would be best, since he was getting out in a year, to move to North Carolina where I thought Dewane would be better off. It was a huge mistake, not because my husband and I had to be separated, though we saw each other on the weekends, but because the school were too rigid and would not modify their curriculum to help Dewane’s special needs. I ended up home-schooling him, which helped, but I couldn’t give him everything he needed. That only lasted a year, then my husband got out of the military and we ended up moving to Massachusetts. Dewane dealt with the transition pretty well and went to a middle school that had the resources to meet his needs. He had a great teacher but it didn’t last long. She wasn’t able to be there the next year and though Dewane got a good teacher, he was classed with younger and lower functioning kids. I fought, trying to get him into a higher functioning class, but it did us no good. The school wanted Dewane at the high school and I wanted him in a higher functioning class and held back a year to help with his transition. We won on holding him back but we were never able to change to the other class. Dewane started high school, and how’s this for a shocker, in a school with over 3000 kids. He had a good teacher and he had different classes and it seemed to go well. His behavior was good and he showed signs of improvement. Dewane even got used to the crowded hallways and overcrowded cafeteria. He was able to go through the line, pick his meal and pay for it and find a seat with no problems. He remained in the same class for the rest of him time in high school, and had two other teachers, who were both great with him. He came off the epilepsy medication with no problems and his speech and language and self-help skills were great. Also, he had reading and math down and was learning science and social studies. He’s still in high school, but we’ve moved again, our last move to the house we always wanted. Dewane loves it here, he has his own room, and a private yard he can walk around in. He’s doing really good in school and has two jobs there, one at the school store and another one and he’s learning to spend his money and buy the things he needs. He likes photography, watching movies and tv, bugging his younger sister, eating and playing in the yard. He’s almost 21 now and I think he can still improve and do well. I’m a lot more hopeful of the future for him. He and my husband and I have sat down and talked about it and we’re looking into semi-independent living for him and supported employment. I think Dewane will be happy.

Patrick’s story
Patrick’s story is intertwined with Dewane’s. At about the age of 2, because my husband and I were worried, we had Patrick tested by Dewane’s doctor for autism. She saw signs but she wasn’t too sure of it. We had had him tested because we saw some autistic behaviors in Patrick but he had great self-help skills and verbal language. He continued to develop normally, toilet training, and other milestones but we noticed some social behaviors that were odd. He would blurt out things that were embarrassing to other people and talk to complete strangers as if he had always known them. We didn’t think much of it because by the time he started kindergarten, he was doing well. 1st grade went well too. But things really started to be noticed when we moved to Germany. He had a teacher who was German and who insisted that Patrick was too fat and told us he needed to be on a diet and he was too odd. My husband and I fought with her and eventually with the principal but they held out against us and refused to put Patrick in another classroom. It was harder to fight a NATO school, than one in the states and so I eventually backed down and home-schooled Patrick. This was both good and bad. He made a lot of progress in academics but was extremely deficient in social skills. When we moved back to the states, he had a great teacher who was understanding and worked well with him and was more polite about telling us of Patrick’s social skills problem. We decided to have him tested but the move to Massachusetts came before anything could be done about it at the school. We took the test results to his new school in Massachusetts and they scheduled an IEP meeting for him. The teacher was nice, though a little rough on Patrick, and the school psychologist was insulting, claiming I was an overprotective parent. Nevertheless, the school year progressed and Patrick did well in some academics, like reading and math, but was deficient in writing and getting along with his peers. He had a bully who was out to get him and the teacher and I worked together to help Patrick. Because of his weight (Patrick has an eating disorder), he found it hard to go up and down the stairs.
5th grade began and the school year went well. Patrick transitioned well to middle school and got away from his bully. Plus, he had the IEP in place. He got extra time for tests and help with his writing, but we didn’t get much help for his social skills. At home he was constantly fighting with his sister who is 2 ½ years older than him and we tried to stop it (we’re still trying today). He didn’t have many friends around the house and spent most of his time obsessing over video games, certain toys and Yugioh cards. In fact that’s all he ever wanted to talk about. Since then, we’ve taught him to be more polite when talking about his obsessions. He does with us but I’m not too sure he’s as polite about it at school. 6th grade came and that went well. We updated his IEP and he had a buddy system in place to help him at school. He did have a problem with a bully, but that was limited to school. At home he had a couple of friends but still spent too much time playing video games. We worked on getting him out of the house, but to no avail. 7th grade came and it was worse. They took him off the IEP, even though we protested, and put him on a 504. They said he had progressed and didn’t need to be on an IEP anymore. It was a mistake. Patrick’s grades went down, mostly due to lack of organization skills. He didn’t have a buddy system in place and his problems with bully’s were worse. At home, Patrick was depressed and talked about suicide. He was in therapy to help him (this started in 4th grade), but things were just bad. We hoped things would get better the next year.
It didn’t. Patrick ended up at the local mental hospital for evaluation for suicide. Most of the problems were caused by his lack coping skills in dealing with the bully’s. Therapy wasn’t helping, so all I could do was just talk to him, talk to the school, and try to make things better. I managed to get the Vice-Principal to help me in dealing with the bully’s but also Patrick’s academics had gone down.
I should tell you that Patrick, in 5th grade had been seen by one Pediatric Psychiatrist. Now this doctor only saw ADD/ADHD kids. He saw Patrick for a short time and automatically assumed he was ADHD, even though he could tell me what Patrick’s specific symptoms were. I mentioned Patrick’s older brother with autism, and wondered if that could be the underlying problem. I specifically asked about Aspergers and the doctor gave me an unequivocal no on it. He put Patrick on Ritalin, which was a big mistake, and Patrick didn’t get any better, sooo, we took him off it. Next, we saw another Pediatric Psychiatrist after Patrick severe bout of depression, and she diagnosed him as Aspergers suffering from depression. She put him on Zoloft and Wellbutrin and its worked wonders. Patrick no longer gets suicidal and as of now is doing with friends at his new school.
I can tell you, that other than depression, lack of social skills, and some academic problems, Patrick’s Aspergers has been far easier to deal with than Dewane’s autism. Patrick is extremely bright, verbal, loves to read, loves to create things, and is very loving towards most (I have to leave out his sister) of his family. He’s a pleasure to be around.

