Messages By: sdauback

I am sorry you are having so many problems getting your son correctly diagnosed and I completely understand your pain and frustration. The longer your son goes undiagnosed, the more time you lose in getting the intervention he needs, if he is indeed Asperger's. 

It is generally not uncommon for an Aspie to have a comorbid, but to have several is highly unlikely. My daughter has AS with comorbid ADHD. HOWEVER, many symptoms of other disorders may present in Asperger's and be misdiagnosed by someone who is unfamiliar with AS. I would suggest your ask your ex to take your son to a neuropsychologist or neuropsychiatrist and ASK whoever it is if they have qualitative experience with autism spectrum disorders. 

My daughter has had symptoms since the age of two, followed by a very frustrating 8 years of doctor after doctor after psychologist, all of whom said nothing was wrong with her. Then, 2003 brought several misdiagnoses. It was only in September of this year that she was accurately diagnosed and I am still trying to get interventions in place while doing what I can at home to help her. 

If you have any questions about where you might take your son, go to the OASIS website and make a post. One of the girls can get you information on specialists in the state in which your son resides. 

I have to go pick my daughter up from school. I will check the board later to see if you have questions. 

Another piece of information that might be useful is that 99.9% of children suffering from Asperger's have social skills problems, or what language/speech therapists call "pragmatics". If you believe your son may suffer from Asperger's, have him tested by a speech/language therapist in PRAGMATICS. This test is more in depth than the average language/speech test given to children and, unfortunately, many AS children can pass the lesser speech tests so they slip through the cracks. It is usually the pragmatics where the AS is "proven" or tossed as a possible diagnosis. Social skills deficits are the most common symptom of all AS children from the research studies I have seen. The DSM-IV R(I think) has a list of criterion that children must meet to be "Aspie's". Be careful of shrinks who are specialists in one area of the learning disabilities (such as ADHD, bipolar, schizophrenic, etc.) because that is what your child will have. If you can locate a university close to your son that has a psychology department that does developmental disabilities' studies, that might be a good place to start. 

One thing to remember is that not all AS children suffer the same symptoms/behaviors and severity is also a question. My daughter does not have the severity of other children with AS. I will tell you about a few of my daughter's but your son may or may not have other symptoms that are AS that my daughter does not have.  

Other symptoms you might inquire about are motor tics. For instance, my daughter will put the thumb and middle finger of her left hand together and move her left hand back and forth spasmodically and become visually fixated on that hand while jerking her body spasmodically. Another motor tic is when she rises on her tip-toes, paces back and forth in a straight line, rocking her body spasmodically and, again, becomes visually fixated on it. 

My daughter is very concrete in her thinking. She often does not understand idioms. A funnier one is the day I was speaking to another adult about doing something she feared and I said "Sometimes you have to kick the dog that bit you." (This is a fairly common idiom in Arkansas, maybe the south.) My daughter was absolutely horrified and asked me why I would kick a dog. I then had to explain to her what I meant. Sarcasm is often lost on her when it is used by other people. Oddly enough, she gets most of my sarcasm because I tend to be a very sarcastic person. 

She has "meltdowns" or "tantrums" if she encounters a situation that overstimulates one or more of her senses. She is hypersensitive with smell. She cannot play video games or play for extended periods of time physically because she becomes overstimulated and loses control of herself. She has accidentally hurt other children before (and me) when this happens. But to tell her to sit down for a while WILL bring on a meltdown. When she is in the middle of a meltdown, I have learned to not try to reason with her because it only makes it worse. She has already been sensorily overstimulated and more stimulation makes it worse. I just get her and leave wherever we are, no matter what. She cannot calm down until I remove her from the situation. 

My daughter talks constantly. And I mean literally. She is very detail-oriented, often giving me details that are completely irrelevant to the main point of the story, but if I interrupt her, she often has to start over. She frequently speaks in a monotone voice and still cannot grasp what a whisper is. I am a big picture person and details such as what color clothing a person was wearing or hairstyle often escapes me and I begin tuning out the chatter. But, most of the time amidst all of that detail, my daughter is actually getting around to telling me something I need to know. So, I have had to retrain myself to NOT tune her out when she launches into one of the "detail" stories. For instance, one day she began a commentary on her day at school by telling me about a little boy who got in trouble on the playground, what he had done, what he was wearing, where the duty teacher made him sit, etc. and then finally got around to the fact that two teens from the high school had been taking my daughter's entire class of the playground at lunch and NONE of the duty teachers knew until that day...four weeks AFTER they first began leaving the playground with the teens. 

She has no clue about personal space and stands too close to people when she talks to them. Well, actually she talks AT them. My daughter cannot read non-verbal clues and will talk about her latest fascination to anyone who will listen without allowing the other person to get a word in edgewise (this is called perseverative). 

