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Shutdowns in Kids on the Autism Spectrum

Guidelines for Collaborating with Your Child’s School

“I’ve begged my son's school to test him for autism. I’ve had nine meetings with his principal, counselors, and teachers. They insist nothing is wrong with him except he needs more discipline, because he is ‘extremely intelligent’. Even though he has run away from school three times, they still don’t think anything is wrong. It's such a shame that these years of school are being wasted because the school doesn’t want to perform a test. How can I get them to change their mind about this?”

In short, you will need to be both a diplomat and an advocate. Being an advocate for a youngster with ASD Level 1, or High-Functioning Autism (HFA), can be tricky. Parents need exceptional communication and negotiation skills – and the confidence to support their youngster’s right to a proper education. Below are some very crucial tips to accomplish this goal in a tactful fashion:

1. Allow school officials to explain their opinions. If parents don’t understand what someone is saying, they should ask for clarification. For example, “What I hear you saying is…” can help ensure that both parties are on the same page.

2. Think in terms of “life success” rather than “school success.” Success in life (rather than just school success) depends not on academics, but on the willingness to ask for - and accept help, the determination to keep trying in spite of challenges, the ability to form healthy relationships with others, a healthy sense of self, and other qualities that are not as easy to quantify as grades and SAT scores. By focusing on these broad skills, parents can help give their youngster a huge leg-up in life.

3. Before any and all meetings, parents should write down what they want to accomplish. They can decide what is most important, and what they are willing to negotiate.



4. Parents can do their own research and keep abreast of new developments in various programs, therapies, and educational techniques for kids on the autism spectrum. Parents may be tempted to look to others (e.g., teachers, therapists, doctors, etc.) for solutions, especially at first. But parents are the foremost expert on their HFA youngster. Thus, they can take charge when it comes to finding the tools their child needs in order to learn.

5. Moms and dads of kids on the spectrum sometimes make the mistake of investing all of their time and energy into the school as the primary solution for their youngster’s disorder. Parents need to recognize that the school situation will never be perfect. Limited funding and too many regulations mean that the accommodations the “special needs” student receives may not be exactly what parents envision for him or her. This, in turn, may cause frustration and stress in the parent. So, in a nutshell, don’t have unrealistic expectations up front.
 
==> How to Prevent Meltdowns and Tantrums in Children with Autism Spectrum Disorder

6. Parents have the advantage of not being “part of the system” and may have fresh ideas. They can do their research and find examples of what other schools have done. So, offer some solutions based on the success of other schools.

7. Focus on strengths, not just weaknesses. Your youngster is not defined by his or her disorder. Focus on his or her gifts and talents. Nurture the activities where he or she excels, and make plenty of time for them.

8. Remember that the school system is dealing with a large number of kids; however, you are only concerned with YOUR “special needs” youngster. Help the meeting stay focused on him or her. Mention your youngster’s name often, resist the urge to fight larger battles, and don’t drift into generalizations.

9. Parents can remind themselves that everyone faces obstacles. It’s up to parents to teach their youngster how to deal with those obstacles without becoming discouraged or overwhelmed. Parents should not let the tests, endless paperwork, and school bureaucracy to distract them from what’s really important – giving their youngster plenty of emotional and moral support.

10. Remember that the school will be only one part of the solution for your youngster. So, leave some of the stress behind. Your attitude, support, encouragement, and optimism will have the most lasting impact on your youngster.
 
==> Parenting System that Reduces Defiant Behavior in Teens with Autism Spectrum Disorder

11. Stay composed and positive during meetings. The parent should try to go into the meeting assuming that everyone wants to help. If the parent says something she regrets, she can simply apologize and try to get back on track. In other words, try to stay on the good side of school officials, because they can be a big help – or a big hindrance, depending on how they feel about the parent’s attitude. This is not fair, and it’s not right. But, unfortunately, it’s the reality in some school systems.