Kelly
I have to go into a little bit of history about one of my major problems and that’s DID or MPD (Multiple Personality Disorder). I was severely, sexually, physically, emotionally and mentally abused by my family and friends and strangers. Because of this my Aspergers is different from that of Patrick’s. I have alters (alternate personalities) that are at different levels of autism. Most of us are Aspergers but there are at least 2 or more that or either extremely autistic or mildly autistic. It’s possible I have mild autism but had to develop a lot of skills in order to survive. I learned I have autism from watching my youngest child, Patrick. I noticed a lot of characteristics that were similar. For example, I’m extremely obsessive, have problems with gross motor skills (for example, running), I miss social cues, have difficulty in math, yet I’m extremely intelligent, verbal and creative.
I went back in my memory, such as it is, and learned that one of the first signs of my autism was spending a lot of time alone fantasizing. Also, I taught myself to read. I remember having difficulties with friends, I had very few of them and I didn’t know how to make friends.
Now, this part is abuse and may be difficult to read. My mother and my sister called me retarded due to my inability to do things like them. They meant it as an insult and were being abusive. My kindergarten teacher also called me retarded and when I talked to myself in class, she would lock me in a closet. They had me tested at school and instead of being retarded, it was found that I had a 140 IQ. Something was up.
My father had also called me retarded after telling me the story of the IQ test, when I told on him after he sexually abused me. My grandmother had called me retarded as well, and still treats that way to this day. Because of this I’ve ALWAYS wondered if something was wrong with me, and finally, with my two sons, it all made sense. I had Aspergers or autism too. I went to my therapist to find out and she confirmed it. Now, it all made sense. My inabilities, my sensory problems (I’m hypersensitive like my sons to certain sensations) and my intelligence. I could finally work on it and take it into account with my therapy. My therapist at the time, who diagnosed me, didn’t work on my DID (she didn’t believe I had it) and worked very little on my autism. We did some coping skills therapy for my sensory problems, such as touch for touch, taste for taste, etc… (this mostly has to do with sensations from the past, or body memories. My current therapist is working on giving me more coping skills to deal with body memories and emotions before we try EMDR. We’re still getting to know each other and I can tell her what I need as far as my autism. Most of the time I just watch my two sons and see how these intelligent kids take care of their autism and I follow their lead. As of today, as far as my autism goes, I’m working on helping my alters with autism become more functional. I’m trying to be more functional in my daily life and get out and do more things (coping with DID AND autism is a major pain in the kyber, if you know what I mean). I’m working on my lack of social skills by talking to my husband. Mostly, thank goodness, I’ve found that people are not as put off by my social awkwardness, they’re charmed by it, which I find to be helpful. I’m practicing my math skills and I’m trying to be as creative as possible in all aspects of my life. I’m not as well off as some people right now, but I’m getting better.

For more information on autism, goto Aspergers and Autism Page
Or
What's It Like To Be Autistic?
To contact me, goto hobbittmom@aol.com