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COMMENTS & QUESTIONS [for June, 2015]

 Do you need some assistance in parenting your Aspergers or HFA child? Click here to use Mark Hutten, M.A. as your personal parent coach.

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My family and I currently live with husband's sister. My husband and I have a son recently diagnosed with aspergers and a daughter. So you can imagine.... His sister has one 3 year old and the live in baby daddy! I am beyond overwhelmed!!!! Let me explain....my husband maybe has aspergers we do not know but he said he was diagnosed with ADHD. So when I have these issues from all the changes which would even be much for a normal child so to speck, my husband is not very empathic and i am left to pick up the pieces of my heart soul and mind....I feel alone emotionally and financially since due to lack of focus on the job ....he keeps on losing them as a result we are homeless and of course he blames me since I should have got another full time job besides the full time student part time navy and full time mom taking my daughter to school activities girl scouts etc. I have seen positive changes in my husband as far as temper since we have lost well everything....however he started a new job and is not on meds I am very very afraid....now done with college I am looking for a full time civilian job when I would much rather stay at home an ensure my son gets the counseling and the therapy needed my son just turned seven!!!!  I am in this house trying to calm my son with the sister whom I do not thing many people get it is not my parenting not all the time my son has a brain disorder....but I feel judged for this too like I am a bad mother and my son listens to my husband since he is meaner or uses more anger scare tactic then I do....I believe in not taking my anger out on my son but I believe is discipline. Any words of encouragement since I feel ughhhhhhh!

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Hi Mark ---

Things are completely out of control - but maybe it takes break down to/before breakthrough.

After Inhad paid off my credit I  loaded them back up (groceries, gas and sending Chris to real estate school)... I am hoping something comes of that.
Chris was recently summoned as he continues to dodge debtors.
I don't believe he gets/understands, but he certainly does not at all - contemplate the possible consequences of his actions. That alone, has been terrifying. 
I am afraid to leave the house for what he might/might mot do (he's left gates open 3 times (in as many months) leaving me to scour the neighborhood for my very beloved dogs.

His tiny rental house went into FC -- after being squatted in and costing him dearly in money, time and stress. He borrowed a substantial amount of money from his sister to save it, but 3 months later he was right back in FC.
I have someone working with him now to try and save it - have him SELL it, pay me back the money he owes me (and others) - and with the minor bit he has left over, either have something for himself or get an apt or small rental somewhere.
This has been heartbreaking yet he has dismantled my life - and sanity.

I told him that one of the conditions of his staying here (for next few months) is that he arrange Skyping with you.
Understand that he is entirely open to that, he only becomes agitated because of time/$ -and --- he is intimidated by electronics (I'd have to show him how to Skyoe).

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Mark, good day.  Mike Cannon here.  My 20-year old son who is struggling in community college and has aspergers.  I came across your website (apparently again) when I got frustrated and searched for anything on the web to assist me with a 20-year old college boy that refuses to complete his history paper (his professor gave him all summer to do it, and he mostly complains that he is still reading (takes him close to two hours to go through 5 pages)).  He has an "F" in the class because he did not turn in all of his papers.  The professor told him that the grade can be changed once the papers have been turned in.  The professor kindly gave him so much time because my son had an accident in February and fractured his skull and missed some classes.  My son has recovered from the accident, and the accident isn't causing him not to do his homework.

I advised my son that if he flunks this class, that I will not pay for him to continued in Community College.  That has not apparently phased him.  He can do the work, he just has to sit down and do it.

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Dear Mark,
In desperation I write to you. I have lived with an ‘Aspy” for nearly 40 years and yes the words responsible and reliable were the words his father used to describe him over40 years ago and they have stayed with me ever since! He is at the very high functioning level and is well respected in his professional field but seems to have all of the social/emotional difficulties you mention.  Raising children was a major time of misery although we had many happy times interspersed with anger. When our son was diagnosed with Asp at 7 , he recognised the traits in himself but to this day denies he is Aspy. After the children left home he became so much easier and after retirement even better to the point that I stopped considering leaving him.
Over the last few years a friendship he had with a younger former student of his …who was a naturally friendly woman….became more like an obsession…he secretly met her when interstate and sent  gifts without my knowledge . When asked he would lie which really surprised me because I thought that being an Aspy he would be very honest. I have spoken to the woman involved and feel fairly confident that although she should not have accepted the gifts she assumed they were from both of us??? She is willing to quit communications with him but he is not and is very angry that I  see  a problem with it as as far as he is concerned she is no threat to our relationship. (When married to a man who cannot express his feelings I feel more vulnerable.) Anyway he has proven to be untrustworthy many times in the last few years over this topic so I have finally suggested that I will close the book on his untruthfulness of the past if he can promise to call a moratorium on contact with her for 6 mths. He stormed off saying he might as well die!
What to do? I’m sick of hurting and feel that I’m being dragged down into a depressive state over this…..after all of these years …..

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     Good morning Dr. Hutten,
    
     I recently subscribed to your newsletter as a teacher not as a parent of a child with Asperger or high functioning autism.
    
     Perhaps you can steer me in the right direction. I have a 6th grade student, recently diagnosed with high functioning autism. He is so frustrated and angry with the world as he doesn't understand why, as he says, "so weird'. Are there any kid friendly videos I can have him watch? 
    
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Thank you Mark for the reply-

I have been following you for awhile now on YouTube and finally decided to reach out thru email.

13 year old with Aspergers,OCD, we cant seem to stop the impulsive behavior and stealing. I have read to my eyes hurt and we can't come up with anything that is working. It is a control thing that we as parents can't control.

We are seeking residential treatment as I type to see if we can get him extensive assistance as we fear he may get in deeper trouble.

He is a single child in a home of three, has the world at his finger tips but is choosing negative actions of control to make his way thru his young life.

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Hi Mark,
It's me again. The single mom with a 3 year old girl with Apergers.

They still have trouble diagnosing her objectively. |I strongly feel she has social ecohlioa (which i learned about reading online). I also see Pathological Demand Avoidance happening...which i read about on I AM AN ASPIE GIRL. Whatever that is. lol
It's crazy that she has so many things to contend with   ooh and me too since I live with her.... Amoung everything else it seems SPD, Dyspraxia, apraxia, severe separation anxiety, Mast Cell Activation Disorder.

I am writing to you because I am retaking the video/online course, and I wanted to tell you that your work and wisdom is amazing and changing the course of our lives!
All the tools you give. WORK. Which is also why I know she has this condition,. because the solutions WORK.
And I am an educated mom who has been taking local parenting classes since she was 7 months old, when she was angry and defiant!

Know anything about social ecohlia? She fools every tester with an incredible acting performance. Only when I video tape her at home in the privacy, when she is being her do you see her social and behavioral symptoms.

Thank you for doing this work!
An appreciative mom.

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Mark

My younger son is 20 and he lives with me and my older son. My older son is 24, Aspergers. My oldest son is very agreeable for the most part. Doing better everyday. I learned alot from your audio presentations. So I have expressed to my older son that I will be expecting more out of him. Work etc.

The problem is my younger son. He has always been hyper and most of his life he didn't fit in causing issues with teachers, parents. A couple run in with the law, pot, trespassing, riding the train without a pass. He also has taken our cars on occasion. last night again he took his brother's car. Smoking cigs and riding his friends around stoned. No license and no insurance. My question is how do I deal with this? I love him and have invested a lot to keep him out of trouble. He works one or two days a week to help with room and board. I have probably done too much. If I throw out he will probably fail. Or is that just my fear. Sooner or later on this path he will get in trouble with the law again. Stealing or worse. Your thoughts?