12. Remember that the parent’s influence outweighs all others. The HFA youngster will almost always follow his or her parent’s lead. If parents approach learning challenges with a sense of humor, optimism, and hard work, their youngster will embrace their perspective (or at least see the challenges as a speed bump rather than a roadblock). Parents need to focus their energy on learning what works for their youngster – and implementing it the best they can.

13. Identify how your HFA youngster learns best – and share this information with his or her teacher(s). Once parents have figured out how their child learns best, they can take steps to make sure that type of learning is reinforced in the classroom and with homework. Let’s look at how to determine what type of learner your youngster is:
  • If your youngster is an auditory learner, he or she: (a) may love music, languages, and being on stage; (b) learns best by listening; (c) does well in lecture-based learning environments and on oral reports and tests; and (d) benefits from classroom discussions, spoken directions, and study groups.
  • If your youngster is a visual learner, he or she: (a) benefits from written notes, directions, diagrams, charts, maps, and pictures; (b) does well when material is presented and tested visually, not verbally; (c) learns best by seeing or reading; (d) may love to draw, read, and write; and (e) is probably a good speller.
  • If your youngster is a kinesthetic learner, he or she: (a) benefits from hands-on activities, lab classes, props, skits, and field trips; (b) does well when he or she can move, touch, explore, and create in order to learn; (c) learns best by doing and moving; and (d) may love sports, drama, dance, martial arts, and arts and crafts.

14. Lastly, write a respectful, business-like letter to the school that describes the issues and your suggested remedy. Ask what the school plans to do for your youngster. If you don’t get an acceptable reply, consult with an attorney who has expertise in special education matters. CLICK HERE for attorneys in any state.

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

==> Videos for Parents of Children and Teens with ASD
 
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 BEST COMMENT:

Do you want to start an IEP process? Do you need accommodations for your son? You can request a comprehensive eval in writing. Many parents I know have gone the private insurance route and done a full psych/educational evaluation and then scheduled a meeting for them to review the results. But of course you can ask the school to do the psych testing--it just is a longer process. However your child has legal rights to receive any accomodations needed to succeed in school. Send a formal email to the principal, teacher, and the ESE person for the school. 
 
The schools are not required to accept any outside evaluation. But it will signal a necessary start to meeting for disability testing. Everything should be in writing. Since a formal request, in writing, is required for the school district to evaluate your child to determine if they are a child with a disability in need of special education and related services. That starts the legal clock running. The diagnosis itself does not guarantee an IEP (although it may get you a 504 with accommodations.) You will need to show that special education required. 
 
Do not let the school limit their consideration of need to academics - as other needs are direct instruction in social communication skills, executive functioning/organizational skills, self-advocacy skills, etc. are all valid "special education" needs. Developing appropriate teacher-student relationships, peer-to-peer relationships, being able to participate fully in extracurricular activities, not being bullied or shunned, etc. are all legitimate areas of special education need. 
 
Also, depending on the state and county, there are services available for free advocacy help where these advocates attend all meetings with the parent and help to move things along by liaisoning with the district. I myself have had the help of an educational advocate. Call your county district school board and ask for a list of advocates you can get help with. Sometimes going over the school's head and speaking with the county makes sense....here in my county they actually have an autism unit...someone who comes into the schools and helps the parent navigate through. And of course, you can go to the superintendent. Hope this helps.

The Blessings of Aspergers and High-Functioning Autism

COMMENTS & QUESTIONS [for Dec., 2017]



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

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Hi Mark,

You have been in touch with my wife, Karen, as we've gotten and are going through your course on Parenting/Launching Asberber Teens.  I had a question for your input as I'm looking for a check on how I respond to our son on a current concern.

This is our son's senior year in high school, but he has been able to take college courses this year at the local extension of BGSU.  It has been very hard on him, and he has been bombing out.  I'm thinking he is struggling among other things with different professors with different expectations and time management of projects all combined with currently not having much motivation as he doesn't have a clear picture of career goals, therefore doesn't see the value of the schooling.  (We had homeschooled him through 10th grade, which allowed us to naturally give him a much more consistent school experience, and he did well - with a lot of work on our side and his.)

