Topic : 01/17 Extreme Disorders

my son was recently diagnosed aspergers/a typical autism. finally after 4 years of school assessments, testing, charts, meetings with schools, we are finally there. I thought i would feel better after a dx but i feel worse. I want to fix it but I cant. My son is not mainstreaming in the classroom, hes choking, hitting at school. They are not worrying about his academics at this point only behaviours-theres a team of 9 of us and we are concentrating on "anticipation" and "transitions" for now. He seems to lash out on me only. I know when I come through the door from work by looking at him what kind of evening we will have. he gets a dazed look on his face. he then starts pulling my hair, punching and he doesnt seem to know hes doing it. I have to hold him down on the floor and hold his arms. I tell him to take 3 deep breathes. He refuses but finally does. It seems like hours when this happens but its only 10-15 minutes of struggling. When he finally snaps out of it he walks into the living room to watch tv and its like nothing has happened. My oldest boy has helped me many times. Hes finally understanding what his little brother has. After an episode like that my aspie son and I are totally physically exhausted and I am emotionally exhausted. Hes a big kid and getting stronger. I worry about that. He is on no meds as of yet as I am in the midst of thoroughly investigating that first before i make that leap. I know in the back of my head that he needs to be on meds. He has often said outloud and just recently that he is going to kill himself.. I know he is in a difficult place. I am so worried and I am not taking those comments lightly.My husband and I too are "just friends" over this. He is not dealing with it and I am the advocate and feel like I have no support and cannot find any. There are waiting lists, applications to fill out. I just feel like screaming and saying, "please someone help me deal with this". If it wasnt for me my son would not have a diagnosis. All my letters, observations I have forwarded to the dx dr. My husband has done absolutely nothing but scream at me and say "just wait"! I cannot wait.Now he is mad because I have gone over the psychologists(our team leader) head and have contacted the school division and requested/demanded a personalized coach that specializes in aspergers for his emotional needs, his disorganization, to protect him from bullies and for his academic needs. Passive parents dont get anywhere and I told my husband that. I guess he has to deal with it in his own way however he has not read a book or watched a program and has not offered to take me to aspergers conferences. He told me that he does not want him growing up to be "spoiled". I keep telling him that our son does not understand and does not understand non verbal communication. Its so hard to get through to him.so Im dealing with a son with rages, sucidial tendancies, depression and a husband and 2 other siblings that dont understand.I pray to God everynight to give me the strength to get through each day. I do take one day at a time-baby steps.I do not know at this point what kind of drug I will want him to be on but I want to make sure its the right decision before I do it. I feel like I have lost my little boy . I feel like this whole situation is a nightmare and I haven't woken up.

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 

  

  

It is Autism Awareness Month and it is very important that we all reach out to one another and to the media and the medical community and make everyone aware of this growing medical issue.  Autism has a wide spectrum and just because you, your child, or your spouse may not fit the STEREO Typical Autistic Mode, does not mean that Autism is not the issue.  I am not suggesting that we look for something that isn't there but as Nancy from Brain Matters says; "If it walks like a Duck, quacks like a Duck, it's a Duck!"  So if you think there is a problem, check into it and probe for the answers. 

  

The newest stats state that every 20 minutes a child is born Autistic, as I meet more and more people and share my story with, the more convinced I am that this is a bigger issue in our society that being acknowledged.  Not that Autistic individuals cannot live productive happy lives but we need to understand what makes them tick and allow for their differences however at the same time we need to help them understand our differences as well and find a way to work together to make this a smoother road for us to travel together. 

  

Regarding Alex: 

  

Alex does well in a contained situation.  He is doing so much better in school and at after school activities because they have structure, which he fights at home(!), and that's putting it mildly.  As well as Alex does at school at 15 his social skills are not equal to his classmates and that is a struggle for me as his MOM. 

  

Alex does not always see the differences in his social interactions, but as a parent I know the phone does not ring for him and no one recommends that he join them at after school activities or just to hang out on the weekend or during school breaks.  Alex is so kind that he accepts the fact that his classmates have other friends and that they are busy.  He doesn't take it as being left out but in reality he is.  So when not in school Alex is sitting in front of a game machine and has no idea that time is passing him by. 

  

When I get home from work he is angry because in his mind he didn't get to do all he wanted to do, HAVE ENOUGH GAME TIME!  Often times he has been home on his own for 4 + hours. 

  

Because Alex does not always think things through when we leave the house we must lock up our bedroom, computers and we have limited calling options on our phone so he cannot get to 900 numbers or anything that will COST MONEY or be inappropriate.  Yet when Alex is calm and in therapy he can identify the WRONGS from the RIGHTS but when in the moment it does not always translate. 

