Messages By: karen_kiki

Karen 

What has happened since you have been on the show? I have a son who is 14 and has asperger's . When we went to his doctor last I asked him about the brain imaging and medication. He said if was still years away and still trial and error with the medication. My son's biggest issue is homework. he just can't do it. He will do projects and reports, but he general day to day homework is impossible for him to do. Even with and IEP he is failing three core classes because he won't any homework. any sugestions? 

The irony of that show being seen by both my husband and I that night was not a surprise.... My son is 17 yo and we had just had him admitted for his first psyche admission earlier that day.  Imagine my surprise to see this program on that night when I got home.   

 We were feeling incredibly guilty over having him admitted, but we were finally at a point we were so exhausted, that we were both afraid something would happen to put our family in danger. 

I also have a 14 yo dgt who excels in most things that she does.  This tends to compound his situation, because he feels so negative about himself.  The behaviors that were shown on that show, are typical of what my husband and I deal with on a daily basis.  We have been asking for help all along, but as I've said before, (there's no worse disability than the one you can't see!!!!).  It took many phone calls to have him admitted for his and our safety.   

Since then, we have been able to get DMR(dept of Mental Retardation), to give us an aide 2x week to come and give us some respite and to also help Conor  work on self monitoring as well as setting goals for himself.  He is low functioning with iq at only 64..... He gets incredibly frustrated easily and can only take on one task at a time with maximum supervision to get this accomplished. 

Through all of this, he is an incredibly caring, loving and for the most part upbeat kid..... My best hope is that he can live in a group apt with a social worker who can oversee his daily adl's so he can live to the best of his ability. 

This has put an incredible strain on my husband and I as well as my daughter.  It has been comforting to see we are not alone.  It takes, love, perseverance, and fortitude to push through the bureaucracy to get what he needs.  Knowing there are other like us going through this, helps to know that we are not alone. 

I'm so happy to know that others are willing to share their experience hope and strength. 

thank you all for being there. 

Asperger mom to a great kid. 

Taryn 

I know what its like to be on eggshells all the time. My son is 16 and has AS. I thought his problems stemmed from being in a body cast when he was smaller, missing out the developmental sequence of walking before talking and the fact we lived on a farm, and the nearest neighbor was a quarter mile away. He would get hyper when he saw other children, like he absorbed the energy around him. He hated change; if I told him something was going to happen and it didn’t he would get very upset.  

I thought his problem was he didn’t have anyone but me to play with and it was isolation that was causing the problems. Therefore, I put him in daycare. It was a coop so I was there once a month with him. He was fine when I was there but when others were watching him he would stay off by himself and not participate in anything until the last moment then get upset that he missed it.  I took him to story time at the library I tried to get him into anything I could think of so he could socialize. I even had him in tap and gymnastics hoping they would improve his motor skills. He couldn’t stay focused and tried very hard with tap but just did not have the coordination and would get frustrated. 

The trouble didn’t really come until he started school he was a little guy and he would get excited and throw himself on the floor and not sit in his seat. The public school my son went to have the idea that kids are mean and you need to build a thick skin. Despite my protesting of the treatment the kids was giving my son. The teachers had little patients with him. He had one teacher that liked him so much that she followed him all the way to the 7th grade. He did well in her class but couldn’t concentrate in the others. He was diagnosed when he was 9 and was put on lexpro for the depression then Concerta for the ADHD that went along with the AS. They took my happy baby boy and made him want to be dead because know one would stop the bulling. He thought this was his entire fault. From kindergarten until the 7th grade I tried everything to keep him in school to get the teachers and the administration to listen. We went through IEPS and had specialist come in he had therapists, councilors nothing helped.  

Finally, he was expelled, when he threw a pencil at the principle who brought a cop down to the room that my son was trying to calm down in after a meltdown and was pepper sprayed, in the 8th grade and the ISD decided to put him in there EI program to get him out of his home district. It was as if night and day… the new school bulling and teasing was not tolerated. Anyone caught teasing my son or anyone else for that matter but primarily my son and setting them off got auto suspension. His grades went from failing to As and Bs, he had an Aid that keep him focused on what he was to do. All was great until High school where there were cutbacks and because my son was doing so well they took his Aid away and put him in general Ed. He couldn’t handle the frustrations he wasn’t teased very much because they new what was wrong with my son.  

The principle really liked my son and did everything he could to keep him in his school but it didn’t work they couldn’t afford to give him an aid since he was school of choice. He was becoming a loose cannon, they couldn’t predict when he would go off and had already ticked two teachers on two separate occasions and almost hit a girl with his backpack because she was rude to him. As the principle said he is hit with a double whammy… hormones that make boys do stupid things and AS not being able to control temper.  So now he is home learning on the internet. He misses the friends he finally made but we are working on getting him together with them. After so many steps, back we are finally starting to make progress.  

