18.9.13

COMMENTS & QUESTIONS [for September, 2013]


Hi mark, my 13 year old son aspergers. In the past and less so now he has felt extreme sensitivity to wearing certain clothes and shoes. He seems to be getting better with this. For the past 12 months though he seems to have a fixation on closing every door in the house. It either has to be wide open or fully closed. He cannot bear to think of it half closed and says this gives him pain in his head. This is driving my husband, my 9 year old daughter and I mad. He is up and down all day and night closing doors after us. My husband refuses to give in to his demands and it causes many arguments. I know this is genuinely upsetting my son but he said he cannot get out of doing it as it causes him pain. What can we do?


Dear Mark Hutten,


I am a Research Associate in Dr. Dennis Wall's lab at Harvard Medical School. We are months away from completing a mobile system for rapid detection of developmental delays and would like to discuss recruiting for our study through your community. With more community involvement, we will be able to finish work on an application that simplifies the process of detecting developmental delays. The study consists of uploading natural home videos and straightforward parent questionnaires. At this years International Meeting for Autism Research (IMFAR), Dr. Wall received the prestigious Slifka-Ritvo Innovation in Autism Research Award for this clinical research.

We are seeking caregivers of children 7 and younger with or without a diagnosis of a developmental delay. It will take only minutes to participate, but will help ensure families everywhere get the attention they need as early and often as they need it. We would love to discuss how we can collaborate and reach out to your community as it is robust, well-rounded, and filled with caregivers who want to help one another.

Also, we have a "supporting organizations" tab on our website and would love to help get more traffic to your site by posting your organization's name, logo, and website in this tab if we move forward with this collaboration. Please let me know your thoughts.

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My son has Aspergers and he has difficulty in making and keeping friends. Academically, he is very good  but I'm seeing some difficulty in maintaining the grades. He has trouble in comprehension and does good if given individual attention.  He does have a IEP but it is not helping him that much. Since he is capable of doing his work without assistance, he is not given any extra help. I strongly feel he is not getting correct motivation in school and i understand that one teacher cannot give individual attention to one kid is she/he has 29 more kids to take care. We decided to move to a new school district in hope that new place will have a new begining. And I do not want to make same mistakes  as I did in previous school.  Could you explain step by step process how he can get extra help from new school. I'm new to this and need some help. Appreciate your response.

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So a new school year has started and I've already received a call about
lack of participation, didn't hand in the first assignment, and sleeping
in class. This is 3 days into the school year!! He tells me he doesn't
care, wants to drop out, school is stupid etc. I'm currently working
with psychologists at the school to determine if he is ADD. I've had him
placed in inclusive classrooms but he has already gotten an E on a
participation assignment! He just turned 15 and is now repeating 9th
grade at an alternative school. Does not want to go back to his home
school. I just don't know how to handle another year of this. I punish,
reward, you name it. Nothing works. He doesn't care.

A friend of mine suggests taking everything away from him. Problem is
that I've done that before. Did no good. He still failed. He tells me
punishing him doesn't change how he is. He just has no interest so he
doesn't bother. I've tried rewarding with things he likes, but I've
never been given the chance to EVER reward him. He never gets far enough
to earn it.

I don't know where else to turn but to just let my kid become a loser
and fail. But why do I have to let someone like that live in my house
and be a leech off of me?? I've spent thousands on lawyers, therapy,
meds. Still nothing. He is draining the life out of me and I want him
gone to see what is so great out there outside of school. I'm tired of
providing a warm bed, hot shower, and a nice meal all for nothing. What
am I supposed to do for the next 3 years??

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Hey there. Thanks for adding me. My husband has Aspergers and I'm the Neurotypical wife. We just listened to your seminars and find it fits perfectly. Matt has never had anyone be able to put it into words like that and give him specific objectives. I've asked for a lot of the things you spoke on but it was conveyed differently through the seminars. Are you having any coming up or can we schedule a private counseling session or two with you? We are currently stationed in Jacksonville FL and I'm deployed right now but after the first of the year we could drive up.
We were at a very tough spot in our marriage. We just had our 1 yr anniversary last month and I've been gone for 3mo so it's been tough. Your book and seminars have been a saving grace. We appreciate them so much.

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I am a school counsellor, a young boy 10 years old, with suspected Aspergers, by his teacher, has recently been referred to me for counselling. My concern is how to engage him in the counselling process. He doesn’t understand why he needs to come to counselling, and any initial attempts at engaging him in any activity have been met with resistance. Do you have any tips?

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Hello Mr. Hutten,

I just stumbled across some of your workshop segments on YouTube regarding NT Spouses of Asperger's partners.  It is as if you wrote specifically about the dynamic of my husband and myself. 

I have been researching High Functioning Autism/Asperger's Syndrome for a few months and am relieved to have found the information.  My husband is "The Asperger's Loner" type and we've been through four marriage counselors.  The last counselor grew frustrated with us and said that therapy was useless unless my husband actually made an effort to do something...anything...towards participating. The therapist suggested I move on for my own sake as well as my children's. 

I've reached the end of my rope and am emotionally and physically spent after 31 years of this.  The pain expressed by my two sons, 11 and 16 years old, is really what made me decide that my husband and I should separate. I have them both seeing a family therapist who said it would be best to diffuse the tension in the house by having my husband leave.  The boys are sweet and caring, but frightened by their father's increasing detachment and over-involvement with his passion: film.  My husband is a film curator at a museum and works two film jobs and takes on freelance work to avoid coming home.

If there is stress of any sort or tension, he will dive back into work.  He works 7 days a week at his regular job plus weekend mornings at a second job. He also works 2-4 nights a week. His mom just died and he took a third job to avoid having to care for her.  I am the corporate admininstrative assistant/wife and do all financials, taxes, future-planning, child-raising, home and yard care, college visits with Junior, etc. He will work to earn $$, but cannot handle any other responsibilities involving contact at home.  I'm in the resentment phase even if he says he loves me (no sex for 9 years + no dialog + no dates + no help = none of my needs met = no relatable love).  I put my career aside to raise and protect my kids and his career/film passion has grown to the point of swallowing all of us whole.  Separation leaves me quite vulnerable financially, especially since he is in the not-for-profit world of museum curation.

I don't know where you live/work, but I'd love to get my husband connected to you online or in person or.... anything.  He probably won't pursue it if I drop the ball in his court, but I've been sending him the YouTube clips because I thought he might connect to the video images. I'm feeling like it's over for us, but I can't stand thinking of the world of hurt he's headed for while the rest of us run for cover.  He's a gentle giant, but he can suck the energy right out of our home the minute he walks in....

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HI, thank you so much for your email! My son is almost 14 and has Aspergers (among other issues) but we are largely dealing with severe anxiety/depression and anger these days!  He was recently hospitalized for 8 days in June (which was horrible) and we are now on a day to day basis as far as school is concerned. He likes school, but it's like all of a sudden, he just can't seem to handle anything. Is this normal? He currently takes Risperdol, Intuniv and Cymbalta and things are a bit better, but we still deal with this imaginary "switch" that seems to suddenly flip where he'll be perfectly fine and happy and then the next second he's stressed out, anxious, and angry! It's very hard to see my sweet boy become this other "person" with cuss words coming out of his mouth and mean, spiteful words...and then, the switch flips again and he's back to normal.  I feel like it's only my son that deals with this, so looking for any insight on ways to best help him.
Thank you!

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Dear Dr. Hutten,
I am the mother of a nine-year-old child. To Texas. The public education has not really worked out well and has not addressed his problems. He has had increased anxiety over the last year. We decided to move him out of the public education and found a small young private school that seems to be working well but doesn't seem to target his social skills problems. We are considering moving to Los Angeles Where if he found could talk to school however where little hesitant. We got good job offers for both my husband and I In LA. But it seems to be a big move for my family. What do you think? in your opinion do schools and more services make a difference for these children? 

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Hi Mark, I am having a hard time teaching my Asperger’s daughter (Amelia who is 11) basic personal responsibility.  Particularly, getting herself ready for school in the mornings.  We’ve tried visual aids (a chart with what she should be doing at what times), prompting, we have maintained the same schedule since she began pre-K at 5 years old (and even before that), reward charts if she does everything herself, removal of TV/computer time if she needs continual reminders, and up to letting her miss the bus and get dressed in the car on the way to school.  None of these things seem to make any difference, she gets distracted ridiculously easy.  We’ve gone so far as to remove all the books and toys in her room (reading instead of doing what she is supposed to be is a constant issue) to no avail, she simply finds something else to do.  It’s amazing what she can find to do. Needless to say, while it is better than it used to be, she still has issues with time management.  Is this something that is just going to take more time and prompting?  We are kind of at a loss.

In addition, there’s the homework thing.  She is on Adderall XR to help with her attention issues, as well as Risperdal for anxiety.  She has a hard time focusing during class and, so far this year (today is the 6th day of school), is already having a hard time using her class time to do her classwork.  This  ends up coming home as homework, in addition to the homework assigned for the day.  She had an aide in the classroom through 3rd grade (she is in 5th this year), last year became challenging when her workload increased about halfway through the year.  I know she gets very frustrated, and feels that she can’t handle all of this work that she is being given.  While I think that she should still complete the classwork as well as the homework  after school (because she didn’t use her time wisely during class), it also seems like it may be too much for her.  I’m pretty sure she feels so frustrated and has decided she can’t handle it and shuts down in school and doesn’t even try.  The work itself is not particularly difficult for her, she’s a smart kid.  She does have an IEP, and I have been communicating with her teacher to figure out how to reduce her workload so that it is manageable while still making her accountable for her work. I guess my question is….where exactly is the line between punishing her for her disability (especially the extreme lack of focus) and making her accountable?