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Hi, i've enjoyed visiting your website on aspergers and gluten casein free diet.  i've just begun avoiding gluten in my diet (i have tourettes add ocd anxiety and symptoms of aspergers) and am getting ready to cut out casein too. 
just had a question -
how much/little gluten/casein does it take to cause a problem and how long might it take to recover? 
i have a hard time with language (reading/listening/speaking), i didn't know if your site answered this question already, i've spent 30 minutes writing this email :). 

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I am interested in your materials and looking for more resources to help me cope and relate to my husband who appears to have ODD.  He was diagnosed with ADHD/ADD as a child but never treated.  This became clear to me recently, after struggling for 22 in my marriage.  He is in his 50s and I am wondering if the techniques in your materials will apply to our situation and relationship. Could you recommend any support or books that will help me relate to him in a positive manner and manage my expectations?

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Hey Mark--
   My son is going to Texas A&M in the Fall to pursue Engineering. He is very handsome and very kind.
   He needs better social skills,small talk,making friends,etc...
   He wants to be in a fraternity and I wanted him to brush up on social skills. That is only area he is lacking.
   Is there a camp or class for a week anywhere that could help him?
   He is not a severe case...any suggestions?

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Thank you for such a quick and kind response.  I work with preschoolers and have felt mostly confident raising my two children (boy and girl) up until now, but now my son is 13...my daughter will be 12 soon.  The teenage years are new to me.

I have lots of questions!  Your newsletter looks great; thanks.

I look forward to future issues,

Juliet C.

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Mark,

I found your website trying to figure out how to help my daughter. Can you please let me know if this information touches on the Aspergers child having a child? My daughter is 23 living at home with her 4 year old son and she does nothing, not even to help support her child. This is the area I need help with. She was kicked out of are area housing because she could not keep her apartment clean. Any help/information would be much appreciated.
Thank you in advanced.


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Hello again Dr. Hutten

Thank you so much for your work with people on the autism spectrum.  This is a new discovery for me in the last 1-2 yrs.

I'm pretty sure my husband has aspergers, as it's in his family, and I see many markers in him.  I want to talk to him about it, ask him to take an online test, but afraid he will be defensive and say,"yeah,so what?" I so much want to have open honest communication about it.  We're Christians and have struggled most of our 24 yrs together!  Can you give me a little advice on how to approach this?

Thank you so much.
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Mr. Hutten:

I am currently undertaking an independent project with the chief focus of addressing the positive characteristics of individuals who are diagnosed with high functioning autism, often refereed to as Aspergers' syndrome as you well know. 

My primary objective through this e-mail is to attain information which might assist me in creating a piece that fosters a better understanding of this disorder, so that perhaps employers would be more willing to hire such individuals as a result of their strengths and not simply see their social weaknesses.   

I have read a great deal on Aspergers', yet I'm curious,from your standpoint at least, what might some positive characteristics of this group be in the workforce?

Thank you for your assistance in this matter.
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Hello Mark,

In trying to research some issues that I have with my son, I have come across your ebook Teaching Social Skills and Emotion Management.  Can I first try and explain my son to you. I have, up until now, not sought any help or advice on these matters, probably because we have never had complaints from school.  The problems are at home.

I have long thought that he lacks social intelligence. He is not a boy with close friends. At school they say he gets on and is liked by everyone. However, over the years, whenever he has a friend back to play, he normally just ends up annoying them and doesn't know when to stop. Luckily, he has a boy next door to play with now, and they play out, normally football or bikes, whatever the weather. If they do come inside, it often deteriorates as my son gets bored and annoys the friend, who often just takes himself off home.

My son has rarely engaged in imaginative, creative or role-play. That kind of play would always have to have been led by an adult or peer very much into that that type of activity.

He does have, however, incredible physical intelligence, energy and stamina, and is able to turn himself to and enjoy all sport and physical activity.  This has been my strategy thus far - to focus him through these things, and these tend to be his only past times.

Sometimes he does seem to be incredibly intelligent (although he certainly generally finds school boring, and doesn't push himself, which is fine by me as long he is operating at a level which is good enough. I'm happier to push him in the things that do interest and excite him). But he also does have a naivety about him, an immaturity. Maybe these are just "boy" things,I don't know.

Although improved with age, he has always suffered meltdowns when not getting what he wants, or hearing what he wants to hear.  He seems incredibly egocentric and selfish, rarely seems to thinks about anyone else, his primary concern is always himself. He always wants to be served first at the table, have the biggest of everything, be first in a queue etc, etc. It is a complete nightmare and constant headache for his sister, not to mention myself and my husband.  He is also quite vindictive and bullying. He takes advantage of his sister's sweet nature. He'd like to take advantage of my nature, but I try to not tolerate his negative behaviours because they remind me so much of his Father (see below). He can also aggravate my husband, his step-dad of 4 years (but has known him for 7 years) to distraction, despite all the effort he makes to have a constructive, fun and fair-natured involvement with him.

He frequently doesn't understand everyone else in the family's humour (myself, sister of 12 and step-dad). He has his own brand of humour, which is usually laughing at someone else's misfortune or gaff - he enjoys ridiculing. He shares this with his father, from whom I am divorced, and with whom he shares many traits.  I realise, after many years of reflection, that they may both have traits of Aspergers, and that this may have had a large part to play in the breakdown of my relationship with my ex-husband.  My ex-husband always seemed to take advantage of and be mean to the people closest to him -  myself, his Mother and Father. I have long said that their (ex-husband and son) brains are wired differently, that is long before something like Aspergers was on my radar.  They never seem to have any comprehension of how their behaviours and actions affect those on the receiving end.  I have constantly found myself saying "how would you feel if you were in my/ their shoes?" And the response is always just blank, seemingly unfeeling.

It all sounds terrible down on paper, and I'm sure there are many things that I haven't mentioned. But my son does have these moments of sensitivity, where he does seem to worry about someone, or make the effort to have a conversation or joke. He seems relaxed during these moments, and consequently, we all relax. I can only describe them as Golden Moments, and they are few and far between. One of my biggest wishes is that life with my son was so much more like those, and much less like it is. It is so stressful.

So I guess that I'm wondering what you make of this situation. Is it normal? Is it Aspergers? Is it a personality disorder? Should I seek professional help or diagnosis (UK) ?

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I was reading about your ebook on the above subject. Our child has problems in this area and has been diagnosed with Pragmatic Language Disorder and Aspergers. His problems stem from his PLD in social matters. He cannot communicate his thoughts clearly to his peers and others. Does this book discuss issues and how to help a child with PLD? Do you have another publication on help with PLD or can recommend a publication.

Your help with this question would be appreciated.
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In a desperate attempt to find some resources today, I found your e-book on line and wondered if you would answer a few questions? I have just, with the help of a counselor, come to find that my husband most surely has Aspergers. You know how hard that can be, how hard marriage and parenting can be. However, add this layer, which is a feature of our lives: this is a second marriage. He has two children, who are perfect in every single way, and I have one child who is an absolute monster and can do no right. See what I'm getting at? Blending a family is probably the challenge of a life-time for anyone who does it. Try doing with an Aspie partner. It has been an unmitigated disaster. There is so much pain and damage done that I don't know what is going to happen. But the thought of leaving now seems very bad too.