The issue I am facing now is that it has just come out that he failed his final speech for communication class because he didn't show up, and therefore failed the course.

Further info:  He started the semester with 5 courses, and we immediately dropped one course that he felt would be too hard.  Then later, it came out that he was failing two other courses, so these were dropped even a little late in the semester, leaving him with just art and communications, which he felt he could handle.

Then with about 4 weeks left, it came out that he was slightly failing communications, and there was only one final speech left for him to bring up his grade.  So I had him focus on that project for weeks, knowing it was his key to pass.  I had him go to the prof and talk it over, and helped him to space out the preparations and prioritize it.  Towards the end, we offered for him to practice the speech with us, but he declined. 

After his speech day last week, I asked him how it went, and he said OK.  Just today it came out that he skipped the class and never gave the speech, and so got a 0 and has failed the class.

Soon he will be home and I will be debriefing this with him, and I thought I would welcome any input from you to factor into how I handle this.  He is not at all shy, and talks very freely, so he is not the introvert that is simply terrified to speak in public.  There's something else apparently.

Thanks for any thoughts you might have.

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Hi Mark ~

My name is Jenniffer. I have a 15 yr. old son who has not been diagnosed professionally but displays all the signs of living with Asperger’s. He is high functioning.
We had him in public school when he was younger and pulled him out to homeschool when he was in the third grade. He was 8. We homeschooled him until the 8th grade, at which time he asked if he could go back. We agreed and he had a good year. We live in a small town and the grades are combined and as a result he became ‘friends’ with more of his 7th grade counterparts. When it came time for him to move up to high school he didn’t want to go without his ‘friends’. He stayed home for 9th. He is now back in school and those same ‘friends’ told him, within 2 months of starting, that they don’t want to hang out with him any longer.
Around the same time period he came to us and told us that he believes he has gender disphoria. He has never displayed any of the traits or behaviors that would have ever led us to come to that conclusion about him.
He is 6’1 and 220lbs. Before stating school again he was talking about wanting to lift weights and lose a little weight. He would help his dad with outside chores and would comment about how he liked that he was strong enough to help.
Since telling us about his thoughts he has been more anxious and depressed. But, it is not consistent.
 He told us a couple of days ago that he’s also been having nightmares but he can’t or won’t tell us what they are about.
He also has stopped doing his homework. He’s become a C student with one D and because his test scores are so high he’s brought attention to himself. He should be an A-B student. After the holidays the school wants to have a meeting with us to discuss how to get him ‘back on track’. He had a meeting with the school counselor about a week ago and told her he was only at school for socializing and doesn’t care about his grades or homework. He also told her that we are Christians and read the Bible every night and that that is more important than homework. An administrator called my husband, at that point, to see if Caleb had a safe place to do his homework and ‘is it against our religion for him to do homework?’
 We asked Caleb about the meeting and he was baffled that they would ‘extrapolate’ (his word 😏) that from what he told the counselor. We aren’t hopeful...
We believe it’s psychological. He doesn’t buy it, completely. He’s trying to figure it out and he says that if he could change it he would but ‘I was born this way’ and there’s nothing I can do to change it!
Through our own research we have started looking into possibly getting an FMRI. We aren’t sure that a diagnosis, at this point, would help. And we’ve been told because of his age it is going to be even more difficult to get.
I am going to purchase your ebook and am hopeful it will help us to understand him and help him understand himself.

My question is, do you hear about this often? Gender disphoria? And is there a correlation, in your opinion, with Asperger’s? We have been researching so much and have read that there is a belief that there is but we haven’t actually talked to anybody. His pediatrician has no experience with ASD or gender disphoria and immediately wanted us to go to counseling, which is fine except that the counselor was under the impression that we were interested in transitioning, before even talking with us. We are not interested in helping him transition. We want to help him understand and accept himself as a truly is. Even though, right now, he doesn’t see how that’s possible.
We believe because he is still going through puberty, which when he first came to us he expressed his desire to get on puberty blockers, will grow into his body to become more comfortable and confident in that fact.