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I first stumbled upon Mark Blakey’s “Asperger’s Test Site”, featuring Professor Simon Baron Cohen’s AQ Test, the first of August.  Since then, I’ve read up considerably on Asperger’s, and am completely convinced my 42-year-old gay partner is an Aspie.
I do substance abuse outreach work with inmates, parolees, and probationers through Alcoholics Anonymous Hospitals & Institutions Committee.  3 years ago, my partner wrote the local AA Central Office for a sponsor / outside support, and his letter was given to me.  We wrote back and forth, and then I started visiting him in prison every weekend.  We kind of connected from the first letter, but it wasn’t until he was released in March that I fully realized he was gay.  (He knew I am.)   I brought him home with me to my mom’s place, and then we got our own place, and have been in a relationship ever since. I’ve met his father once – a retired chemical engineer – whom I suspect may also have Asperger’s.  My partner, Chris, was the 5th of 6 children.  His mother died when he was an infant.  His dad later in life began taking Paxil for anxiety / depression.  I’ve heard horror stories from Chris about how his dad went through ballistic melt-downs frequently when he was a kid, and even beat him up so bad that he had to be placed in foster care for a year.  Chris was a Ritalin kid, and began smoking marijuana at 11, and acting out in school.  From there, there was a progression to hard drugs.  A steady parade of child psychologists, drug reahabs, mental institutions, more psych meds, and harder street drugs then led to trouble with law enforcement, stays at juvenile hall, jails and finally long stays in state prisons.
Over the 2-1/2 years I visited him in prison, I noticed that he was moody, sometimes withdrawn, introverted, uncomfortable in his dealing with others, and somewhat younger than his years in social maturity.  He did have trouble showing empathy, keeping eye contact, and staying out of depression / anxiety.  Pysch meds had never really worked on him.  He’d had trouble maintaining friendships and relationships.  You certainly know the pattern.
When I tried broaching the subject of Asperger’s with him and showed him the self-diagnostic test, his reaction was:  “You think I’m a retard!  I’ve always known I was different.  But there’s nothing wrong with me.  I looked at the self-diagnostic test and that website, and it was pure quackery!”
Somewhat down the road and he brought up Asperger’s again, asking me if it helped me to put a label on his situation, as if to categorize him.
He’s been incarcerated about 15 years out of his life.  He’s never really had much more than day labor, short duration jobs.  He’s been clean and sober about 3 years, starting just before I met him, which is good.  And he’s about ½ through his 1-year of supervision upon prison release from Probation.
Areas where I seek your advice
1.       In your book, you did suggest telling an adult about his apparent condition,  encouraging him to seek professional confirmation.  If he’s in initial denial, do you have suggestions of how to overcome that?  In Alcoholics / Narcotics Anonymous, the concept is about one alcoholic /addict (who knows from where he speaks) helping another.  Would it help having someone with Asperger’s from a support group, etc. broach the subject with him, possibly minimizing the perception of a “Normie” labeling him?  My objective is for him to gain understanding of himself, possibly see if there is some of this in his dad, and facilitate understanding, healing, and coping through techniques and training. 
2.       He sleeps with a body pillow of a Japanese anime cat character, which he talks to, plays with, and clings to.  I recognize that he doesn’t have to worry about abandonment, two-way communication issues, and acceptance.  He has stated that he has intimacy issues, and there has been no intimacy or overt displays of affection between us, but of course, I would like there to be.  I have no problem with the stuffed animals being part of the relationship; I would just like to be included.  This is something that apparently he has carried with him ever since he was a child, and even in prison, he had a “Linus” blanket. 
3.       We used to give each other a hug every time I saw him and departed on the prison yard, but now that we live together that’s stopped.  I have taken to asking him for a hug, then I’ve gotten them.  Like asking permission if I can touch him is a strategy to avoid his discomfort.  Any suggestions?
4.       Mark Blakey and Leslie Burbey have co-authored a book called “Emotional Master for Adults with Asperger’s”.  Are you familiar with it?  I just got your book today, so have yet to finish it. 
5.       There are a couple of iPhone apps I’ve come across – “Social Navigator” by Seven Minds Education, and “House Rules” by Jodi Picault – that may be exercises mainly designed for autistic kids.  Once I get Chris to open up to the likelihood that he has Asperger’s, and accept it, are there techniques / exercises you’d recommend to deal with avoiding getting triggered into melt-downs and anger, and getting out of it when it happens?  Also to get out of anxiety, OCD episodes, depression?
6.       Your book addresses hetero relationships, where the Normie is the wife.  Does that translate pretty well to gay relationships, too?  Do you have any specific lessons for gays?
Thank you so much in advance for your time!  I’m looking forward to studying the materials of yours I’ve just accessed today!

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My son has always been "difficult". From the time he started prek Ive always received phone calls at least two times a week about his behavior. When he was 10 his father committed suicide, at the age of 11 he lost his vision and was diagnosed with brain cancer. He has been through treatment and phycological testing. It was a nightmare getting him to receive treatment. He is negative and yet he could be such an inspiration to others if he had a positive outlook. His attitude is poor, hes angry, hes depressed and hes only gotten worse. He is now 17, will be 18 in March. He doesnt want to do anything that will help in getting him through this new life he was given. He only does what he wants to, he isnt concerned about the next years of his life. He assumes he will live with us forever. Todays phone call, his teacher said they had an outing last night at a horse show. He had homework and instead of doing it when they got back he went to bed early. This morning my son told the teacher "I didn't do my work because it cut into my personal time" I wanted to draw an make jewlery".
He always has that mindset of he can do what he wants and doesnt have to follow rules. Always has had, no form of dicipline has helped. We are clueless what to do. Drs have stated they have never seen anyone like him. Need some advice!

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Hi Mark, I have written to you before about your program.  It is so helpful.  When I find myself in the throws of an all out war with my 16 yo son, I reach for your ebook.  Your emails always seem to come at the most appropriate times, as well.  I even find your information and suggestions as well as those from other parents to be more helpful than the visits to his Social Worker. I plan on checking out the Online Support Services that I just read about.  I'm afraid to ask how long they've been around and I haven't noticed! Anyway - You are a Godsend!!  Thank you for your expertise at a price that all can afford! Diane

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Hey Mark! I'm so thankful to have found your website. I am currently struggling with getting the proper diagnosis for my four year old son. He has been tested but given the label of ODD. We have been treating this for several months with no improvement. He has actually been in therapy for over a year with no improvement. We have tried Tennex, Zoloft, and now Folcilan. ( I'm sure I didn't spell those right lol) still meds haven't helped. The Folcilan has given us a little relief. He started kindergarten this year and we are 4 weeks in and today was our first good day. He was already placed in ISS his third week of school partially for violence but also for an inappropriate word and drawing (breast) His therapist office is wanting me to place him in a 28 day facility that will take him off meds and start from scratch. I'm curious if this is a good idea. When I read the article on your page about meltdowns it's exactly what I see. There are lots of other symptoms too that I see. His therapist office feels he is autistic on the high functioning side but say they are unable to diagnose. I would just appreciate any help at all. Thank you!!

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In short, my son is diagnosed with ADHD – Inattentive type.  “High Functioning Autism” or “Asperger’s Tendencies" have been tossed around by school and community psychologists.  He is definitely defiant, but it's more like ignoring rather than blatantly defying.  He only gets aggressive if I try to pressure him to do something.  He definitely does not intentionally annoy anyone as you describe with ODD.  He doesn’t choose to annoy people; he is just too busy with his own agenda to do anything other than what interests him.  This includes bathing, putting trash in the trashcan, doing his schoolwork, etc.

My son will be 19 in less than a month and I am very worried about his future.  He has been in brick and mortar public school, and several different virtual schools.

I would greatly appreciate if you could answer two questions for me.

1) Should I be taking him to a psychiatrist to be diagnosed or is there some other approach to getting help for my child?  He is on an IEP, but academically, he is at or above his grade level even though he has completed very little schoolwork since he was 9 years old.  He is on the IEP because of the ADHD diagnosis and “Asperger’s Tendencies” indicated by the school psychologist.

2) Although he has not been diagnosed with ODD, I am thinking of taking part in your OPS (Online Parenting Support) program.  Does this make sense with the things I have shared with you?  I truly have tried everything with him and if he doesn’t want to do something, he doesn’t care if I ask nicely, yell, threaten, beg, or cry.  He just seems to get annoyed that I am bothering him with things he thinks are my problems.

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Hi Mark, 

My daughter Sophia was diagnosed in March this year with Aspergers when she was 4 and a half years old and of all the sites I have visited on-line since then I have to tell you how much I appreciate your site for all your wisdom you have in providing parents the most valuable information on this subject. I love reading your site and so appreciate the weekly emails.