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Dear Mr. Hutton,

I just need advise on what type of doctor I should search for a teen with both Aspergers and severe social phobia/anxiety/panic who refuses to go to therapy.  I believe at this point medication may be the best thing to get him into life.  I am just not sure whether to make an appointment with an Asperger specialist or just a psychiatrist.
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Hello Mark, I was educating myself about aspergers because my son's fiance's has a child with aspergers. She has no family support and limited contact with her father and with the boy's paternal grandmother. My son and our family are learning how to deal with raising this child. I am an educator and have worked with this population of children. My experience has been extremely useful. My son is having a difficult time along with his finance with the discipline part of raising him. I read your article and made a copy of it to give to my son. It was written so  precisely and described our child to a tee. The  comments made by parents was very encouraging. I hope all this information will help my son and his fiance.

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My son is 18 years old, I paid twice for drivers ed. He knows how to drive a car but I'm so afraid  of his lack of common sense and short term memory for learn the traffic rules.  Is there a special traffic school for  asperger' youth?

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Good Morning Mr. Hutten,  Your site is outstanding. I have already used it successfully to source advice for our MANY concerns.  I am blown away by your accurate grasp of the complexity of life of a family with an Asperger’s affected child.

My husband and I have two children.  Nate is 9 years old and completing 3rd grade today.  Norah is 6 and completing Kindergarten today.  Nate is our son affected by, and diagnosed with ASD - HFA; Norah, our daughter is neurotypical.

Nate was diagnosed with OCD in October of 2013.  To calm debilitating obsessive and compulsive symptoms that interfered with his ability to function daily without acute distress, he started taking Sertraline 2.0 mg of a 20 mg/ml concentration in February of 2014.  It helped tremendously.  In July of 2014, after gaining some weight and height, he plateaued on that dosage and it was increased to 2.5 ml of a 20mg/ml concentration.  Again, his agitations decreased and his ease returned.

Over the winter 2014 into 2015, as we now recognize as typical for Nate, he became agitated, especially during the span of Thanksgiving - Birthday - Christmas - New Years.  By Valentine’s Day he started to unravel.  By the first week of March, when he was expecting “Spring” but it snowed several times more the first week of March, he really was hitting rock bottom.  He was bothered by everything, everyone, and things far beyond anyone’s control (like snow, disruptions to the daily school schedule, and day-light savings time).  By March 16th, we were in the ER with a boy who seemed psychotic over my husband changing the password on his Kindle, so as to restrict his time on it.  Devastated by a feeling that we “didn’t trust him” he was hurting himself and others (his sister and my husband) reacting to “losing control.”  We were terrified about what was happening to our once happy, bright boy.  His mental health was spiraling into a pit! of life-threatening misery and unhappiness.

We were able to learn from him some previously unrevealed sources of personal disappointment.  As his classmates were now departing from the routine of winter-time indoor recess, friends no longer wanted to play Legos indoors.  He was uncomfortable playing athletic games, outside in the school yard. He felt abandoned.  He took one classmate’s comment that “Legos are lame” to mean that HE was lame.  It was an obsessive statement he cried out during violent tantrums.  “I’m LAME,  No one likes playing with me. I just can’t do it anymore.”  His plummet into sadness was precipitated by a perfect storm of seasonal change and shifts in social engagement.

After a 10-day partial hospitalization program, the psychiatrists there said, “Did anyone ever suggest to you that he might have Asperger’s?”  For a brief moment, it was a frightening thought.  But as quickly as it frightened us, it came as a huge relief.  It made ALL the sense in the world!  We now viewed Nate without the fear that he was plummeting into a debilitating mental illness.  We viewed it as a condition with a rather decent long-term prognosis.  On 4/29/15, during an evaluation by a separate follow-up agency his diagnosis went from R/O ASD to mild ASD (and still OCD, but understanding that this was a symptom related to ASD).  (BTW an increase of Sertraline 3/23/15 to 3.5 ml of 20 mg/ml, yielded no further relief, he’s (we’ve!) been in an agitated state now for months - we’re waiting for a real psychiatrist (no longer his general practitioner)to evaluate him and guide us to our next option, as/if appropriate).

Nate had been seeing a therapist (all of 2014-2015) who was trying to treat him for OCD.  Her cognitive behavioral therapy was just not taking because it was not the right diagnosis.  Sometimes he was able to catch himself, but if he was falling fast into a tantrum, he could not control himself.  He was able to tell us after every episode that he “could not help what he was doing, it was out of his control.”  He was right.  We believed him.

Getting help for him now, with this diagnosis, has been a challenging process, but we are wading through it as slowly as it happens.  Despite our location near Philadelphia, PA and Princeton, NJ, it had NOT been easy to find a practice currently accepting new patients for BOTH child psychiatry and psychology that take Aetna.  We have been waiting for our appointments since discharge which was 4/7.  They are coming up soon, 6/24 and 6/29.  It was a long time to be TREADING WATER, untreated for a condition that makes us feel like we are drowning in stress everyday as we cope with his unintentional, but ever present difficulty with a need to be in control.

So that is the brief background.  We have read a lot and are working very hard to keep everyone in the family afloat.  NOW!  Getting to my question.  As we build our support system, the MOST unforeseeable challenging part of acclimating and adapting to this diagnosis has been getting our parents on board.  They don’t “get it.”

Ironically, I have an adult sister who is mentally retarded.  My parents (whole family) have been her champions throughout her life (she is 40).  They should know what it is like to have a child with special needs.  My mother will say things to me about Nate like, “he’s just a typical 9 year old boy, you forget what it’s like to be 9.”  When I told her the diagnosis, my mother, once a teacher, said, “Really, I just don’t see it.”  I thought I was going to have a stroke. I told her that was the most awfully unsupportive thing she could have possibly said to me.  I told her it was as ignorant as someone telling her that they just couldn’t believe that my sister was MR.

Nate is brilliant in school (a relief).  He is fixated on Star Wars, NASA, and Legos, and a toddler it was trains and “waterways.”  He has an excruciating need to be in control of everything.  He feels better in control if he counters everything my husband and I say, do, and ask, with his preference of how we should do things.  We are lovely, stable people.  We are feeling not so lovely nor stable anymore!   He rejects the meals I cook, he resists leaving the house for plans, he is downright MEAN to us and especially to his sister (I know he envies her ease).  (SHe is so KIND and loving to him despite his abuse, it would make you cry to see her compassion and love for him nonetheless.) He is ruled by the id of his personality.  We call it, “Nate’s Way or No Way.”  He is difficult.  Deep down in him is a loving beautiful boy.  “He” (beautiful, loving boy) used to be with us far more than he is today. We’ve all had enough of being bullied !by him, but there’s no relief from him.  His social skills are such that WE never considered Asperger’s because he CAN function well in public.  He is a nightmare and crashes at home, however.  He lives a double life.  One of fronting outward appearances, and one of a struggling soul.  We were relieved about the diagnosis because for a long time we felt his defiance was PERSONAL and INTENTIONAL.  We have relieved ourselves from believing he is doing any of this with an ill will.  We know he cannot help it and we are trying hard to create an environment in which he does not have to feel he has to be SO TOUGH on us, ALL THE TIME.