  

To keep Alex calmer and to reduce the meltdowns I have had to learn to walk on eggshells.  Anything that comes out of my mouth or his dad's that he hears as being negative or a correction in behavior sets him off.  When I feel I have to say something I often times have to back down before he becomes WWIII.  Therapist can tell me all they want that I have to be firm and consistent but come live in my four walls and see and hear what happens.  (Just review the Dr. Phil tapes and you will see what happened in the past, and the only way I have been able to keep the peace is to walk on the eggshells and pick my battles.)  The problem is that Alex is learning to have it his way. 

  

Alex is a great kid.  Smart earning his 3.3 + GPA each quarter.  Alex has a beautiful singing voice and he is determined to either be an American Idol some day or have someone find his talent and provide a platform for him to use his talents.  Alex loves sports and is an encyclopedia of knowledge, he first love is baseball (The Cleveland Indians) and he dreams of being part of their organization some day.  Alex has a heart of gold and is always ready to help others who are in need.   

  

However Alex is in need like many of your children and the affordable help is needed now.  Sadly we are still struggling like so many others to find Alex the affordable help he needs.  It is not just medication ($1000 per month) but it is more extensive Behavior Therapy for him and us.  It is job training so that Alex can begin to understand the terms of work.  It is follow up medical visits to make sure the medications are correct and seeking additional therapies and treatments that will allow Alex to fit into society without us hold his hand and handling all the everyday things like making his bed, reminding him to take his pills, brush his teeth, eat properly, etc..... 

  

So as I began it is Autism Awareness Month so share your stories and let everyone know what it is you need for YOU and your child.  Not only do I need to share my story of Alex but now with my husband fitting the ASPERGER Mold I need to reach out to the  medical community to help him as well.  And then there is you and Me, the CAREGIVERS who need help to get through each day. 

  

Please continue to stay in touch and know I care about each and everyone of you. 

  

Karen Hale 

kikione1@cox.net 

  

  

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 

thanks for your comments 

  

today is just another day in the life of an Asperger Parent 

  

Please know that the Dr. Phil show took our story and created a show but Alex does have Asperger's, ADHD, Mood Swing Disorders as well anxiety. 

  

Whatever the story line the we need to find answers and treatment for our children. 

  

Support for the family is needed and there is not enough support in our community or many of the other communities that people have written me from 

  

Autism needs recognition and I will continue to work to make this happen for Alex and others. 

  

Keep sharing information with us and others. 

  

We need to work together. 

  

Thanks, Karen 

My stepson was diagnosed as ADD. I married his father when my stepson was 16. I'm not sure if my presence was a catylst or whether the timing of the possible onset of more severe mental disorders just coincided. Maybe some of both.  

  

After witnessing toddler-type tantrums after my stepson turned 17, we sought psyciatric help. The rages, hitting the walls, cursing, veiled threats, esculated.  

  

We attempted to provide the structure the counselors suggested, the my stepson only became more defiant and rageful.  

  

Per the counselor, my husband requested help with normal household situations/chores. My stepson was to have flushed the toilet after himself, put his dirty clothes in the hamper, hang up his clean clothes in the closet, and rehang the hangers in the closet.  

  

My stepson refused to do any of this, but oOnce there were consequences, which would have normally be handed out to grade-schoolers, 3-strikes, 24 hour restriction, he cleaned his room, flushed the toilet, etc.  THEN like clockwork, two or three days later would have a major rage / meltdown.  

  

We noticed consistent mood swings, around the 20th or so each month, where he would rage and throw tantrums.  

  

My husband approached the doctor about taking him off the stimulants he was taking for his ADHD because of the rages.  The psychiatrist agreed that the dexadrine could be a contributing factor to the rages.  

  

Rather than do the minimal things my husband asked of him, my stepson chose to go live with his mother.  

  

I honestly think that he thought he would have the cell phone service, his truck, and come and go as he pleased.  

  

When my husband refused to allow him to take the truck and I canceled the cell phone service, he told folks that we had thrown him out in the street and the only reason he went to live with his parnoid schizophrenic mother was that he had no other place to go.  

  

I am a low-key, low-drama type of gal. The experience with my stepson was bizarre and frightening, especially since I seemed to be the brunt of a lot of his anger.   

  

My heart goes out to him and to his mother, and I truly hope that they both get the mental help they need some day.  