My family lives in Regina, SK Canada and I was wondering if you ever travel here for conferences or have plans to, I would love to attend one of your seminars.
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 Hello Mark-
 I recently came across your work on line. You are excellent.  Clear, direct, knowledgeable. Excellent!

I am a therapist here in Boulder Co.  I have worked with sexual abuse for 30 years, both on the receiving end and teens who commit offenses.  I also have been working with teens with dx of Asperger's, PDD-NOS, NLD, AD/HD.  Two were referred to me bout 8 yrs ago after committing and charged with a sexual offense.
I realized quickly that I had to take a VERY different approach with these guys.

Since then I have learned a good amount and move deeper into therapy for ASD youth not necessarily in the juvenile justice system.  Man, it is so rewarding, fun and challenging.

Okay, I stated group work by accident.  Had about 8 fellas for 1-2 years. One day I realized- maybe they want to meet each other!  (I had groups for AD/HD boys earlier in my career... can you imagine that! I do agree they have plenty in common and the differences too).

I asked Will in our meeting- "Hey, would you be interested in meeting another fella who experiences life and perspectives similar to you?"  "Okay"

The first day they met each other was amazing. Talk about connection!  "MenzGroup" (15-18yo) was born and has thrived for the past 2 years. We have rituals, and rules, and snacks too.  I stay away from all clinical/psychological terminology (eg- social skills, social cues, impulsive, oppositional...) to the best that I can.  They have been through so much by the time they reach this age, from torture by peers and torture by professionals who want them to be different (normal). They are immediately skeptical and ready to bolt when brought to see me by their parents or P.O.s.  I work with the families too, school personnel, probation officers, psychiatrists, etc.

We talk about everything they want to talk about. They bring in their models, class N trains, key collections, musical instruments, music recordings...
We also use real life situations (at the store, at school, at home, with sibling, parents. Plain 'ol out in the community situations.  We role play, set goals, practice good relationship building and maintaining them.

I know I am going on and on, just setting the stage.  We talk a lot about sex; feelings, urges , masturbation, partners (I am more concerned with healthy relationships than gender issues), fantasies and PORN.

Many people I come across in the field do NOT like to talk about this, don't know how, avoid it, etc. Slowly, I am seeing, in the offender treatment groups I am involved with, more talk and articles about these teens who "commit sexual offenses" and how destructive it is when they are charged and treated like a criminal.  It does not work, is hugely shaming and hurtful, and totally misses the important aspects of what is really going on for that kid.

What have you experienced?  I have a lot to say (and do say) about role of sex/porn for Asperger's guys, you?

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RE: Controlling son-in-law with Aspergers won't allow us to talk to our daughter, and our daughter goes along with it...

Hi Andy,

This is a terribly unfortunate situation. I’m not sure this is fixable. My message here will be short and simple:

You will need to learn to “let go.” It would be a whole lot easier – and much less painful – to simply beat your head against a brick wall than to continue living this way. It’s beyond absurd!

Realize and accept the fact that you are not going to change your son-in-law. The more you butt heads with him, the more he will distance himself from you. I’m also very sure that he has brainwashed your daughter (in the fullest sense of the term).

The harder you try to bridge the gap, the more you are creating a gap. However, the opposite may very well be true as well: the less you try, the more likely they will narrow the gap. You are simply taking on too much responsibility for the relationship – LESS IN BETTER RIGHT NOW!

Keep quiet during tense situations. This requires major self-discipline. It may take some time to acquire this skill. The last thing he wants to hear is that you think he should do things differently. Also, I would stop all communication attempts immediately. As long as you play by his rules – YOU LOSE!

Tell them that you cannot continue to live this way. You respect the rules to his game, but you are not willing to continue to play that game.

It’s just that simple. If you make it more difficult than this, then you are back to square one (again).

Give this some time to work. It may take years for them to come around.

As you doubt my advice (which you will), remind yourself that your way hasn’t worked so far. The more you keep doing what doesn’t work, the harder it will be to turn things around some day.

I wish I had a better plan, but I’m sure a better plan is not available. You will do well to trust me here and follow my advice.

This situation is a lot like “trying” to sleep. When you can’t sleep, you try harder to get to sleep, but the harder you try, the longer it takes to fall asleep. When you stop “trying” to fall asleep, you drift off. Trying harder works against you. The same will be true with your relationship to your daughter and son-in-law. Trying harder maintains the gap.

Grieve the loss of your daughter and son-in-law. Move on. Pray. Trust.

Mark Hutten, M.A.

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 I have watched a number of your videos and really enjoyed them.  You seem to be one person who really gets it.  While I myself do not have Aspergers I believe my son Brian, my ex-husband Jason and my Dad all seem to have Aspergers.  Firstly my Dad.  He is 76.  He has 0 friends.  He is highly intelligent, esp in history.  My parents are still married.  He is extremely socially awkward and appears unaware of it.  He has many many tics for lack of a better word.  My Mom never worked when we were kids so we were forced to accommodate his every whim.  My Mother also forced us into submission.  I believe it was her way of protecting us as the meltdowns were ugly.  Imagine any adult that goes through life and always gets his way.  He has 0 friends.  Secondly, my ex.  I always said everybody loves Jason.  Spaz.  Couldn't seem to help himself.  The dog was afraid  of him.  Also, very intelligent.  Very manipulative.  When he didn't get his way firstly I would get the silent treatment, followed by numerous threats and then it got even uglier.  I could of possibly worked it out with Jason if it weren't for the inlaws from hell.  I thought nothing positive would come from that environment.  I left.  I always could look after myself.  Lastly, and most importantly Brian.  I have 2 kids.  One boy and a girl Kelly.  They are close in age, 25 and 23 and always have been and still are very good friends.  Brian is the older.  I see no sign of Aspergers in Kelly.  At the moment they are both extremely angry at me.  Brian was playing his father and I off each other, this included the new wife as well.  At one time I told him I was happy he had 2 mothers as I could use the help.  That put a bit of a halt to that for awhile.  He informed me he was going to take Engineering and he and his girl would live with me for a small fee. I told him I was proud he was going into Engineering and that if he was smart enough to pass Engineering he was more than smart enough to figure out how to pay for it.  He is doing so at this time.  He was 22 at that time.  The other one was asked to move out at 21.  She was told that if she is old enough for sex, she is old enough to pay her own hydro bill.  She now works and pays her own bills.  I won't take anymore of your time.  I love my kids.  They will come around because I know they love me and they know I love them. I need help and advice so when they come around I am ready.  I have no family support.  I am very open to advice.  Sincerely,  Penny Yeomans  PS, Brian was an oddly exceptionally well behaved kid until I left his dad.  He did suffer a lot of depression.  He doesn't drink or do drugs.  He claims he is allergic to alcohol.  Thank-you Jesus is all I have to say about that.  There is too much to tell you. I will eventually get Brian in to be assessed.  He is very gifted in Math.  He sees the world in patterns.  He was 16 months old when he was in the hosp for his bladder.  They, for whatever reason had a psychologist assess him and they told me he was years ahead of himself in Math.  They returned him to me without fixing his bladder problem and I raged all the way home about the fact he didn't talk, still pooped his pants and they were testing his Math abilities.  It goes on and on for years.  Nobody ever mentioned the word Autism.  Thanks,  Penny

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My husband and i are united in the battle to handle both our daughter’s mental illness, as well as other medical issues; thus, years ago, we were able to get the Power of Attorney for Property and Personal Health, plus
we had our daughter with us when we signed up for the Henson Trust.
In reference to our daughter running away, we had to interfere with our POA at the bank that she dealt with. To the credit of this particular bank( not all financial institutions are as accommodating),
we managed to cancel her account there and set up a joint account at another financial institution. With this in place, we have control of any of her incoming money, and she requires two signatures
to withdraw any money. We make sure that she has everything that she needs and provide her with a modest amount of spending money each week.
Where we live, children need to attend school until age 16 according to provincial law. Our daughter is in her late 30’s and on a disability pension, but she is high functioning, to the point that I felt like a private-eye
in attempting to catch her to giver her the help that she needed.
Clinical depression information I obtained from my local mental health office, where I served on the Board of Directors for eight years.
Electronic communications with all with whom I need to  converse, is my greatest aid.
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 RE:   Organization skills for autistic adults

Hello:


The Special Education Service Agency has a grant program called the Alaska Autism Resource Center (AARC), which provides information, referrals, training and consultation for individuals on the autism spectrum, their families, caregivers and service providers across the state of Alaska.  You can see more about the agency and the AARC at http://sesa.org.

Providing information is a key component of the AARC mission, and one method the program uses is information packets designed for parents, teachers and paraprofessionals.  These packets contain brochures, booklets and other items that we have created or purchased through various organizations. We estimate that we distribute 100 packets of each type every year. We are exploring the concept of doing this packet as both a paper version, and as a pen drive (with links, not necessarily full text).

We are in the process of creating a packet that will have information specifically for adults on the autism spectrum. We are gathering information and articles, and we are interested in the above-referenced article from your website.

We would like to include this article in the packet, for a total of 200 copies of each article over a two-year period.