My husband’s parents have an undiagnosed 26 year old Asperger’s son living with them.  He is the youngest of three sons.  He works nights, is quite introverted but a peaceful, gentle giant of a guy.  He is overweight, sheltered, and PLUGGED in to a computer quite a lot.  He does have a small circle of friends.  At a young age he became an overnight-game playing night owl.  He nearly did not graduate from high school.  My in-laws have never, ever acknowledged his condition.  Believe me, he’s never leaving home.  With that said, they’re not “getting” that their grandson Nate has been diagnosed with Asperger’s.  We stopped letting him go there for afternoon visits or over-night visits because they immediately cave in to HIS wishes (demands)and ignoring OUR requested restrictions.  We come back from an afternoon of rest and find Nate “happy” plugged into a Wii or on the desktop computer, or with a smartphone in hand.  Nate gets deeply LOST!
  when on a computer for too long.  It takes us DAYS to extract him from an overwhelming desire to believe that he can only be calm and content if he is playing Minecraft or watching Star Wars youTube videos.  We limit screen time because it literally gives him an emotional hang-over.  We learned it the hard way, it takes a TON of energy to say NO all the time.  We know what is best for him.

My husband and I need a break.  We feel constrained because neither set of our parents (Nate’s grandparents)”get it.”  They ask us all the time to take the kids for us but they send them back ruined.  This is not a perception, this is a FACT.  They think we have too many rules and that’s why Nate is frustrated.  They think letting him stay up late and eat fried chicken and chocolate is allowing him to enjoy himself. They are literally reckless with him.    We’re SPENT!!  So we end up coming home with a HOT MESS that lasts for DAYS. They “Aw” with pity sounds when we tell them he’s tantruming. They should be “Aw’ing” in pity for us! It’s like having to detox a drug addict, so we have found that it is not worth it to send him out so we can have some PEACE for ourselves.  We know what keeps him steady and mentally healthy.  They think we’re the control freaks.

We need a break.  We need respite from our 18+ months of being beaten down by Nate’s opposition to us.  We can’t change Nate.  We can cope with his condition, and even WE are unable to do it very well.

So here I am.  On the cusp of the last hours of the school year - a daily routine that I know Nate loves, and will be desperately missing.  I WANT our otherwise smart and loving parents to understand the situation better.  We WANT them to stop rejecting the notion that we’ve had our child diagnosed with Asperger’s so that we can explain what they think is “typical 9 year old stuff.”  Tantruming over a Kindle password, in which you try strangling yourself, while screaming that you would rather die than not have access to Minecraft, or beating your father in the chest for one hour with your fists and laugh wne your father breaks down and cried because he thinks he is losing you to mental illness, OR throw an iceball at your sister’s face (cutting her up) because you are so jealous of her ease playing with neighbor kid and the only way to show whose in control is by humiliating her in front of friends iS NOT normal behavior.  They are desperate cried for help.

So kind sir, what do you recommend when a child’s parents desperately need the support from their family, and after initial tries fail, do we do, to get them, to “get it.”  Or, like our child, do we just give up that they’re going to change.

You are welcome to point me toward anything you have already written on the topic.  I’m not seeking a lengthy personal answer, just your usual list of what can work and are methods worth trying.

We’re trying to build a support network strong enough to make slightly easier for us.  Our love (we are high school sweethearts, together for 26 years, married for 16) is STRONG.  We know this diagnosis can be tough on our bond.  We are desperate to build our support network so we (including Norah) can occasionally breathe.

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Hi. I would like to hear your thoughts on a few points that I would like to make. First, I don't know that we have to accept Asperger's in our own lives or in the lives of others. You, like many others, looking into this condition have attested to the fact that people with Asperger's lack empathy. Empathy is a "must characteristic" and one that God Himself intended for us all to have. I don't know if you are a Christian, but we are almost commanded to be empathetic towards one another, bearing each other's burdens. This is a characteristic that has been lost with many people, whether the person has Asperger's or not. But to see that a lack of empathy is a common thread in most individuals who have Asperger's is troubling to me, and I honestly don't know how a relationship, particularly a marriage can survive a lack of connectedness and empathy. I definitely do not advocate divorce, but save a miracle of God, how can you and a spouse with Asperger's or both spouses with Asperger's make a marriage better without empathy. I have often heard, and believe this to be true for all marriages, the closer you get to Christ in your relationship with Him, the better your marriage. Both partners have to be willing to grow in Christ, otherwise, there vices, mental illness, pride, and the like will get the best of them. I believe that if you have a spouse with Aspergers who refuses to ever get better, you can atleast have a relationship with Christ, and be loving to the spouse, despite feelings of hurt and pain. You may not ever have the marriage you want or even a functional marriage for many, but really giving your best to a marriage is between you and God, and if you give your best, at least God will be happy with you for that.

Your thoughts?
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Thank you Mr. Hutten.​  I'm attending my first family support group tonight.  The topic is "summer transition" - when you lose the everyday routine of school, and your child is out of sorts because they don't look at unstructured days as fun, but rather overwhelming.  As a parent, I can allow quiet computer-time, Lego time, television time, but it's when he rejects eating lunch at at noon (1,2, or still 3), refuses to go to the pool or the creek at the farm ONLY because it's what his sister would love to do, or take a ride to grandmom and grandpop's, that undercuts our family's enjoyment of summer days.  He wants everything to be his choice all day.  Moving forward despite his resistance is exhausting, but necessary for balance in the family.  More likely than not, it's just the transition he has a hard time getting through.  Once he gets to the pool, he loves it.  Once he gets to grandparent's house, he loves it.  Then the next struggle, is the subsequent transition, when it's time to go home.   

As I mentioned, Nate is actually pretty good when we're out.  That's partly why our family doesn't "get it."  They see nothing wrong with him, which is why they treat him like an ordinary grandkid - namely by spoiling him and letting him be the captain of the ship when he's visiting.  But he does in fact come home spoiled.  Angry, tantruming, demanding, and wanting everything only his way at home, and cursing us for our limitations.  It's the sensory overstimulation.  They get the HIGH.  We get the LOW.

One time, while babysitting, my mom allowed Nate to "just enjoy being a boy" by digging a hole smack in the middle of our backyard, filling it with water from a hose, and making a thick mud puddle.  (There were plenty of other places in the yard he was allowed to do this, not in the middle of the lawn though.)  The next day, getting off the school bus, Nate invited every kid over in the neighborhood to dig holes in our yard.  They showed up and brought shovels and were making the hole larger and making more mud.  It was a frenzy of uninhibited destruction.  When I said the kids could play at our house, and make puddles on the side of the house, but they were just not allowed to have free range to destroy our lawn with a hugely growing mud hole, Nate screamed at me for ruining his fun and started slinging handfuls of mud at me and our house in front of all the boys.  I said it was time for everyone to leave, that it was sadly out of control.  He kicked the door.  He flipped out.  I called my mother and invited her back to the house to see with her own eyes and OWN the consequences of the behavior and mindset she allowed the day before.  I told her that she did not understand how he can go overboard, and how badly it blew out of proportion, and how abusive he was being toward me.  I told her the effects are always latent, so if she loves me, and does not want me (and my husband) to be abused the next day, she has to think more carefully about how far she lets him go.  I told her it's like when a shark takes your bait and swims off with your hook and line.  I told her she left me to reel in a boy who took, far, far off from the casting point.