Karen 

Exercise is the best thing you can do for yourself and a little Lexapro doesen't hurt. I'm not an advocate of medication but I have a family of six to maintain in the mist of the coas. I am fortunite to live in town when they do Asperger Reseach at the University and my thearipist has a son with AS. I have a Doctor who has had alot of expience with AS and my son does take medication. This has allowed to be in school and be somewhat "normal" However, with all this available I still feel like their is more unknown about AS and treatment than is known. This is frustraing to me. I have to take it day by day. When I think beyond the day to far that's when the arguements begin. 

I have been Blessed with a school that has work very hard with me to keep him in school and on track. That will end this year when he moves to high school. I hope that I get the same help and cooperation there. 

all for now 

This show presented a very negative and misleading portrayal of Asperger's syndrome.  The jury is still out as to whether to classify Aspergers and High Functioning Autism as one and the same thing as there are some minor but distinct differences, but for the time being the experts are treating them as the same.  It is a SPECTRUM disorder and individuals can lie anywhere on that spectrum from the more extreme behaviours as shown on the programme, or to just having a 'shadow' of the syndrome or personality type, where difficulties show up under certain conditions.  The behaviours shown were really those of comorbid disorders such as Tourette's and ADHD.  Many AS people or 'aspies' of course have few  outward ly unusual behaviours but their difficulties lie in non-verbal communication, emotional reciprocity and the validation and empathy that is essential when in an intimate relationship.  Because the condition can be so mild is often goes undetected until well into adulthood but creates enormous problems and damage when in personal relationships.  Asperger's syndrome has really only been recognised officially for about 10 years, so there are a huge number of adults who remain undiagnosed.  Many people recognise they have this condition when reading about it or from their partner's learning about it, or when a child is diagnosed and the family looks at the family history and realises a parent/grandparent/uncle etc has many of the characteristics.  Current estimates in the population are about 1 in 100 people.   Famous people include Steven Spielberg, Bill Gates (not official)Einstein etc. Popular television also abounds with aspies - (Dr Gregory) House for example.   

It is likely that Aspergers is responsible for a high number of marriage breakups - many women who are especially compassionate and nurturing (often nurses, teachers, psychologists etc) are attracted to and admire the intellectual abilities of aspie men.  If this condition is unrecognised the woman  (most aspies are men) ends up emotionally exhausted and often depressed.  (I can write pages about this, but not here).  There are support groups for women (and men) who find themselves in this position as conceptualizing the problem to others is difficult, as when people complain they are  met with scorn, ridicule and scepticism.  Most health professionals know very little (some even mistakenly believing children grow out of Aspergers) and only a handful of psychologists and counsellors are experienced in dealing with Asperger relationships.   

There is quite a lot of information out there about children with Aspergers but very little for adults.  What happens when they grow up?  I think this topic has not been tackled by Dr Phil  because the usual "behave your way out of a problem"  is insufficient to deal with something so complex, and only a handful of psychologists worldwide specialize in this order, especially the mild end of the spectrum.   (Actually, Dr Phil had an aspie right under his nose but missed the signs - I refer to Grant on the 'wifestyles' episode - read my postings on that one). Grant  doesn't behave that way because he is an engineer - he is an engineer because aspies seek out that kind of work because they are good at it.  If you are very familiar with aspie thinking versus NT thinking, you can see the distinct differences when you analyse Grant's postings (i.e. "gallen") and compare them to Kelly's - linguistically they are very different and you can see how Grant really struggles with concepts of emotions, especially Kelly's.     

 Academic psychologists who study the neurological bases for autism are mainly concentrated in England (I've been told it's because there is a high concentration of aspies there, who are attracted to train-spotting societies etc. ) notably Simon Baron-Cohen whose books are excellent.  I'm going to request Dr Phil do a show on Asperger marriages.  I think it will be his biggest challenge but it is a silent epidemic.   

Here are the best websites I know: 

www.tonyattwood.com.au  - the world authority on Aspergers 

www.faaas.org - info and support for families of adults with AS 

www.maxineaston.co.uk - psychologist who specializes in asperger marriage counselling 

www.asperger-marriage.info - husband and wife team who travel/lecture/write books. the husband is AS.  Click on the guest book to read hundreds of accounts of people in asperger relationships - most of which are undiagnosed. 

Also check out the websites by Temple Grandin, very well known as a high-achieving autistic. 

I hope this info helps some of you