Thank you so much for your consideration--



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Hello Mark,

My 14yr old definitely has ODD -- Finally, a description to his behavior.  For years we (my husband and I) have been struggling w/Jeffrey's behavior.  This morning, a simple "No" turned into him telling me "F U" throwing a sneaker at me.  Saying he wasn't coming home on the bus and will walk to where he wants to go after school, with or without my permission.   We are at our wits end with him.  He walks around the house cursing and knocking things over.    Saying he doesn't care about this or that.  And never listens.  He won't eat any meal outside of his room.  He rarely joins in on family functions.  He will destroy things without care.  We went to therapists & doctor's and honestly no one really get's him or understands what we are going through.  They tried to prescribe anti-depressants, but that is not the answer we are looking for.   We just want a caring child who behaves and speaks appropriately.
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I have just read your first book chapter. I am an MD and ENT here in Colombia.  I have a high suspition my 21 yo son has Aspergers, i have been w many specialists for him but no one told me this could be the problem.
At 9 yo he was tested for a IQ and it was 151 mostly by his language abilities. Despite this fact, during teenage it was really a complete challenging period for us as parents. Although he has improved a lot in personal and social actitude still is struggling to find his career way.
We always come to the point of lack of interest or feel rejected by peers or confronting his teachers.
Now reading all this and going through a process of psycological evaluation for pilot it scares me if this is a safe path for him to pursue knowing the limitations he can have. This is my question for u and if you  believe it could be too dangerous for him.
On the other hand to thank you for this complete resource for us like parents of very particular kids.

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Dear Mr Hutten,
I live in Cardiff, UK, and purchased your book "living with an Aspergers partner or spouse" after starting to experience serious difficulties in my marriage. I now have an official diagnosis of "high functioning autism" (Aspergers is no longer a recognised condition) coupled with "adult attention deficit disorder". I found the book very helpful and it explained most of the problems which I experienced in the marriage.
Unfortunately the marriage could not be saved (although I tried as best I could) and my wife is now in the process of divorcing me on the grounds of "unreasonable behaviour". She feels that my behaviour is unlikely ever to change and that divorce is the best course to take. There is little I can do now except cooperate. I do have two lovely daughters who I see regularly.
However I am now looking to the future. I have met a young woman (through a church choir) who has Aspergers. She has three children who have all been taken away from her by social services as she has been deemed unfit to look after them. They live with her ex-husband and she is rarely allowed to see them. Her Father is dead and her Mother has disowned her. Unfortunately she was taken advantage of by several men earlier this year and as a result is expecting a baby in December. She does not even know at this stage who the Father is. She is also in a great deal of debt. She has been told that when her baby is born it will be taken away. She is in a desperate situation and has nobody to support her. We get on well together and I am beginning to feel that we could support each other, so I am wondering about the possibilty of us getting together eventually. I am writing to ask your advice about this. Have you come across such a relationship? Can such a relationship work, or would it be a recipe for disaster? I am wary of becoming too involved as I am worried that such a relationship would not work. I would be interested to hear any advice you can give me on this.
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Dear Mark,
Firstly I wanted to say hi, I run the Aspergers Test Site and its always great to reach out to fellow bloggers.

Recently one of the subscribers to the Aspergers Test Site mailing list contacted you about broaching the possibility of Aspergers in their partner. You gave him this quote:

"If one has Aspergers, it is better to know than not to know. If you have Aspergers and don’t know, it affects you anyway; if you do know, you can minimize the negative impact and leverage the positive. Without the knowledge that one has Aspergers, one often fills that void with other, more damaging explanations such as failure, weird, disappointment, not living up to one’s potential, etc."
I wondered if you would give me permission to quote you in an article, im writing about how to broach the issue of getting an Aspergers Diagnosis with a loved one?
Also I noticed you have several books. Would you be interested in doing a cross promotion with your mailing list. I have one book for adults with Aspergers and I also run a magazine called Autism Parenting Magazine and we are always looking for new readers. Let me know your thoughts.

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 Hi Mark,
I have been enjoying the wit and wisdom in your podcast on Parenting Defiant Asperger Teens.  I had been looking for assistance for my teens to be able to interact more meaningfully with my new 16yo step-son who was diagnosed with Aspergers in his early primary school years. 

A happy upshot of finding your podcasts available online today was that listening to them I was struck by how similar the outbursts were to my step-daughter's.  Her behaviours of concern have been escalating since we announced our engagement in February this year.  We thought things were going fairly well until escalating again recently.  Alot of the very words you use in examples of parents and the adolescent are word for word.
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My younger son Mario, who just turned seven last week,  has recently been diagnosed with being on the autism spectrum. (As I'm sure you know, the new DSMV has changed yet again, and aspergers  syndrome is now generalized back under the autism diagnosis.)  I am facing a neglect charge in the state of Maine with the Department of Health and Human Services,  (DHHS),  partially due to my son Mario's behaviors. (I'm opposing the negligence charge) As far as they are concerned, I am being negligent as I cannot manage his behaviors. Additionally, I have an older son Sal who turned 10 in June, whom often targeted Mario with aggression, due to the fact that he thought I was favoring his younger brother. As I've said previously, I have sent a link from your newsletter to my lawyer, so he can also understand the autism factor, especially in dealing with behaviors.  With luck, he will be able to take some of your knowledge and present it to the court in such a way that they can also understand.  I'm a year out of an abusive 15 year marriage that both my children have suffered from in various ways. Instead of going into much more detail, I'll end my explanation here.

I'm not looking for pity nor for judgment, but actual help that I can use to better my situation with myself and my boys and to bring them home. I have tried several programs with social services, however because of  cutbacks and insurance issues, (my children weren't progressing quickly enough),  they were not as helpful as they could have been. Your book and your website, along with all the things I keep discovering on it have been helpful to me.
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My husband and I live in Johannesburg, South Africa and have not been able to find many resources here that can help us and now our situation has become very serious in the sense that we are both completely exhausted and quite frankly I, personally, am for the first time feeling hopeless that our situation will improve or work out. Let me explain briefly.

We took 4 year old twin sisters in foster care in May 2010 (about 3,5 year ago) who turned 5 years old about a month after they came to live with us. Until that time they had spent their whole life in an orphanage. Therefore they suffer from Reactive Attachment Disorder and are very affected by being institutionalised for so long. They have also been diagnosed with ADHD and anxiety but there is not much awareness of RAD here and therefore that is something we have learned about ourselves from the internet but the girls show a number of the symptoms.

This year has been particularly difficult but the girls started primary school last year and are repeating Grade 1 this year (which I am not surprised about due to their background) but initially they seemed to be doing ok in the mainstream school with the extra support available (extra reading etc). However the one girl – who has always been a bit more naughty started getting into trouble the second half of last year for steeling etc. at school. This started again early this year and in March I had to go and see the principle and the result was that we transferred her to a special boarding school (boarding from Monday to Friday) which is for children with severe behavioural issues (and is familiar with attachment disorder).

The other girl who stayed at home (because her history has not been as "bad") and continued in her normal school started acting out in July (after we came back from overseas where we visited my family for a month) and has now burnt all bridges and is going to join her sister in the boarding school in the beginning of October which will hopefully give my husband and my self (and our 4 year old son and my husbands 12 year old son who sometimes stays with us) some break and enable us to handle the girls better when they come home over the weekend. 

This is only a brief introduction and of course a lot of information missing but the reason for the urgency is that the girls are in our foster care and the contract will be up for a renewal in June next year and the way I'm feeling at the moment is that we should not renew because I feel the girls are beyond any further help. And that brings the whole guilt of bringing more rejection on the girls on top of all the other issues they are dealing with – in addition to the heart brake it will cause our sons, us and the rest of our family and friends that have learned to love the girl over the past years. 

Since we are taking the action of sending the other girl to join her sister at the boarding school I'm hoping that we will manage to get some clarity on the situation (and regain some of our sanity)  but I feel like we need some serious assistance to help us make the right decision or at least to take steps in the right direction for all of us. 

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Thank you for all the information that I received from about Aspergers. Do you have any information like the one you provide in English for Spanish Speaking parents?  I work at a school and we have several parents with Asperger's kids and would like to get more information like the one you provide in English.  I will really appreciate your respond on this.  Thank you for all you do!

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 Hi Mark- I subscribe to your newsletter and read it religiously.  So much of the advice you offer applies directly to our life with our 10 year old son, Jonah, who was diagnosed with Aspergers and ADHD when he was 6 years old.  I am very appreciative of the expertise you offer weekly!

Jonah has been in a weekly Social Skills Group through a local private organization that specializes in Autism since his diagnosis, and also participates in a Social Skills Group once a week at school, as part of his IEP.  Socially, he is doing very well.  He has lots of friends and prefers, above all else, to spend time with them.  

Jonah excels academically and participates in the Gifted and Talented program at his school.  He always scores very highly on standardized tests, and gets good grades on his report card in all areas, with the exception of organization.

Jonah is in fifth grade now, and where we have struggled with him since he began school, is with homework.  As the years have gone on and school has gotten more fast-paced, the struggles have progressively gotten worse.  Each evening when we finally get him to sit down at the table to start his homework after MUCH effort on our part to even get him to the table, he screams and cries and whines saying "I can't do it. It's too hard. Why are you making me do this?" etc.  Once he finally calms down, after 15-20 minutes of crying, my husband or I have to sit with him the entire time in order for him to complete the assignments.  He is perfectly capable of doing the work and often when he gets started he finds that it is actually quite easy for him.  Getting him to that point, however, is a knock-down-drag-out battle.  Night after night, this happens and my husband and I are exhausted.  Middle school starts next year, and we are terrified of what that will bring to the homework struggle.