Thanks for listening. :)

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Mark,
Been loving your newsletters. My son exhibits many Asperger's traits but has not been officially diagnosed, though the closest he's come is a doctor who said he might be right on the cusp of Asperger's.
In any case, he's 15 and has had a rough year of school. He had been failing 3 of his classes for a majority of the year, and my wife and I discussed with him that we'd have to do summer school to keep his grade level moving forward.
The agreement we had reached was, that if he could raise his grades, we would not make him do summer school.
The difficulty is that we've paid for summer school in advance because his grades were still suffering, but at the last (literally) week, he pulled his grades up.
Here is the issue. Per the agreement, we should not make him go to summer school, but per summer school, pulling him out would mean a loss of money paid. Secondly, one of the classes he barely passed is one that is a foundation course for next year, and we are not certain he has retained enough knowledge to move forward, despite the grade.
Do you have any advice on how to proceed?
Should we cut the financial loss and stick to the agreement?
Should we make him attend, based on the need for knowledge foundations, despite the agreement?
Any advice would be wonderful.

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My name is Drew Lytle and I am a man on the autism spectrum.  I am also a Media student at the Evergreen State College and for my final project of my program this year, I created a piece on Autism.  My goal was to show autism in a way that neurotypicals could see and hopefully finally get an understanding as to why these things happen with us.  I was wondering if you guys could promote it as it was made to get out and show people.

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The feelings of empathy won't do on their own. The putting the empathy into action is really what constitutes empathy. I think empathy can also be learned, because God knows we all have different personalities, and some have more difficulty than others in expressing it; nonetheless, we still have to show it whether we have the feelings or not.

If most people with autism/Asperger's have this problem with demonstrating empathy, as you have noted in your experiences, then they need to go to classes or programs where they can learn how to show it...just like everyone else who has a problem in a certain area whether there are disabilities or not. 

I think there is more than meets the eye with autism/Asperger's, but not learning empathy will negatively impact their career outcomes, no matter how brilliant, if they do not learn to demonstrate empathy. Some people can get by without showing empathy, if they have great communication skills, because of the world we live in..that puts value on wrong thing, but having a lack of demonstrated empathy coupled with poor communication skills is a perfect storm for disaster. What are all these people with autism and Aspergers going to do in terms of having families, and having decent careers? In the education system, for example, people with ASD have IEP's and they get lots of support in Sped, but once they graduate even from college, what next? We haven't really provided intensive instruction in the area of empathy and communication skills that will make them passable in society. Even more concerning is the fact that people with ASD often make decisions on their feelings and what they want or don't want to do. Maturity is key with all individuals, and learning that feelings shouldn't be the basis for actions and right decisions. 

I wanted to share with you, but wanted to get your piece on the empathy problem, which I can see makes sense. Thanks for sharing about the demonstrated empathy problem, but the focus should be in how we can help individuals with ASD demonstrate empathy. We live in a society of excuses. It seems like there used to be satisfaction in overcoming the certain traits that weren't working in individuals, rather than reducing it to "its part of their condition" and we have to accept it. Who says? Aren't we supposed to put others before ourselves? I understand that people with profound disabilities are not necessarily able to make changes, but many people with Asperger's and High Functioning Autism have an understanding of what empathy is, and what the right decision should be. 

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What are your thoughts on EEG/Neurofeedback?  This is something we are considering. 

 Our son refuses to leave the house and go to any appointments or leave the house at all.  He does get angry and forces us to leave the house at times.  He refuses to take any medication.
We do not argue with him, we just leave the situation until he calms down.  Otherwise he can get violent.  Is this the correct way to handle on our part? 

He  is 13 years old, loves legos, bionicles, video games and spending time at the creek.

We do live in a very remote area where the best help for Aspergers is 2 hours away.  We have tried unsuccessfully to get him to appointments where the speciality is Aspergers,  We just want to find the best help for our son.
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Hi Mark,
I aced your quiz. https://www.youtube.com/watch?v=9j2Z7yGpMkY
The only one I didn't say "yes" to was the one about jokes. Usually I'm the first person to get jokes, or I'm the one making them up and then other people don't get them. But if people are 'joking with me' then I don't get it. Fortunately I am around nice people (for the most part) and they will tell me if they were joking. Then I glare at them and they laugh.
I totally wanted to count how many questions you had presented but the music was annoying (ha ha that that was a question) and the words spinning also bugged me so I couldn't concentrate. And I couldn't turn the music down because it might stop and someone might start talking and I might miss something. But the words spinning overruled that anyway.
Five months after my SPD diagnosis and I "still" haven't pursued an AS diagnosis but it's getting harder and harder not to. Do you have any advice on bringing up sensory issues and AS issues to my parents? I haven't told them yet...
I mean they "know" lots of it because they know me, but they don't know that my weirdness is "called" something. A complicating factor is that my dad and I are a LOT alike in this respect and he is also bright and would catch on and see it in himself if I told him about me. And it's caused me a lot of stress and I don't want to put that on him. But I know it would help my parents' relationship with each other and with me. My mom is also left out of almost all our jokes. It's their anniversary and my birthday soon so I didn't want to bring it up before then since they're taking a trip and I didn't want to ruin it by telling them beforehand. But when my mom asked me last week what I want for my birthday...I wanted to say "an autism diagnosis" but instead I said, "Strawberry pie." 🙈
Mary

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I have read a little about it on your website and wanted to ask you
if you also deal with issues with " young adults" , we are having issues with my 20 yr old daughter and I feel we need help. We want to improve our relationship with her and try as much as possible for her to avoid making the wrong decisions in her life.  My husband and I  have been to a therapist but did not feel comfortable nor confident that he could help us with our current situation. I realize your program is for pre-teens and teens on the most part , so I decided to ask .
Our toughest challenge today is limits... our daughter depends 100% on us , but has decided she wants to do what she wants and is not respecting our rules and limits .   We have talked to her numerous times, at times  it seems she is listening .. but ends up doing the opposite... , I think she is at a time in her life that she needs to move on, however, she is making poor decisions in her life 
  She depends 100% on us, we are paying for her studies , she is not working...and she wants to do whatever she wants...      
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I have a 6 year old that is having difficulty at school staying in his seat, following directions, and listening in general, even at home. He acts like he does not hear a word you say. He keeps pulling stars every day at school since he has started kindergarten. This is when we started having so much challenges with him. He did fine in Head-start and Pre-K.
Other challenges is he wants to argue all the time and feels that what he says is right even when he is not. He acts like he is the boss and does not have to listen to anyone. At times he will act like he is shooting you when you tell him no and he will even try and hit me or hit himself in the head, bite his 18 year old sister. The school I feel does not understand totally. He has no focus nor attention. 

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Dear Mark,
I've learned of your work through the Facebook group Adults with Aspergers.  I  had intended to send you the following request:
"I would like to quote (with full credit) a comment used in the Adults with Aspergers Facebook group. I have the author's permission, but would like yours also. I'm not trying to interlope, but think this group is incredibly wonderful for adults on the spectrum." 
NOW that I've Googled you and know more about your incredible wisdom and experience, I'd like to ask you if you would let me reprint one of your articles about Asperger's in our quarterly newsletter, The MAAP,  and then put in a nice bio and contact information for those who would like to be coached by you.  I am truly now an admirer of your work.  Please let me know your thoughts.
Sincerely,
Susan

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Good afternoon Mr. Mark Hutten,

My name is Ana Silva and I am mom to a 14-year-old young man with Asperger’s Syndrome, who recently passed away.