  

As per the counselor, psychiatrist, and attornies advice, since my stepson was 17 and the mother refused to have him tested (which my husband offered to finance), my husband stopped communicating with either of them, due to their verbal abuse and harrassment. He and his son have not spoken in over a year.  

  

I've often wondered how he will be able to get, let alone keep a job--because he didn't get the structure he needed when he was younger.  

  

Since his mother refused to allow him to be tested, we are uncertain of his actual diagnosis.  The mental health professionals tend to suspect ADHD, Aspergers, Schizo-Affective (or Bipolar), and possibly paranoid schizophrenia. 

  

By letting him have his way, by picking their battles, by making excuses, and ignoring unacceptable behavior, I feel his mother, and, yes, my husband did him no favors.  

  

Both his mother and he seem to exhibit various symptoms of mental disorders. For that I have a great deal of compassion.  

  

The one aspect that I don't seem to be able to comprehend, is that is the hatefulness, meaness, sense of entitlement, lack of empathy, lack of caring and compassion, self-centeredness, etc.,  part of the mental illness/disorders, or do they both have mental disorders and have negative personalities as well. 

  

  

I am the custodial stepmom of four children three have "special needs" with diagnoses that include PTSD, add/adhd, OCD with autistic tendancies, schizoaffective disorder, bipolar disorder.  

   

One thing that I found most helpful was actually trying to connect with the other parents in my children's classes especially the parents of children with disabilities.  

   

When my stepkids were younger I would schedule at least one "play date" per month--where I'd take them to the movies, arcade,  the beach etc.  (not a group just two, one of  mine and one other).  This helped with the social "isolation" my stepkids often experienced as a result of their disabilities.  I would also encourage my stepkids to invite a friend/classmate along on a family outing.  Typically, the biggest issue was not any of the children's disabilities, but the fact they were just nervous and excited.  

   

The result is that they managed to make a few friends and some of the friendships continued into their early adulthood.(Where, in my experiences the social isolation grew exponentially for my stepchildren.)  The result for me, was that I was able to connect with parents that could understand, sympathize and empathize with, for we as parents often become as isolated as our children.  

   

Also in our county/state there is a "Transistions Program" that serves "disabled" young adults 18 to 21 in getting started in life. (going to college, getting a job, independent living programs and even going on field trips) It includes both individual and group counseling and involvement with a work training program.  My oldest stepson, now 21 refused involvement in this program and now wishes he had done so he opted to go into the "regular adult behavioral health program".  My oldest stepdaughter, now 19 particpated in the program and has benefited greatly from it and is both working and attending college, and has made many friends through the program... My youngest stepson now 18 will begin the program in June and I will let you know how it works out for him--but he is looking forward to making friends and spending time with members of the support group--as he used to attend school with some of them.  

   

   

For my stepchildren, I think that graduating high school or the prospect there of terrified(s) them.  It helped to talk to them about what their plans were and what type of help they'd need to attain their goals.  

   

As for the video game time argument*heavy sigh* (haven't we all been there), perhaps you could contact local churches and  your son could participate in the choir(some churches even have bands and children's chours)?  Is he interested in anything that can become another hobby--even if it's puzzles, drawing, painting etc...A sketch book and charcoal pencils can go a long way.  At one time I went to the extreme and we had an entire year without computers and cable tv...It worked out in that when the computer/video games and cable tv came back....time limits were placed on how much of their time went towards "digital distraction", with bonuses on the weekend if their weekday behavior in school and at home earned them that reward.  

   

Does your son play a musical instrument? Can he read/write music? Perhaps music lessons would be good for him--not all lessons are expensive, is there a college nearby you perhaps a music major may come to your home and provide said lesson? (One of my stepson's counselors actually gave him a few simple lessons at counseling sessions giving all of us the confidence that I could enroll my stepson in "goup lessons" offered at our community center--which were very affordable--and they also offer scholarships).  Call around and find out what is available in your area I was surprised to find a "special needs" soccer league in my area...  

   

Keep your hopes up and keep seeking support for entire family. It does get better.  It took 11 to 12 years to find the "right" medications(and diet--as it turned out he had several food allergies that would cause mild anapylaxis which would cause him to panic) for my youngest stepson. I get teary-eyed when I think about all the tantrums and violent outbursts....not because they make me feel sad, but because I am happy that none of the violence has occurred in about six years now.  

   

DDmoe,  

who knows that there will never be a final answer to "What happens when they grow-up?"..and who sometimes wonder about, "Will they ever be able to live independantly?" Ahh there is always a new challenge--keeps life interesting though.  

   

I am reposting because there is little, if any, after school support for special needs kids........and irregardless of whether I'm a "step" or not....some of the info/ideas I posted needs to get "out there".... 