Jonah has always had issues with anything that seems even remotely difficult to him, as he expects perfection immediately.  I suspect this is what the issue is with homework, as well, but I am at a loss with how to get him past this. Any advice you can offer is much appreciated. Thank you, Mark!
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Hi Mark,

I apologise in advance, because I'm certain this will be a very long email. But I am hoping you are able to help me, I am extremely desperate. I will start from present and work my way back in time.


I have lost my 13 1/2 year old son, Brodie ! I have only seen him for three days out of this month of September, and that was 3 weeks ago. He is with his father by his own choice and does not wish to come home, nor even to see me or his sister. I have had some telephone contact with him, but not terribly positive, he usually answers my call, not by saying "hello mum", but "yeah". And I usually end up in tears because he tells me and his sister, he does not want to see us and is not ready to yet. And his father is not helping the situation either, re enforcing to him that, it's ok you are fine with me, mum can't make you go home or do anything you don't want to do, you don't have to see her if you don't want to, I will not force you to, and she can't get the cops to take you home either.  I don't think he is even encouraging Brodie to want to see me. I have had a mental heath plan done for Brodie to attend a psychologist as well, but he refuses to go, and cannot understand that this is part of the solution for all of us to understand, function and get better.

Brodie has an Auditory Processing Disorder, as well as Dyslexia and bad Working Memory. He has not been formally diagnosed  with Asperger's, but I think at the time when testing was done, which was quite a few years ago, he did not have enough signs. But since the onset of puberty, and especially lately more have become apparent. With fixation on gaming, nothing else matters, his lack of emotion, to show empathy or understand feelings, and to have massive meltdowns over the smallest things,and or not getting his way, and other symptoms.

I have always had my children do chores, and have to moreso now, due to myself now having a physical disability, and being a single parent as well. But I think it teaches them to be self sufficient as well. They are written up on a roster, and reward of electronics come afterward if they are done. Brodie does not like this and a lot of the time he will attempt, but does not finish. His father however, refuses to do such a schedule, and has never made Brodie do anything. I also have a locked door room for the electronics to be kept. I have always been firm with my "no" can't have, and do not give in.

Due to having a 2 storey house, and unable to repeatedly go up and down stairs to call Brodie, I am required to yell out to him from downstairs, but also loud enough through his closed door. And sometimes I do get frustrated and yell (raise my voice)to him, like to get out of bed 5,6,7 times or more in the morning to go to school.

His father has not played an active role in his life or been interested in it much. Just has had Brodie every other weekend. It has been me that has taken care of him, all his medical,  testing, specialists, schooling, including bulling issues in previous years. He has no understanding of Brodie's disability, and thinks something is wrong with him, why he doesn't get stuff, and wants to toughen him up ! He think's Brodie is too much of a "soft cock", as he says. And has told me people say to him, "what's wrong with Brodie", as in, him being withdrawn an not wanting to socialise and try new things. I have to keep reminding him I have been trying for years to make Brodie self sufficient, but like lots of things said, falls on deaf ears.

Brodie has indicated for a while he would like to spend more time with his father. His father however has his own bachelor lifestyle, and repeatedly said it would be too inconvenient for Brodie to live with him. We did do a trial of week about, and Brodie liked that, and wanted it, but I ended it, due to knowing his father did not really want it, and his father's residence, which was him still sharing a house with his ex of 4 yrs and someone else  as well. Him and the ex get verbally abusive with each other, and I did not want Brodie around that, nor do I want him to think it is acceptable for men to speak to women in that manner. Brodie resumed living again at home with then back to only seeing his father again every second weekend, which eventually flared up again, because he didn't like it, and having to do chores etc. what he does at home, would have an anger tantrum grab the ph and call his father and have a meltdown, and said he can't handle it anymore.

Brodie has threatened to runaway from home as well, and did during the last school holidays, but returned after a few hours. I do not want him to do this again, I have not insisted his father bring him home against his will for fear he will do this, as I want Brodie safe as well. Brodie has no problem with doing what his father asks, including getting out of bed early in the morning for school apparently ! As his father gloats to me ! But I try to get through to him that of course Brodie is, because he wants to be good for him so he can stay with him ! Brodie's father has always used me as punishment, saying to Brodie, if he does not do as he is told or what his father wants to do then "I'll take you home to your mother ". And same in this case.

Brodie's father and myself were only together for 18 months out of Brodie's life, and separated when Brodie was about 4 yrs of age. We have no legal parenting orders in place as we have always been amicable with access arrangements with Brodie.

My friends have advised me to wait it out, saying his father will grow tired of the situation and Brodie will slip up sometime with trying to please his father. But I don't know if I can, it is killing me not seeing him or being able to hug and kiss him. I love him so much and miss him so much. And so does his sister.

I desperately need your help ! I don't know what to do ! I don't know what I can do to get Brodie back, or to get him to want to talk to me or let me see him. I find myself writing this email to you at 1.30am in the morning after lying in bed crying, not able to get to sleep.


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 Your description of the SPD fits my 6 year old girl perfectly. Your research into the matter is very complex and in depth, and it helped me tremendously to understand her. We live in Northern Virginia area, and I was trying to find a good speech pathologist/therapist who could officially diagnose her and work with her. If you have any recommendation I would greatly appreciate it. And also, could you point me towards resources/studies that I could read and inform myself as well. I need and I want to help her so much, if I could find the right way to do it.

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  Beginning many years ago, my son, who was adopted from Russia, was very attached to his blankets.  At first, we weren't concerned, thinking that the blankets merely offered comfort to him, comfort that he didn't get as a baby in an orphanage.  Starting last year, at just about the same time as my husband was diagnosed with brain cancer, this "attachment" took on a much more of an obsession than merely an attachment.  Over the past year, he has stolen blankets from my next door neighbor, a friend (when we stayed overnight at her house), from our church, from a fellow Boy Scout on a campout, from a skiing lodge when the Scouts went skiing, from a mission trip location, and finally right before my husband passed away, from a neighbor's house (someone he didn't even know) in the middle of the night.  He was brought home in a police car, in handcuffs.  He was charged with a felony and tresspassing.  For several months he had to wear an ankle monitor, but when we went to court, the judge ordered him to go to a residential treatment facility.  He had been seeing a psychiatrist and psychologist regularly during ALL of these things, seemingly to no avail.  Of course, now that he is in a residential treatment facility, the opportunity to steal blankets simply does not exist.  The treatment team thinks he is making great progress and he may return home next month.  I have had a security system installed, but I am petrified that he still has the obsession.  Our psychiatrist told me that obsessions are the hardest to "cure."  He has already been told by our lawyer that IF this behavior cannot be controlled, he will most likely end up in prison OR shot as an intruder into someone's home.

I just do not know what to do.  We probably have 10-15 blankets in our home that he can have, but the need for a "different" one seems to be so deep rooted, most likely due to the lack of bonding and cuddling that he did not get as a baby.  Would hypnosis work?  ANY suggestions you have to offer would be most welcome.  I have read your articles with great interest for about 18 months now, but I have never seen any issue such as ours.
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We are struggling more with Meltdowns at school.  Oh, we have them at school and at church occasionally but my bigger concern is with school.  My child ranges more as a High Functioning Autistic child (the school once referred to him as Asperger's) but I think he is a little more significant than that.  As he doesn't have the language skill set that most Asperger's children seem to have.  Do you think that your program could help with him not having meltdowns at school?? 
As that is where I am at the end of my rope, as you know if these behaviors are too much they will say he is not in his least restrictive environment and move him to be with students that are much lower functioning than he is.
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 My grandson age 9 for the last 4.yrs has had a challenging time. Dr appts assessments , rx and change in rx.  Last year his trouble really ramped up at school. Before the year was out, he was moved to a smaller school. Already last week he had such a violent situation they won't allow him back until , well his mom is not sure. The social worker came explained to him that he will be temporarily home schooled 2 hrs a day in a public place and attend a 3 hr per day class designed for his situation . My daughter is ok with the 3 hr class she wanted him in there last yr, but the school assured her they could handle it, how this is where she is at.  The social worker advised her they could even press charges on him for his violent reaction but that they would not . My daughter is frustrated with that for she feels both her and my grandson are being treated unfairly. However my one question is, he does very very well in all situations but at school where neither her or I are at. We don't have much issue with him at home , errands , playing with friends etc .

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 Hello, I have sent you a few emails over the last few years.  I am starting (for the second time) your online book I purchased - my aspergers child even though the last counselor told me my child has full blown narcissism and not aspergers.  I don't know what else to do.  I sit here reduced to tears because all I do is yell at my child and I really don't want to be around him.  I just torture myself with guilt, but I really don't want to be anywhere near him.  I had him live with my sister for about 9 moths and that gave my family a break. (my sister now understands what I go through and she by herself had a very difficult time with him but at least there were no other kids around that he could torture) My younger son got a much needed break.  He went from throwing up  2 or 3 times a week to not throwing up at all.