I am Portuguese, having been raised in South Africa. I relocated to Portugal nearly 14 years ago and my kids have grown up here. My son’s death sparked a reasonable community response here in my area, as Asperger’s Syndrome is still largely unrecognized, ill-understood and mostly ignored, sadly. However, much work is being done by various entities to spark a significant change. Associations and Institutions are sprouting up nationwide and more and more is being shared about Autism and, specifically, Asperger’s.

I am fully aware that a huge reason for my son’s story having ended in tragedy was ignorance. I realize now that had I had the notion to ask questions I wasn’t even aware could and should have been asked, things might just have turned out differently. After he passed, I decided to make a pledge. That in whatever minute way I could, I would try to make a difference for others, so that no other mother should have to experience what it is to lose a child to society’s shortcomings. This is my way of honoring my son’s memory. I want to make sure that parents out there know exactly what to do in what situations, what to look for, which questions to ask of whom, when and how. In short, a lot of the things I wasn’t even aware I should have done myself, because nobody told me. Nobody showed me and I found out on my own too late.

So I set up a Facebook support group for parents and people with Asperger’s. It’s still in its infancy and we’re just shy of 100 members after a month of being in existence. What this group has taught me in such a short amount of time is that there is an enormous hunger for information. Practical “how-to’s”, tangible strategies for parents to use at home – a veritable “Manual for Asperger’s Parents”, if you will. I’ve been subscribed to your blog, newsletter, and more recently to your Facebook page for a few years now – when I was researching information and looking for help on how to deal with my son, and without meaning to sound patronizing, I have to admit that I am hard-pressed to find more useful and practical information and help for day-to-day situations as I have found on your blog. This has helped me immensely over the years. Moreso because nothing remotely similar to this exists in Portugal. There are no guides, nobody to guide you on how to act in this or other situation. Mostly, parents here get their information like I did. Online. In English, as that’s where the bulk of it can be found.

I would like to be able to share some of this information with the people in my country. However, there is still somewhat of a language barrier. It’s true that there are many who are able to understand English well enough for me to simply click the “share link” button to the group’s wall and that is that, but the truth is that there are many that would benefit so much more if this information could be presented to them in their mother tongue, Portuguese.
It is with this in mind that I am writing to you. To ask you for permission to translate articles in your blog into Portuguese, so that I may share them to the Group’s wall, along with all the original links and due credit, of course. The only thing I endeavor to achieve by this, and indeed the only benefit I would get, is to be able to get the message on how to help our Aspies, as clearly as possible, so that as many as possible may benefit.

Thank you for taking the time to read and ponder this possibility and look forward to your reply soon.

Many thanks and kindest regards,
Ana
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Hi Mark,

I found you and your website via the internet when searching for support for my son who is 12 with high functioning Asperger's here in the UK.

He has recently started secondary school (high school equivalent in the USA?) and has nearly completed his first year. It is a mainstream school, but I am appalled by the terrible support and incident's that have occurred throughout this last year.

One of the things that has come up for me is that my son needs 'social coaching' - that's the best way I can describe it. I wondered if your online support system may help me initially here to get through to him, and also to find things out from him because he tells me absolutely nothing about what goes on at school at all and I'm relying on others to tell me!

So firstly, let me know if you think you might be able to help and secondly, please let me know what your fee system is if you can.

I look forward to hearing from you.

Kind Regards,

Amelia

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Hello,
My name is Teresa, and I live in Chesapeake, VA. I have a son, who is  21, and has Aspergers. I'm trying to "help" him become self independent, but I can't find affordable and/or appropriate housing for him. He's not working...he just stays on his phone or the computer all day...has also has the worst back talk. This started after a 6 month stay at his Dad's home in Alabama.
This is causing friction between me and my husband because...well...he is a 21 year old sitting around doing nothing.
Please, do you know how I can get this son of mine out on his own?

Teresa


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Hi Mark,

According to my own research, I think my hubby is on the spectrum. It runs in his family and he has many of the characteristics. I studied it about two years ago and even told him, carefully, what I thought. He spoke with several people who told him that "of course he doesn't have aspergers!". So, feeling like an idiot, I let it go.

Well....I am feeling desperate now. Our relational patterns have not changed. We have been to so many counselors. Not one of them has identified this issue, so I am so gun shy now, and don't really want to go to any more counseling, but I also don't know how to get through this and hold on to my marriage. I feel exasperated.

Please let me know what you think I should do. My hubby is still very resistant to acknowledging that he might be struggling with this....and I don't know where to turn.

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Dear Mark,
I just wanted to thank you for your email and to say how useful I found your magazine. My daughter is 15 and was diagnosed with ASD in March. She has been self harming for about 15 months and your article is the first time I’ve found any specific reference to cutting oneself with a razor as something commonly done by Autistic people. It’s the thing that upsets and scares me the most and the thing that’s hardest to come to terms with and to deal with and yet the silence on the subject is deafening. I find that getting advice on how to live in this permanent state of fear and worry about what she’s going to do next is nigh on impossible. There are books and articles on many aspects of ASD, but if self injurious behaviour is mentioned it’s about head banging or slapping etc. I’ve also found it impossible to find any kind of support group or way of meeting up with other parents in a similar position. I was even told by one professional that a parent of another child who self harms may not want to talk about it because it’s too upsetting. That’s the whole point, it is very upsetting, but only another parent who has gone through it can truly understand the strain it brings on the whole family.
If you can give me any helpful information or advice about any of the above I’d love to hear it. Many thanks.
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Are you familiar with the Brain Balance Program or the Brain Highways?  What are your thoughts on them?  Our son was diagnosed late (right before jr. high), and he is still very behind hormonally…he will be 20 next week and we have never been able to get him a lot of helps (mostly for cost or time consuming)…he is not working or anything right now, so I was thinking this may be a good time, but I have no direction on what to do for him as far as a program, etc.  Any advice would be great…thanks!

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am e-mailing you because I am at my wits end.  My son iOT.s 18, now I have absolutely no authority whatsoever.  My son's name is Schuyler, every since he was a little boy I have known he has this.  I took him to many different doctors, finally when I lived in Jacksonville, Florida I thought my prayers had been answered  Dr.Paul, his psychiatrist agreed and was sending him to be tested.

Unfortunately, that didn't happen!  He was ten,  Judge Emke in Johnson county gave custody to his drunken father, even after she had allowed me to move to Florida with him.  He took our son to a psychologist, who tried to brain wash him into wanting to live with his father never happened.  Schuyler always cried no I want my mom.  There is so much more I could tell you but not enough time.

Schuyler cried so much, from the day he had to go live with his father until the day I returned.  I uprooted my other two children, quit my excellent job at Mayo Clinic, to move back to Indiana, which has nothing but bad memories for myself and my children.  My ex still had custody and still cried for me, but at least he got to see me.  To make the story short, when he was 15, I picked him up for the summer, when we got home, he told me he was never going back!  He called his dad, told him he hated him and he ruined his life.  He was never coming back and never wanted to see him again.

When school started Schuyler was a Sophomore, had an IEP already, since third grade, had been to speech therapy and  all done because I fought for my son to be like everyone else.    When it came to home work, a real battle, melt downs every night, so his teachers worked on that with him every morning.  I worked at 4 am, so I would be off before school got out and could always be updated on Schuyler.  This all happened in third grade before his father got custody.