  

I am the custodial stepmom of four children three have "special needs" with diagnoses that include PTSD, add/adhd, OCD with autistic tendancies, schizoaffective disorder, bipolar disorder.   

    

One thing that I found most helpful was actually trying to connect with the other parents in my children's classes especially the parents of children with disabilities.   

    

When my stepkids were younger I would schedule at least one "play date" per month--where I'd take them to the movies, arcade,  the beach etc.  (not a group just two, one of  mine and one other).  This helped with the social "isolation" my stepkids often experienced as a result of their disabilities.  I would also encourage my stepkids to invite a friend/classmate along on a family outing.  Typically, the biggest issue was not any of the children's disabilities, but the fact they were just nervous and excited.   

    

The result is that they managed to make a few friends and some of the friendships continued into their early adulthood.(Where, in my experiences the social isolation grew exponentially for my stepchildren.)  The result for me, was that I was able to connect with parents that could understand, sympathize and empathize with, for we as parents often become as isolated as our children.   

    

Also in our county/state there is a "Transistions Program" that serves "disabled" young adults 18 to 21 in getting started in life. (going to college, getting a job, independent living programs and even going on field trips) It includes both individual and group counseling and involvement with a work training program.  My oldest stepson, now 21 refused involvement in this program and now wishes he had done so he opted to go into the "regular adult behavioral health program".  My oldest stepdaughter, now 19 particpated in the program and has benefited greatly from it and is both working and attending college, and has made many friends through the program... My youngest stepson now 18 will begin the program in June and I will let you know how it works out for him--but he is looking forward to making friends and spending time with members of the support group--as he used to attend school with some of them.   

    

    

For my stepchildren, I think that graduating high school or the prospect there of terrified(s) them.  It helped to talk to them about what their plans were and what type of help they'd need to attain their goals.   

    

As for the video game time argument*heavy sigh* (haven't we all been there), perhaps you could contact local churches and  your son could participate in the choir(some churches even have bands and children's chours)?  Is he interested in anything that can become another hobby--even if it's puzzles, drawing, painting etc...A sketch book and charcoal pencils can go a long way.  At one time I went to the extreme and we had an entire year without computers and cable tv...It worked out in that when the computer/video games and cable tv came back....time limits were placed on how much of their time went towards "digital distraction", with bonuses on the weekend if their weekday behavior in school and at home earned them that reward.   

    

Does your son play a musical instrument? Can he read/write music? Perhaps music lessons would be good for him--not all lessons are expensive, is there a college nearby you perhaps a music major may come to your home and provide said lesson? (One of my stepson's counselors actually gave him a few simple lessons at counseling sessions giving all of us the confidence that I could enroll my stepson in "goup lessons" offered at our community center--which were very affordable--and they also offer scholarships).  Call around and find out what is available in your area I was surprised to find a "special needs" soccer league in my area...   

    

Keep your hopes up and keep seeking support for entire family. It does get better.  It took 11 to 12 years to find the "right" medications(and diet--as it turned out he had several food allergies that would cause mild anapylaxis which would cause him to panic) for my youngest stepson. I get teary-eyed when I think about all the tantrums and violent outbursts....not because they make me feel sad, but because I am happy that none of the violence has occurred in about six years now.   

    

DDmoe,   

who knows that there will never be a final answer to "What happens when they grow-up?"..and who sometimes wonder about, "Will they ever be able to live independantly?" Ahh there is always a new challenge--keeps life interesting though.   

    

The DSMIV (1994) has classified Aspergers as autism, spectrum, but separate. I agree, It's the impact on the spouses and children thatis the great tragedy in this syndrome. cheers, judy

Hi, 

  

I live in Australia and this show was aired today. Reading all the messages listed has me wondering when will Dr Phil do a show for us parents. I am a mother of a 7yo with AS and a 5yo with autism & I know from my own experience and all the other parents that I have since met that one of the hardest things to achieve is inner peace. Especially when you are living in an unpredictable household. When do we get to a point when we wake up and don't dread the day ahead? How do we get to that point? How do I become me again and not just the mother of two kids on the spectrum? I accept my kids are on the spectrum but the reality of it is still so surreal. I would love to see a show on how to overcome all these emotions and to be truly happy on the inside and not just putting on the face that everyone expects to see. I'm sure it will also help other parents with children with other disabilities. The one thing I've discovered is that we all go through the same emotions. 

  

I apologise if a show like this already exists but we're a bit behind our Dr Phil viewing over here. 

  

Thanks for taking the time to read this 

  

T