Now here I sit still not knowing how to handle my child. And my younger child is having the same physical signs of stress.  My older child is verbally brutal and spews venom.  Last time I tried the book, it - I don't know just didn't work.  I mean I didn't stay with it.  So I am trying it again.  I am not the best reader.

My child with whatever he has is perplexed as to why others are mad at him or offended by him even though I go to great lengths and explain in great detail why they are mad at him.  I have to scream so loud it hurts my throat to get him to realize the impact of his behavior on others.  And as I'm sure you already know, I am not very nice to him.  I tell him I don't want to talk to him at all.  And I tell him why and we always have two very different versions of events that occurred.

It's very hard for me to sit and read, but maybe I can do it this time. My son is 14-years-old, a freshman, he has good grades and lots of friends,(although I suspect if anyone of them had to do any work with him regularly he would lose some of them),he breaks something in the house about once a week and he is clumsy.  I divorced his dad who gave my son the same gene that he had.  He has since died from what is most likely effects of drug and alcohol abuse.  I can't divorce my son.  I am just wiped out.  I won't even get started on why my current husband thinks.

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I have a 15 year old son with asperger's who has the most incredible anger issues. He is receiving counselling, but none of the strategies they give us seem to make any difference!

The problem is there is never any warning of when his anger will erupt and therefore no time to prevent it happening! There are also no specific triggers! It can be anything from something happening at school, his brother annoying him (just by breathing!), or me!

He is very, very abusive and calls me the most disgusting names, afterwards he is always devastated and extremely remorseful! I am at my wits end with worry for him and total exhaustion for me! He is very intelligent and has a very good insight into his condition, I think this is sometimes to his detriment!

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Dear Mark,
I am in the midst of legal proceedings to  finally sorting out my sons contact with me.

Whilst I recently got more Direct Contact with him via a court order. My EX was furious with, (as she tried in court to reduce ALL my contact). But as the In Direct contact was by agreement between us, she acted unilaterally and reduced it to 17% of what it was before the hearing. It is obvious that she did this to punish me for getting more Direct Contact with our AS son.

I am now seeking via the court that the original in direct contact be reinstated. My Ex is now telling the court that it is in our son's "best interests" to have such a little amount of In Direct contact with me, despite our son saying he wants more contact, both; Direct and In Direct.  I need some scientific data to support my position, so I get to speak to my son daily, as opposed twice a week as she allows now.

She refuses to allow him his own phone or let him take his iPad with him (so he could skype me) so any In Direct contact is always controlled through her.

Additionally, with his AS, routine is important to him. Even though we had established a daily routine for over two and half years, she disregarded it in the blink of an eye to get back at me for her perception that I "won" in court.

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16.9.13

Clingy Behavior in Children with ASD [High-Functioning Autism]

"Any advice on how to deal with separation anxiety in a child with high functioning autism? Dropping him off at school is a nightmare!"

You used to leave your high-functioning autistic (HFA) child with loved ones or drop him off at school with a kiss on the cheek and a quick wave goodbye. Clingy behavior seemed to be a problem only for other children. But, now your goodbyes trigger tears or tantrums – or both.

If your youngster's clingy behavior seems intense or prolonged (especially if it interferes with school or other daily activities), you will want to address this situation sooner than later, because the longer it goes on, the worse it gets and the tougher it is to treat.


Each youngster handles stress differently, so the causes of clingy behavior will be different for each boy or girl. A parent's job is to play detective and figure out what's causing clingy behavior. Sometimes clinginess may be triggered by situations such as:
  • bullying
  • family stress 
  • new child care situation
  • new home
  • new school
  • new sibling

Keep in mind that the goal here is for your child to learn to cope with life without you, however long it takes. 

Here are a few parenting tips that help make goodbyes less stressful:

1. Ask your child if there is anything worrying him (e.g., bullying, illness, bereavement, etc.). Try to identify what might be causing the clinginess and describe his feelings so he begins to understand it. By describing his feelings and expressing your own feelings of wanting to be there for him, he will feel understood and be less likely to need your physical presence as reassurance.

2. Teach how to "talk to the fear." Help your youngster name the feeling (e.g., "I'm afraid"). Then, teach him how to talk back to the fear so he is in charge of the fear and not the other way around. The trick is to have him practice telling himself he'll be okay to build confidence (e.g., "Go away fear, leave me alone. Mom will come back.").
 

3. Kids on the autism spectrum (as with all kids) build self-confidence through mastering new tasks and contributing to their environment in a helpful way. Create tasks that your youngster can help you with at home (e.g., setting the table, cooking, cleaning up, etc.). The more confident a youngster feels in her abilities, the more secure she will feel in ANY environment.

4. When kids exhibit clingy behavior, it is generally viewed as a positive sign that they feel close and secure in the parent’s care and go to the parent for comfort when they are feeling distress. Responding to clingy behavior by ignoring or punishing it may make your youngster less likely to come to you when he is feeling afraid or vulnerable.

5. Some moms and dads find it easier to sneak out when their son or daughter has a hard time or throws a tantrum each time they leave. But, this will only increase your youngster’s anxiety and clinginess, because she will be afraid to engage in any activity too long for fear that you may sneak out and disappear at any moment.

6. Find people your child trusts (e.g., neighbor, relative, friend, etc.) who know your youngster's quirks, routines, likes and dislikes. Gradually stretch separation times, and slowly broaden your youngster's "inner security circle."

7. If you're leaving your youngster at home or in another familiar environment, give him a gentle goodbye – then go! Encourage your youngster's caregiver to distract him or engage him in a new activity right away. If you're leaving your youngster in a new environment, you might play with him for a few minutes to ease the transition. When you leave, remind him that you'll be back. Be specific about when you'll return (e.g., "after school").

8. Give your youngster something to look forward to. Discuss something fun that will happen while you're gone.

9. Make things more predictable for your youngster by making the schedule or routine as concrete as possible. Although you know your youngster’s schedule, she may not. HFA kids don’t have a clear sense of time, live mostly in the here and now, and have shorter memory spans. Using pictures to depict their weekly schedule (especially when it changes every 2 to 3 days), telling them what to expect next, and reminding them when you will be available to spend time with them (e.g., "Remember, our special snack time is after school") will help reduce anxiety by bringing a sense of orderliness and structure to their day.

10. Socializing with kids the same age can help these young people develop attachments to their peers and can build social skills necessary for interacting with people outside of the immediate family. Set up regular play dates with a friend of your youngster’s choice from school, or schedule a class or weekly trips to the park.




11. Keep the crying and tantrums in perspective. Your youngster's tears and anger are an attempt to keep you from leaving. When you're gone, the tears and anger aren't likely to last long (especially once your youngster is engaged in a new activity).
 

12. Studies reveal that kids whose mom or dad prepared them for a separation were able to leave the parent far easier and protested far less than those not prepared. So, for example, drive by the birthday party in advance, go meet the new teacher before the first school day, take an online tour of the school before the move, and so on.

13. Leave a special reminder. Offer a blanket, stuffed animal or other comforting object for your youngster to hold while you're gone.

14. Practice saying goodbye. Do some role-playing. Eventually your youngster will learn that he can count on you to return, just as you did in the role-play.

15. Create "goodbye" rituals. Create a special kiss, or provide a special pebble or key chain to put in his pants pocket, then explain that when he touches the item, it means you're thinking of him.

16. Praise your youngster for tasks or activities that she is able to do independently (e.g., household chores, playing nicely on her own or with friends, etc.). Praising your youngster for doing things independently sends the message that she is capable of doing things for herself and should feel confident without your close supervision and guidance.

17. Some kids on the spectrum feel a constant need for affection because they are not sure when or if the attention will be available. Schedule 5 to 10 minutes every day when you can provide your youngster with undivided attention (i.e., no computer, T.V., cell phones, etc.).

18. Use a consistent phrase when saying goodbye (e.g., “I’ll see you again shortly”). Be brief, don’t linger, and don’t overreact if your youngster gets upset after saying goodbye. Overreacting will only feed into his anxiety and make it worse, while lingering will increase the likelihood that he will continue to sulk or seek your attention to prolong your stay each time.

19. Occasionally, you may need to stay with your youngster during social activities. Play with her and her peers until she is comfortable playing on her own. Be available during play dates to teach and model social skills, respond to conflict, and monitor situations that may cause stress or anxiety.

20. Use social stories, drawings, and other creative approaches appropriate to your youngster’s age to explain what he is thinking and feeling when you leave him somewhere.

21. Parental anxiety feeds into your youngster’s anxiety, so curb your anxiety and watch how you react. Kids can catch our fears.

22. Time your departure carefully. Your youngster may be more likely to have a tantrum when you leave if she is tired, hungry or restless. When possible, leave when your youngster is fed and rested.

23. Recruit one of your child’s peers to support him (e.g., peer comes to your house and walks with your child to school).

24. Develop a plan for gradual separation whereby you gradually shorten the period of time you spend saying goodbye – and increase the amount of time apart.

25. Avoid over-protection and too much reassurance. Always rescuing or being overprotective robs your youngster of confidence. The key is to find the balance between pushing and protecting. 
 

9.9.13

Best Treatment Options for Asperger’s & High-Functioning Autism

 "What are the best treatments for children on the autism spectrum (those that are high functioning)?"