Once in high school, he had many, many melt downs, which have included punching holes in the walls, shattering the oven door, when he couldn't feel his tongue after having wisdom teeth pulled, he kicked my windshield and shattered it, screaming all the way hme, another time he got scared because he thought were lost, grabbed the steering wheel causing to hit a pole. This was at age 18!  He screamed for the whole way home.

Schuyler graduated May 30th, but only because of the fact that he has Asperger's and Post Concussion Syndrome.  He had a job at Burlington and everyone liked him and he liked his job.  Until his good for nothing cousin that he for some reason, looks up to, told him they were going to fire him.  So his cousin took him to Burlington and told him to just take his badge and put it on his managers desk said nothing and walked out.

I have not seen my son since two days after his graduation.  Schuyler has been with his no good cousin, does not have any of his meds., he will wear dirty clothes if it is something he wants to wear, he will forget to brush his teeth unless someone reminds him.  He has not seen his psychiatrist since April.  We had a Voc Rehab appointment, he didn't come to that, because my "nephews" won't bring him.

The appointment was about going ready for college.  Schuyler is a Brilliant writer and Poet.  He is also Excellent in sports.   The cousin, yeah, a college drop out after 3 months, he has a narcissistic personality.

I go many, many nights without sleep.  Mentally Schuyler is not 18 and he will not accept that he has Asperger's, just like most of the other members of my family who have never really been around him.

After all of this, my intent is to file for legal guardianship of my son.  He doesn't even have any friends, just two cousins who take his money he works hard for!  Please guide me on what I should do?
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Do you have a good diagnostic tool that may help the Asperger's partner to accept that there is even a problem? I have "diagnosed" my husband, but would appreciate some backing. I do have a Master's in Psychology, but am not an expert in Asperger's Syndrome. I can read the DSM and I can read articles about AS and by checking off symptoms know, but I want something that may help my husband realize there is a problem. He remains unconvinced that there is any problem in our relationship, or that the problem is not just me bitching....lol. We had a "discussion" the other day about the way in which he talks to me. I often say he just talks mean or nasty and it is unnecessary. The discussion (well... the "me talking to a blank stare") led me to ask him if he even hears how he talks. After pressing, I finally got an answer, he says he does not see a problem. I about walked out the door. After years of complaining to him, pointing it out, everything but recording it and playing it back, he just thinks I am making it up... that something is wrong with me!! I am seriously at my wits end. I do not have a clue of how to get through to him anymore, and I feel lonely, frustrated, and exhausted constantly. 

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So if a 15-16 year old young person with Asperger's wants to drink and date someone their parents deems to old or to young they are bad people or at least naughty as far as your stupid book is concerned but if a so called "NT" does this its normal behaviour...

I often wonder sometimes though if I actually have asp and not some related autistic spectrum disorder because other than sometimes going on a lot about one topic or another and not realizing folk are being bored a little by it. I dont have a lot of your so called typical things. I absolutely obeyed my dads command on who to date despite the fact I hated what was a stupid rule, I wasnt going to have sex with the girl and all my class mates where dating girls in the year below whom where also not having sex no one was doing any thing exploitive, the ones who where, even where no sex was involved stood out like a sore thumb, its a minority of teens when the age gap is slight who are exploitive and the science says boys are emotionally and relatively physically more immature than girls at the same age so nature itself tends to produce the boy dating the younger girl by a year  or two, this is fine at 17-15 but clearly not at 14-12.  

I regret I never had the chance because of dating not because I was bad with girls like a lot of people with aspergers but because my dad thought his opinions where better than other peoples and that his morality was absolute when in fact he was one of very few parents in my country as a % who think such an age gap was a problem. On top of that in a lot of ways I was more innocent and imature than my peers because of a mixture of asp and a sort of purity driven upbrininging which made it even more non offensive for me to do what 60% plus of my year where doing by dating in a casual, teenage like way girls in the year below or two, and which continues to this day in schools although decreased ever so slightly by the sick things men in their 40s did to young children and early teens, not non sexual relationships between similarly aged teens which was even more normal when I was growing up around 10 years ago. 

Now its true I am bad with girls, sort of. I can be their friend etc and they may even fancy me but they never want me or that last step partially because of social conditioning against small men, even the handsome ones and partially cause of asp. However having a lot of female and male friends and acquaintances who just never quite become lovers or best mates respectively is not that bad a deal really. 

I never really had temper tantrums as a teen I mean I had one or two where I banged stuff but I had really oppressive, restrictive and constrictive dad. I believe in a lot of ways my dad has asp too however unlike me he believe his opinion is the be all and end all of everything and he does not have empathy for others opinions however he is able to do much more practical things than I was (probably having everything done for me was at least part of this) and does not go on as much as I do, however he is ver much more definite about his opinions on things to the point if any one disagrees with him he will out right call them stupid, immoral or incorrect, which is very definite language and manner and aggressive body language for things which are merely subjective opinions. I on the other hand have the social empathy much more than he does and the opinion of others does matter to me even if I dismiss it out of hand internally, I very rarely use such definitive language on subjective things and I realize unlike a lot of people that not only is every thing not black and white, but that everything isn't a shade of grey: Some things are always black and white, others are shades of grey and others yet are black and white in some circumstances and are shades of grey in others. 

Unfortunately human beings have this insane need to categorize things and most people fall into either ever thing is black and white or everything is a shade of grey camp and as my dad is the former and I am neither camp we do not get on, the shade of grey camp whilst equally "incorrect" as a philosophy are never the less much easier to get on with as they tend to be, sometimes, more open about changing not only beliefs and opinions but also their core philosophy to something that more closely matches the complexity of the world. The sad fact of human need for categorization is that in order to observe such a tendency in humans one has to immediately fall victim to that same tendency at least to some extent even if their is great veracity in what one says.  Finally you may label me as a crazy liberal hippie or some such crap but when american right wingers like yourself have crazy laws allowing teens to own guns at 14 and drive at 15 but sex is of the menu to 18 and one cant drink till 21 you have the wrong thing "liberalized".... drinking is a great thing and in moderation any over 15 can do it, I did it, it was the one thing where I said no to my parents I am not living by fake, artificial rules. As for sex 16-17 is probably a good age of consent any thing higher is removing agency from those who have the capacity to exercise it and any thing lower is removing protection from those that do not have the agency to informly exercise it.

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Surviving Summer Vacation: Strategies for Parents of Children on the Autism Spectrum

It’s summer vacation time. Almost 3 months with your “special needs” child at home. What are you going to do with him? I know exactly what you’re thinking: it’s not that you don’t love him, or even that you don’t want him home …it’s just that everything changes when he is around “all day.” 
 
Sleep schedules change, there’s more fussing and fighting, more dirty clothes, more dishes, more stuff to pick up off the floor – and of course, there’s more “I’m BORED!”

We’ve compiled a series of articles and videos below that will help parents of children on the autism spectrum to not only survive the summer months – but to make them downright enjoyable. These suggestions take a tiny bit of time to implement initially, but they are so worth it! 