I thank you for taking the time to read my email. I want to understand Caleb and how he thinks so that I can talk with him and not frustrate him or me. And right now that seems to be the only thing that’s happening...

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Hello Mark, (from Sunny South Africa)

I have learned sooooo much from your videos on YouTube.  I’m a subscriber!!

I have a 9 year old son, Reinhardt, with Aspergers (diagnosed December 2015).  His outbursts is not a severe as other children I’ve seen on YouTube, and the teachers say that he is overall very sweet and obedient.  He copes in school, struggle with language and reading but excels in math.  He is a born drummer – loves keeping a rhythm on any surface and we support that – that’s his thing… as well as running and dancing…

What we do struggle with though is getting the little guy to do things he is “supposed” to do, to motivate him to for instance to do homework “after homework time” (in his mind) if he is not done with the day’s homework.  Example: He had extra classes on Tuesdays, and then in the afternoon he does cross country (loves running) so on Tuesdays, there were very little time for homework.  And if it’s after a certain time in the day, he refuses to do homework, “because it’s dark out”.  And whatever you say, you can even make him sit behind his book and place the pencil in his hand, he will not do a stich of work. 

Same with bath time. He will not bath if the sun is still out – he bathes after the sun is down. 

I understand keeping to a routine and how their thought patterns work, but is there a way to motivate a child with Asperger’s to do things he does not want to do?  Sometimes you need them to take a bath earlier in order to go to a function, or things does not run according to plan and homework or other tasks needs to move to a different time slot… we really struggle with this.  He is obsessed with time an when things must and wil happen:  “Mom, when are you dishing up – you are late (5min past normal dinner time)… or how late will “this” happen, how many days until X happens…. Typical conversations:  What is the date today (although he already knows) and what date are we going to grandma – oh, ok, 6 days… and then this will repeat every day (count down) until the day we have to travel, and then he will start with the hours and minutes… how long until we leave – I’ll say 3 hours.  Him: but what time is it now (7:04) – what time will we leave (10:00).  No mommy, not 3 hours.  Two hours and 56 minutes… ha-ha-ha. 

It is a struggle some days, but most days this is what keeps us on our toes. Talking, discussing, convincing (NOT) and trying to keep everything together, because I have an (almost) 12 year old (sensitive/sweet) daughter – hitting the teens – and balancing her needs with the constant need from her brother… shew, some days are just….  I don’t know….

Maybe there is a video I’ve missed that talks about my questions that you can just refer me to.  Would love to hear from you. 

Thank you for the wonderful work you do for us!!!  We do not have a big Asperger’s support where we live – everything we need to do (like specialists, etc) are about 1½ to 2 hours’ drive away.  Makes it very difficult. In our town I know of only 2 other families with children with Aspergers, and I’m sure a lot of misdiagnosed kids around us…

I hope to hear from you soon, but if I don’t, have a Merry Christmas and a very prosperous 2018 – may you be blessed for helping us understand our children!!

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Mr. Hutten,

Believe it or not, we are working through the parenting course but it's going slower than the needs at home arise.  Here's the deal -- Caleb is only 3 courses away from high school graduation.  Less than 3 really because the math courses (Algebra 2 and Business Math) are in process of being finished - he's retaking failed tests to complete the two math courses.  The 3rd course is English.  We mentioned the possibility of withdrawing him from high school and letting him get his GED, but the teacher begged us not to withdraw him since he is so CLOSE to graduating.  My husband Kevin also feels he is so close and maybe it's worth just keeping on with high school.  We have had him withdraw from the college plus program though.