The core traits of Asperger’s (AS) and High-Functioning Autism (HFA) can't be cured. But, many kids on the autism spectrum grow into happy, well-adjusted grown-ups. Most of these young people will benefit from early specialized interventions that focus on behavior management and social skills training. Certain medications and supplements can also help with associated symptoms (e.g., anxiety, sleep problems, etc.). Your physician can help identify resources in your area that may work for your “special needs” son or daughter.

AS and HFA treatment options include the following:

1. Applied behavior analysis: Applied behavior analysis (ABA) is the applied research field of the science of behavior analysis and supports a wide range of treatment strategies. ABA is widely recognized as a safe and effective treatment for kids on the autism spectrum. It has been endorsed by a number of state and federal agencies, including the U.S. Surgeon General and the New York State Department of Health. ABA principles and techniques can promote basic skills (e.g., looking, listening, imitating), as well as complex skills (e.g., reading, conversing, understanding another person’s perspective).

2. Aripiprazole (Abilify): This drug may be effective for treating irritability related to AS and HFA. Side effects may include weight gain and an increase in blood sugar levels.

3. Avoidance diets: Some moms and dads have turned to gluten-free and/or casein-free diets to treat autism spectrum disorders. Many parents assert that these diets work, but anyone attempting such a diet needs guidance from a registered dietitian to ensure the youngster's nutritional requirements are met.



4. Cognitive behavioral therapy: This general term encompasses many techniques aimed at curbing problem behaviors (e.g., interrupting, obsessions, meltdowns, angry outbursts), as well as developing certain social skills (e.g., recognizing feelings, coping with anxiety). Cognitive behavioral therapy usually focuses on training the youngster to recognize a troublesome situation (e.g., a new place or an event with lots of social demands), and then select a specific learned strategy to cope with that situation.

5. Communication and social skills training: Kids with AS and HFA may be able to learn the unwritten rules of socialization and communication when taught in an explicit and rote fashion (much like the way students learn foreign languages). These young people may also learn how to speak in a more natural rhythm, as well as how to interpret communication techniques (e.g., gestures, eye contact, tone of voice, humor, sarcasm).

6. Computer-assisted therapy: Many remediation techniques have not taken into account that children on the spectrum suffer from difficulties in learning social rules by example. Computer-assisted therapy has been proposed to teach not simply using examples, but to teach the rule along with it. Learning starts from the basic concepts of knowledge and intention and proceeds to more complex communicative actions (e.g., explaining, agreeing, pretending).

7. Dietary supplements: Numerous dietary supplements have been tried in children on the autism spectrum. Those that may have some evidence to support their use include: Carnosine, Omega-3 fatty acids, Vitamin B-6, Magnesium, and Vitamin C (usually in combination with other vitamins).

8. Floortime: The Floortime/DIR approach is a developmental intervention to autism spectrum disorders. Its core principle is to understand the youngster's sensory differences, follow the youngster's lead, and use these to encourage the child to climb up the developmental ladder. This approach is based on the idea that the core deficits in autism spectrum disorders are individual differences in (a) difficulties in communication and relation to others, (b) motor planning problems, (c) the inability to connect ones desire to intentional action and communication, and (d) the sensory system.

9. Guanfacine (Intuniv): This medication may be helpful for the problems of hyperactivity and inattention in kids with AS and HFA. Side effects may include drowsiness, irritability, headache, constipation and bedwetting.

10. Melatonin: Sleep problems are common in kids with AS and HFA, and melatonin supplements may help regulate your youngster's sleep-wake cycle. The recommended dose is 3 mg, 30 minutes before bedtime. Possible side effects include excessive sleepiness, dizziness and headache.

11. Naltrexone (Revia): This medication may help reduce some of the repetitive behaviors associated with AS and HFA. However, the use of low-dose naltrexone — in doses as low as two to four mg a day — has been gaining favor recently. But, there's no good evidence that such low doses have any effect on AS and HFA.

12. Olanzapine (Zyprexa): Olanzapine is sometimes prescribed to reduce repetitive behaviors. Possible side effects include increased appetite, drowsiness, weight gain, and increased blood sugar and cholesterol levels.

13. Pivotal response therapy: Pivotal response therapy (PRT) is a naturalistic intervention derived from ABA principles. Instead of individual behaviors, this approach targets pivotal areas of a youngster's development (e.g., motivation, responsivity to multiple cues, self-management, social initiations). The youngster determines activities and objects that will be used in a PRT exchange. Intended attempts at the target behavior are rewarded with a “natural reinforcer” (e.g., if a youngster attempts a request for a stuffed animal, he receives the animal, not a piece of candy or other unrelated reinforcer).

14. Relationship based, developmental models: Relationship based models give importance to the relationships that help AS and HFA kids reach and master early developmental milestones. These are often missed or not mastered in young people on the autism spectrum. Examples of these early milestones are (a) engagement and interest in the world, (b) intimacy with a parent or other caretaker, and (c) intentionality of action.

15. Relationship Development Intervention: Relationship development intervention is a family-based treatment program for kids on the spectrum. This program is based on the belief that the development of dynamic intelligence (i.e., the ability to think flexibly, take different perspectives, cope with change, and process information simultaneously) is key to improving the quality of life for AS and HFA kids.

16. Risperidone (Risperdal): This medication may be prescribed for agitation and irritability. It may cause trouble sleeping, a runny nose and an increased appetite. This drug has also been associated with an increase in cholesterol and blood sugar levels.

17. SCERTS: The SCERTS model is an educational model for working with kids on the autism spectrum. It was designed to help parents, teachers and therapists work cooperatively together to maximize progress in supporting the youngster. The acronym refers to the focus on: (1) SC - social communication (the development of functional communication and emotional expression); (2) ER - emotional regulation (the development of well-regulated emotions and ability to cope with stress); and (3) TS - transactional support (the implementation of supports to help parents, teachers and therapists respond to the child's needs, adapt the environment, and provide tools to enhance learning).

18. Selective serotonin reuptake inhibitors (SSRIs): Drugs such as fluvoxamine (Luvox) may be used to treat depression or to help control repetitive behaviors. Possible side effects include restlessness and agitation.

19. Sensory integration: The term Sensory integration means the ability to use all of ones senses to accomplish a task. Unusual responses to sensory stimuli are common in kids on the spectrum. This treatment includes prism lenses, physical exercise, auditory integration training, and sensory stimulation such as "deep pressure," which is firm touch-pressure applied either manually or via a hug machine or a pressure garment. Occupational therapists sometimes prescribe sensory treatments for AS and HFA kids.

20. Social stories: Social stories is devised as a tool to help kids on the autism spectrum better understand the nuances of interpersonal communication so that they can interact in an effective and appropriate manner. Although the prescribed format was meant for high functioning children with basic communication skills, the format was adapted substantially to suit children with poor communication skills and low level functioning. Social stories are being used in targeted ways to prepare AS and HFA children for social interaction and assist with coping skills.

21. TEACCH: Treatment and Education of Autistic and Related Communication Handicapped Children (TEACCH) emphasizes structure by using organized physical environments, predictably sequenced activities, visual schedules and visually structured activities, and structured work/activity systems where each youngster can practice various tasks. Moms and dads are taught to implement the treatment at home. One study found that kids treated with a TEACCH-based home program improved significantly more than a control group.

22. The P.L.A.Y. Project: The P.L.A.Y. Project is a community-based, national autism training and early intervention program. The program is designed to train moms and dads to implement intensive, developmental interventions for younger kids (2 to 6 years) with autism spectrum disorders. The program is operating in nearly 100 agencies worldwide, including 25 U.S. states and in 5 countries outside of the U.S. The P.L.A.Y. Project received a $1.85 million grant from the National Institute of Mental Health to conduct a 3-year controlled, clinical study of the P.L.A.Y. Project model. The study compares the outcomes of 60 kids who participate in The P.L.A.Y. Project with the outcomes of 60 kids who receive standard community interventions, making it the largest study of its kind. Before and after the 12-month intervention, each youngster is assessed with a battery of tests to measure developmental level, speech and language, sensory-motor profile, and social skills.




Additional suggestions:
  • You'll need to make important decisions about your youngster's education and treatment. So, find a team of educators and therapists who can help evaluate the options in your area and explain the federal regulations regarding kids with disabilities.
  • Lean on family and friends when you can. Ask someone who understands your youngster's needs to babysit sometimes so that you can get an occasional break. You may also find a support group for moms and dads of AS/HFA kids helpful. Ask your youngster's physician if he or she knows of any groups in your area. 
  • Most kids with AS and HFA have no visible sign of disability, so you may need to alert teachers, coaches, relatives and other grown-ups to your youngster's special needs. Otherwise, a well-meaning adult may spend time lecturing your youngster on "looking at me while I'm talking" (something that can be very difficult for the youngster to do).
  • The tendency to fixate on a particular narrow topic is one of the hallmarks of AS and HFA, and it can be annoying to those who must listen to incessant talk about the favorite topic every day. But, a consuming interest can also connect a youngster to schoolwork and social activities. In some cases, kids with AS and HFA can even turn their childhood fascination into a career or profession.
  • There are numerous books and websites dedicated to autism spectrum disorders. Do some research so that you better understand your youngster's challenges and the range of services in your school district and state.
  • The signs and symptoms of AS and HFA vary for each youngster, and these kids have a hard time explaining their behaviors and challenges. But, with time and patience, you'll learn which situations and environments may cause problems for your youngster and which coping strategies work. Keeping a diary and looking for patterns may help.
  • Maintain a consistent schedule whenever possible. If you have to introduce change, do so gradually.