Surviving Summer Vacation: Strategies for Parents of Children on the Autism Spectrum---
  1. Aspergers Children and Summer Vacation: 25 Tips for Parents 
  2. Summer Activities for Aspergers Children  
  3. Surviving the Summer with Kids on the Autism Spectrum: Tips for Parents  
  4. Aspergers Summer Camps  
  5. Aspergers Summer Camps for Teens  
  6. Preparing for Summer School: How to Advise Your Aspergers Child's Teacher  
  7. How To Help Aspergers Children Get The Most Out Of Summer Vacation  
  8. Helping Your Aspie's Teacher To Understand Your Child  
  9. Going on Vacation: 20 Tips for Parents with Aspergers Children  
  10. Helping Your Aspergers Child Get Ready to Return to School  
  11. How to Avoid "Back-to-School" Meltdowns and Tantrums  
  12. Helping Aspergers Children Avoid The "Back To School Jitters"
  13. Dealing with the "Back-to-School" Blues: Tips for Parents of Asperger's Kids 
  
Here’s to a great summer!

Helping Asperger's and High-Functioning Autistic Children Cope with the Loss of a Parent

The main purpose of Memorial Day is for remembering the individuals who died while serving in our country's armed forces. Many children in the U.S. have lost a parent in recent times due to military conflict, and many of them also suffer with a developmental disorder, which complicates matters significantly. The focus of this post will be how to help these “special needs” children cope with grief...

When a family member dies, kids react differently than grown-ups. And, many children with Asperger’s (AS) and High-Functioning Autism (HFA) react differently than “typical” children (e.g., they may see death as temporary and reversible, a belief reinforced by cartoon characters who die and come to life again). Adding to the youngster's shock and confusion at the death of a mother or father during time of war is the unavailability of other family members who may be so shaken by grief that they are unable to cope with the normal responsibility of tending to their “special needs” child.

The surviving parent should be aware of normal childhood responses to a death in the family, as well as signs when a youngster is having difficulty coping with grief. Kids on the autism spectrum may express their grief and feelings differently, but their grief is still just as powerful. 
 

Below are 30 crucial tips for helping your AS or HFA child to cope with the loss of a parent (or other family members):

1. A youngster who is frightened about attending a Memorial Day service or visiting the gravesite should not be forced to go. But, honoring or remembering the deceased parent in some way (e.g., telling a story, saying a prayer, reviewing photographs, making a scrapbook, lighting a candle, etc.) may be helpful. “Special needs” kids should be allowed to express feelings about their loss and grief in their own unique way – no matter how odd it may seem to others.

2. After a parent dies, some kids will act younger than they are. The youngster may temporarily become more babyish (e.g., demanding attention, talking baby talk, having bowl-movements in places other than the toilet, etc.). This is normal and usually temporary.

3. Avoid too much change at this confusing and distressing time.



4. Balance how much information is given regarding the parent’s death. Too much or too little information may make it difficult for the child to voice concerns or ask the right questions. 

5. Be advised that the child’s anger is often directed at the surviving parent who shared the news of the death. Anger may also be apparent when activities that were previously provided by the deceased parent are no longer available.

6. Be open and honest. Use appropriate words such as “dead” and “death,” and avoid euphemisms.

7. Be patient, because the same questions may be asked over and over again.

8. Be prepared for the possibility that the grieving process of children on the autism spectrum may be profoundly affected by their disorder.

9. Continue routines, keep decision-making to a minimum, and encourage connections with friends, classmates, and other family members.

10. Discuss with your youngster that, with the grieving process, it is common to get headaches, feel numb, ask many questions, worry, blame oneself, etc.  Also, remind your child that he or she needs social support and help, someone to talk to and a place to remember. 
 

11. Don’t exclude your youngster from helpful rituals of death, which will help him or her understand someone important in his or her life has died.  Kids on the autism spectrum need more concrete rituals, explicit directions, and simplified activities.

12. During the weeks following the death, it is normal for some kids to persist in the belief that their parent is still alive. But, long-term denial of the death can be emotionally unhealthy and can later lead to severe behavioral problems.

13. Each child with AS or HFA will react individually to bereavement, so the approach to support needs to be as unique as the child.

14. Encourage the grieving youngster to wear an article of clothing that may be a linking or comfort object to the parent who is gone. Having a pillow or blanket made from the deceased parent’s clothes may help too.

15. Encourage your youngster to keep a “feelings diary” to help deal with all of his or her emotions.

16. Help your child create a grief vocabulary (e.g., sorrow, sadness, heartache, etc.). Children who lack a grief vocabulary to talk about emotions tend to express their feelings through their behavior.

17. If possible, allow your youngster to say goodbye and see the body of the parent who died. Research shows that when kids see the body, they show less behavioral acting-out in the future.

18. Light a candle on special days (e.g., Christmas) and share memories.

19. Listen to the deceased parent’s favorite music.

20. Look together at photographs of the parent who has died and share memories.

21. Make a book about the parent who died.

22. Make a memory box, and allow your youngster to choose what memories go inside.
 

23. Once kids accept the death of a parent, they are likely to display feelings of sadness on-and-off over a long period of time (often at unexpected moments). The surviving parent should spend as much time as possible with the youngster, making it clear that he or she has permission to show emotions openly and freely.

24. Remember that some AS and HFA children won’t react to the parent’s death at first – or may react in a way that is different than you might expect.

25. Remember that most children on the autism spectrum tend to have a very limited number of close friends. Thus, experience of the death of a parent can feel like a catastrophic loss, and the idea of re-investing in other people is very difficult.

26. Remember that returning to school after a loss can be very stressful. Some kids worry about their surviving parent at home alone.

27. Some kids may believe they are the cause of their parent’s death. For example, one boy with Asperger’s believed his father was killed because he had once been angry at his father and wished he would die. Subsequent to the father being killed in battle, the son felt guilty and blamed himself because “the wish came true.”

28. The parent who has died was essential to the stability of your youngster's world, thus anger is a natural reaction. The anger may be revealed in a variety of ways (e.g., nightmares, aggressive play, bad temper, meltdowns, shutdowns, etc.). Often the youngster will show anger towards the surviving parent.

29. There is no way to generalize how each “special needs” youngster will experience loss through death, but such a loss can give rise to resistance to change, phobias, obsessions, lack of understanding and fears, which can be considered by others to be inappropriate reactions.  Kids on the autism spectrum depend on the security of familiarity. They often have difficulty finding words to express their feelings, which is why goodbye rituals are so important.

30. Try to anticipate your child’s reactions, listen and read cues, intervene, ask how he or she feels, talk about the deceased parent, and explain the normal grieving process. 

You will know when your “special needs” child is having serious problems with grief and loss because he or she will demonstrate a variety of behavioral symptoms that are very noticeable (e.g., withdrawal from friends, sharp drop in school performance, refusal to attend school, repeated statements of wanting to join his or her deceased parent “in heaven”, inability to sleep, loss of appetite, prolonged fear of being alone, excessively imitating the deceased parent, depression, loss of interest in daily activities and events, and acting much younger for an extended period).

If the signs listed above persist, professional help is needed. A qualified mental health professional can help your youngster accept the death of a parent – and can assist you in helping your youngster through the mourning process.

When should you definitely refer to a professional? When your child:
  • threatens or talks of suicide (this is particularly difficult because many kids on the autism spectrum also suffer with depression and may generally have thoughts of self-harm)
  • denies that anyone has died, or acts as if nothing happened
  • becomes withdrawn and socially isolated
  • becomes unusually and persistently aggressive or engages in anti-social behavior

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