I have talked to mothers of sons with AS and sometimes children with AS will react violently, they will climb about, shout, have angry outbursts in school and other situations and any attempt to calm them results in the same reaction as my daughter...it only escalates the situation. 

Hope this helps some. Don't forget the OASIS website for Asperger's. Angie can probably get you the names and phone numbers of people to call for help. 

SD 

I hate that your children have, or may have, Asperger's Syndrome, but it is nice to know that other parents out there understand they day-to-day struggle raising a child with a disorder. I am a single/divorced mom and have raised my daughter by myself (with the exception of a very brief interim marriage) for 10 years. 

After all the hassle I have had with this school for 5 years over my daughter, I have returned to school to pursue a degree as a School Psychology Specialist with an emphasis in autism/asperger's. If you can't beat them, join them. I can't change them from out here, so I will get on the inside and work from the inside out to bring awareness to at least one school district about this disorder. 

Because our children look so normal, many people just assume they are "bad" kids or have behavioral problems when they don't. I just wish someone, somewhere in this country would raise public awareness of this disorder so our children do not suffer so much.  

My daughter had such a difficult time last year, even with her teacher, that I pulled her from school the last two weeks and wrote a six page letter to the school principal and assistant principal letting them know that they had egregiously violated my daughter's civil rights (I also named specific teachers' names in the letter who had mistreated my child) and I was calling my state's attorney general, the state Department of Ed. and DHS. I was amazed at how quickly they were calling me, wanting me to come to the school to talk things over and get an IEP in place for my daughter that should have been there in 2003, even with the incorrect diagnosis. There is, of course, background info I haven't listed here. The point is, I let them know in no uncertain terms exactly what they had done and that I was not putting up with it. They had allowed my daughter to be bullied all year, even by the teacher, and then when she got fed up and struck back, they saw her because she wasn't as crafty as her tormentors, who kept their behavior under the radar. As a result, I was called to the school because the assistant principal threatened to expel her. When I found out what had really been happening, that is when I pulled her from school, wrote the letter and called the agencies. 

DO NOT LET THEM RUN OVER YOU. Schools will threaten and try their best to intimidate you into doing what they want, and they usually get away with it. Human nature is human nature: Intimidation works for them, so they keep doing it. Find out what your child's rights are (look at IDEA and FAPE and whatever state provisions you may have) and put it in writing to the school that you are not going to be quiet and they are not going to get away with unconscionable violations of your child's rights.  

Be careful in choosing your battles, though. If it isn't really worth fussing about, don't. When you become the mother who is at the school every day complaining about something, they will not take you as seriously. It is like the "nagging wife" syndrome and gets you nowhere fast and certainly doesn't help your child. 

BTW, check out the OASIS website, if you haven't already. It is a great online support for AS parents specifically and you can pick up some great information from the parents. 

Wish all of you the best! 

SD 

Hi, 

I have been divorced from my daughter's father since she was 3 months old. My ex-mother-in-law caused a lot of problems in our marriage and contributed to our divorce very heavily. She moved back in with him within two weeks of my leaving him with our 3-week old daughter. And she has been there until about a months ago when my ex's third wife threatened to leave if my ex didn't make his mother move out. Now, my ex-mother-in-law is doing to the third wife what she did to me. 

The point is...when my daughter was around three, my ex started exercising his visitation, which he had not done until that time. My daughter would often come back home crying and clingy and insisted on sleeping with me. I continually asked her what was wrong, but she wouldn't tell me. 

Finally, one weekend my daughter came home hysterical, crying, screaming "Mommy, please don't die and leave me!" When I finally got out of her what was going on in my ex-husband's house by his mother (his mother was telling my daughter she was going to kill me so my daughter could live with them), I filed an immediate injunction to get visitation stopped. And, it was stopped before the next visitation weekend.  

The court ordered my husband to go to therapy and, while there wasn't anything I could do to his mother,  I got my message across. When visitation resumed about 2 1/2 months later, I didn't have any more problems with them telling my four-year-old things like that. 

If your daughter's grandmother has no visitation rights, stop letting her go. If she does, call an attorney and see what you can do. If you are short on money, find the local legal services office in your area and go ask for advice or a free lawyer to help you out. It is better to err on the side of caution with your daughter than take the chance your ex-mother-in-law is telling her things she shouldn't be told. 

Put your foot down and let her know you mean business. If she wants to see your daughter, she has to play by your rules. Period. 

BTW, my ex has not seen my daughter in 4 years now. 

SD 

If the grandmother is telling the daughter bad things about her mother, grandmother needs to be stopped. A 4-year-old doesn't just come home angry with Mom after visiting Dad's mom for no reason. I would be willing to bet grandmother is saying things or telling the child things to turn her against her mother. 

If all else fails, take her to a child psychologist, because something isn't quite right with the visual I am getting. Grandmother is most likely up to something and the child shouldn't be put in the middle by mom, it will only make it worse and may actually reinforce anything negative grandmother may be saying about mom.