Background info: he is enrolled at a public charter school where the kids can work at home or at the library or at the school itself.  We chose this method to give him more freedom to work where it's easier to concentrate (i.e. not a classroom).  HOWEVER, it has been more trouble than benefit  because he was given a chrome book on which to do his work and he ended up on pornographic sites, gay chat group rooms, etc.  Whatever comes into his mind as a curiosity, he researches with infinite focus and persistence.  We ended up talking to the teacher about it after he put his sister in danger by telling a perverted stranger on Facebook to "check out his sister".  We had him delete his FB account and put strict restrictions on him last year.  The school took the computer back and he worked at the library... but that also gave him access to inappropriate sites.  He was uploading inappropriate photos of himself to homosexual sites after he was curious about that lifestyle and found it interesting.  Evidently the library workers do not keep tabs on what goes on with the computers.  On top of that, he has a fixation on serial killers now, and it worries us that he has access to books and online materials that might jump start some kind of violence/downward turn.  Right now, he is not violent apart from his anger which usually is directed toward himself of yelling at his same-age sister (both adopted at the same time from Russia).  Your material mentions that immature aspergers really should be careful what they see because they can't differentiate between reality and imagination.  THIS is what we are worried about.  The teacher told us to let him go to the library and let him carry the consequences of his behavior/actions should he go astray.  While that sounds great, we have 3 other children that he brings his perversions home to (or sends them out to perversions online).  We have also made it that he is not to take any pictures of siblings at all because he might send them to inappropriate sites.  This is not a nice way to live.

So for him to work at home, it would need to be quiet - but we have a 4 year old running around and just living.  The 4 year old is not quiet, creating a lot of panic and anger in Caleb that he can't focus.  His outbursts are hard to abide.  But he has broken all our trust of what he is doing outside the home when he says he is doing school.  Your materials talk about trusting our child but how do you build trust with someone who is so impulsive and not interested in exercising any self control AND who has really whole heartedly gone to the Dark Side and then talks about it at home without filter and has put his sister at risk in the past (I'd like to believe he has learned from that - but he has yet to regain my trust).

Please, help.  I am so tired of living like this.

PS  One reason it's going slower than we would like is because for safety issues, we have our computer out in the main room.  We usually do the parenting course when we send everyone to their rooms for the evening - when we get regain the quiet of "Grand Central Station".   And some nights it is not conducive to learning/study depending on the chaos of the house.

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Hello Mark.  I am a 47 year old mother of two. My son is 22 and my daughter is 18. My husband died in 2014 after a 4 year bout with cancer.
My two kids couldn't be more different. While my son is easy-going and compassionate, my daughter is none of those. I read about your program and I'm wondering if at 18 she is "too far gone". She is also at college so most of my interaction with her is via text or cell phone. She does come home on breaks and those have been trying it best. She absolutely hates my boyfriend and makes no effort to get along. 
She has been in counseling and seeing psychiatrist for medication for a few years. We have gone from diagnosis to diagnosis and nothing seems to really work. I honestly think it comes down to her almost narcissistic tendencies. And I think the way we parented her from the beginning has enabled that.

I guess my question for you is will your program work to help guide me to parent her better now.  To end this constant feeling of dread that a good mood will change and everyone will be miserable.

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Hi.  My son was diagnosed with Aspergers at the  age of 30.  He's now almost 37.  I have been to a few conferences and read books and articles about parenting children with ASD but so much of it has to do with children or teens.  I feel so alone with my struggle to help my son.  I even went to a therapist for over a year, with my son, to get some answers on how to navigate my way through his meltdowns, etc.  This was someone who was supposed to have some knowledge of ASD and was recommended by the support group for adult aspies in Portland Maine.  I got no advice as to whether or not my current strategies help or harm.  Do you have any suggestions for me as to where I might get some answers or support?  I would appreciate any help I can get.  Thanks

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Mark,

Happy New Year. I am writing at this time, I imagine, because it is the holiday season. I am married to a man with Aspergers Syndrome, and the holidays have had an extra layer of loneliness and output of energy on my part. This has led me to seeking support, specifically with a neurotypical and high functioning autistic relationship dynamic. Of course, I come with my own set of challenges, emotionally and neurologically. But, they deal with... emotion.