More resources for parents of children and teens with High-Functioning Autism and Asperger's:

==> How To Prevent Meltdowns and Tantrums In Children With High-Functioning Autism and Asperger's

==> Parenting System that Significantly Reduces Defiant Behavior in Teens with Aspergers and High-Functioning Autism

==> Launching Adult Children with Asperger's and High-Functioning Autism: Guide for Parents Who Want to Promote Self-Reliance

==> Teaching Social Skills and Emotion Management to Children and Teens with Asperger's and High-Functioning Autism

==> Parenting Children and Teens with High-Functioning Autism: Comprehensive Handbook

==> Unraveling The Mystery Behind Asperger's and High-Functioning Autism: Audio Book


==> Parenting System that Reduces Problematic Behavior in Children with Asperger's and High-Functioning Autism

2.9.13

Making Sense of the DSM-5: "Severity Levels" of Autism

“My granddaughter (7yrs old) was just diagnosed with autism and level 1.5. What does that mean and what's the differences between that and aspergers?”

To answer this question, let’s first look at the new criteria for Autism as described in the DSM 5:

A. Persistent deficits in social communication and social interaction across multiple contexts, as manifested by the following, currently or by history):
  1. Deficits in social-emotional reciprocity, ranging, for example, from abnormal social approach and failure of normal back-and-forth conversation; to reduced sharing of interests, emotions, or affect; to failure to initiate or respond to social interactions.
  2. Deficits in nonverbal communicative behaviors used for social interaction, ranging, for example, from poorly integrated verbal and nonverbal communication; to abnormalities in eye contact and body language or deficits in understanding and use of gestures; to a total lack of facial expressions and nonverbal communication.
  3. Deficits in developing, maintaining, and understanding relationships, ranging, for example, from difficulties adjusting behavior to suit various social contexts; to difficulties in sharing imaginative play or in making friends; to absence of interest in peers.

B. Restricted, repetitive patterns of behavior, interests, or activities, as manifested by at least two of the following, currently or by history:
  1. Stereotyped or repetitive motor movements, use of objects, or speech (e.g., simple motor stereotypies, lining up toys or flipping objects, echolalia, idiosyncratic phrases).
  2. Insistence on sameness, inflexible adherence to routines, or ritualized patterns of verbal or nonverbal behavior (e.g., extreme distress at small changes, difficulties with transitions, rigid thinking patterns, greeting rituals, need to take same route or eat same food every day).
  3. Highly restricted, fixated interests that are abnormal in intensity or focus (e.g., strong attachment to or preoccupation with unusual objects, excessively circumscribed or perseverative interests).
  4. Hyper- or hypo-reactivity to sensory input or unusual interest in sensory aspects of the environment (e.g., apparent indifference to pain/temperature, adverse response to specific sounds or textures, excessive smelling or touching of objects, visual fascination with lights or movement).



C. Symptoms must be present in the early developmental period (but may not become fully manifest until social demands exceed limited capacities, or may be masked by learned strategies in later life).

D. Symptoms cause clinically significant impairment in social, occupational, or other important areas of current functioning.

E. These disturbances are not better explained by intellectual disability (intellectual developmental disorder) or global developmental delay. Intellectual disability and Autism spectrum disorder frequently co-occur; to make comorbid diagnoses of Autism spectrum disorder and intellectual disability, social communication should be below that expected for general developmental level.

The DSM 5 specifies the severity levels of Autism as follows:

Level 1: Requiring Support—
  • Social Communication: With supports in place, deficits in social communication cause noticeable impairments. Has difficulties initiating social interactions, and demonstrates clear examples of atypical or unsuccessful responses to social overtures of others. May appear to have decreased interest in social interactions.
  • Restricted Interests and Repetitive Behaviors: Rituals and repetitive behaviors (RRB’s) cause significant interference with functioning in one or more contexts. Resists attempts by others to interrupt RRB’s or to be redirected from fixated interest.

Level 2: Requiring Substantial Support—
  • Social Communication: Marked deficits in verbal and nonverbal social communication skills; social impairments apparent even with social supports in place; limited initiation of social interactions and reduced or abnormal response to social overtures from others.
  • Restricted Interests and Repetitive Behaviors: RRB’s and/or preoccupations or fixated interests appear frequently enough to be obvious to the casual observer and interfere with functioning in a variety of contexts. Distress or frustration is apparent when RRB’s are interrupted; difficult to redirect from fixated interest.

Level 3: Requiring Very Substantial Support—
  • Social Communication: Severe deficits in verbal and nonverbal social communication skills cause severe impairments in functioning; very limited initiation of social interactions and minimal response to social overtures from others.
  • Restricted Interests and Repetitive Behaviors: Preoccupations, fixated rituals and/or repetitive behaviors markedly interfere with functioning in all spheres. Marked distress when rituals or routines are interrupted; very difficult to redirect from fixated interest or returns to it quickly.

So as you can see, Level 1 would be considered high-functioning Autism. Disability will be common among children with Level 3 Autism and non-existent in Level 1 (where children currently diagnosed with Aspergers will be reclassified).




The new method for diagnosing Autism replaces the five prior diagnoses: Asperger Syndrome, Pervasive Developmental Disorder Not Otherwise Specified (PDD-NOS), Childhood Disintegrative Disorder, and Autistic Disorder. If a child has a pre-existing diagnosis of any of these disorders, he or she is automatically considered to have an Autism diagnosis.

Children who are being newly diagnosed (or re-evaluated) and do not fit into the new criteria for Autism may receive a new diagnosis called Social Communication Disorder. This appears to be an extremely mild version of Autism (the child does not have sensory issues or repetitive behaviors) and is similar in many ways to the old PDD-NOS.

The DSM-5 defines Autism as a single “spectrum disorder,” with a set of criteria describing symptoms in the areas of social communication, behavior, flexibility, and sensory sensitivity. If a child has symptoms in these areas, he or she will probably be diagnosed as “on the spectrum.” When a physician diagnoses a youngster with Autism, it's important to know the severity of the disorder. If the physician does give his/her opinion on the severity, it’s with the disclaimer that it’s only an opinion, not a medical diagnosis. Whether the opinion is that it's severe, or that it's mild, it has no bearing on the actual diagnosis. A youngster with Autism deemed as mild is just as autistic as one believed to be severe. The medical diagnosis for both is exactly the same.

Autistic kids have issues with social interactions, behavioral issues, restricted interests, self-stimulatory activities and sensory issues. So severity in each of these categories needs to be determined to assess severity as a whole. While the severity of Autism is not a diagnosis, physicians who specialize in Autism can tell where a youngster is in relation to the other kids they have treated. The same youngster will get different opinions of severity from different people. Since determining a “Level” is subjective and not a technical diagnosis, there is no right or wrong answer.

The three Autism “levels” raise many questions, for example:
  • Depression and anxiety are very common traits among children on the Autism Spectrum, and this can cause major challenges in typical settings. If a child is bright, verbal and academically capable – but moody and anxious, and therefore in need of significant support in order to function at school – where does he or she fit in?
  • Some children on the Autism Spectrum do fine at home, but need help in the classroom. Others do well in the classroom, but not at home (where there’s less structure). So, in which social settings do children at various levels require “support?”
  • Some autistic children have received adequate therapy to appear “close to normal” when interacting with adults – but have significant problems when playing/interacting with their friends. Others get along well with peers, but not adults (especially authority figures). What type of support do they need?

The severity of Autism changes not only day to day, but also situation to situation. For example, autistic kids may exhibit significant social deficits when trying to play with their peers on the playground -- but in the classroom, they may blend in perfectly with their peers. Autism severity is simply a place to start. It’s something to use to help the youngster make progress by getting more services and to help describe the youngster to therapists, teachers, etc. It’s just a snapshot, not something that reflects the future or the youngster in all situations.

Resources for parents of children and teens on the autism spectrum:
 
 

Sources:
  • American Psychiatric Association. (2000). Diagnostic and statistical manual of mental disorders (4th ed., text rev.). Washington, DC.
  • American Psychiatric Association. (2013). Diagnostic and statistical manual of mental disorders (5th ed.). Washington, DC.
 
 
Best comment: Thank you for the great explanations to the new DSM-5. I shared this on my FB page -- your blogs (and your book) are so helpful to me as the mom of a 15-year old Aspie. After reading this, I actually kind of like the new classification. My son wasn't "officially" diagnosed with high-functioning autism until he was 14, because prior to that he had been just diagnosed as ADD, bipolar, and OCD, although they did diagnose correctly the sensory processing disorder when he was 7 (with "borderline Aspergers" at that time as well). He began ABA therapy for the first time just 8 months ago, and started at a non-public school (specifically for kids with autism) five months ago. Between those two major changes in his life, we have seen remarkable improvements in his daily functioning. So it seems to me that it is possible to transition from one level to another due to outside influences, don't you think? Thank you again for such a great post!

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