I did not realize my husband had this challenge until the past year. I was very consumed with his daughter, who is also on the spectrum, and trying to learn, or self-teach strategies of parenting her. We have complexities of each of us coming into this marriage, with two children each, after divorces. Our ex-spouses are very challenging and my husband does not take ownership in dealings with his ex-wife, often unintentionally, but very painfully, “throwing me under the bus”. I am seen as the problem by many and it is a large burden, especially when I have committed myself so fully, with so much thought, and compassion, to others.

We currently live in two houses, due to the extreme conflict with his ex-wife, and his inability or unwillingness to reduce that conflict or set a boundary. I “broke” this past year and found myself alone and patterns of passive aggressiveness in my husband’s dealings with the situation. The two houses sets up even more loneliness opportunity, without the minimum of daily contact. I am scared because I think things could improve, in a matter of fact way, but I am exhausted from being hurt and forgotten. I have broken trust from discussions leading to commitments and those important commitments not taking place. I feel I don’t have energy left over for me and my self care. I find myself wanting to be alone, and not participate in activities or a life with my husband and his kids because it leads to such strong feelings of being used, taken advantage of, and broken trust.

We do have many strengths as a couple, and a blended family. However, there are issues that need therapy and structural change in order for things to function in a way that I can find peace and calm.

I am wondering if you do retreat type therapy. We happen to be in Indiana, in New Albany. A long drive. I will start with your ebook, but I find it terrifying. It feels like more work on my part (though there are potential great rewards), and I need a human, and validation and connection from a person, as I continue through this journey. Typical therapy is not going to work. I also believe a third party helps individuals to feel “ heard “ and a place in which accountability is expected.

Are there any practioners with this specialty in Southern Indiana? You are my first step in attempting to remain in our marriage, to which we are both committed, but I find exceedingly draining.

Thank you for your time and consideration.

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My son broke the rules again and smoked weed, tested positive after a party he went to, I took away his phone and I Pad, he did not fight me, I went through the Snapchat and Instagram posts and realized that almost half of the kids in his school are posting themselves, while doing drugs.

Many of those kids are put on pedestals by teachers, parents and principal for great accomplishments, the kids are part of SkillsUSA and they are high ranking officers for SkillsUSA and straight A students.
They are champions in world robotics and so on, being followed by a lot of kids worldwide, and there they are on snapchat, smoking big huge joints and pipes.
I was in shock, and for the last week I have been looking at all those posts and reading them.

When confronting and talking to my 15 year old, he did not deny smoking it, he did not lie about his friends doing it.

Here is what he said: "Because I am upsetting you, I might consider not doing it until I am 18 when I will be moving out. Not sure what your problem is, it is good for us, we do better in school, and you all said follow Bryce and be like him. I don't understand your problem with it, it will become legal in 2 days, yes I know I am not 21, but look at all the scientific proof."

He knows 10 times more about scientific proof of it being good, then I can pull up what it does bad.
He is 15 he is in 10th grade and 1/3 done of his college classes.
He never ever gave me any problems, never talked back, never comes home late, never did ever anything to upset me in any way.
That is why I am lost right now, it all changed now. All the things in your book, having dinner at home, we do and have been doing 7 days a week, he has chores,
he earns his allowance, and loses it if he does not follow through, he works for me and is on 1099 MISC, he saves his money for a new laptop, he follows his dreams with photography and take college classes, and now, the last 4 month he puts his friends first, everything I say, reflects he can care less, and they are first, he believes them more than us, and he wants to do what they do.
Do the this unique situation with the kids involved, I really need guidance, I have some of the kids filmed, and I know, those kids have no parents involved, because one of them owns his own house already and lives by himself and that is where they always are. Please advise, thank you so much.

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