Therapeutic school for extremely defiant Asperger 13yo

Hi All,

I am at the rope’s end.

My 13 year old Asperger son has become extremely defiant, aggravated and acted like he has regressed back to 3 years old possibly due to puberty since few months ago.

We had to call sheriff due to safety and he had to be hospitalized for 5150 a month ago.  After coming home with some medication adjustment, outbursts and meltdowns are still occuring frequently.  Trigger of these problems are always controlled computer time (2/3 hrs weekday/weekend.)  I also felt like he was agitated by a certain war game that he is playing all the time.

He has high IQ (144).  Used to love reading, designing but it’s all gone now.  He seems to have regressed and cared only about that computer.  When he is not on computer, he is on his phone with Instagram or TV on crime series.

I am truly desperate and feeling like my child is slipping away from me turning into someone totally unrecognizable.  Medication didn’t help.  He wouldn’t talk to therapist.  He didn’t care how people perceive him or school rules.  I am losing him.

Would a RTC be helpful for a teen like him?  There seems to be underlying medical issues that we don’t understand.  Meanwhile, home has turned into some place pathetic and we felt like we are being terrorized all the time.

God (and every one) please help me!

Parent Replies

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My son had a similar situation. Research PANDAS/PANS. This is when an infection (virus, strep, Lyme, mold, or other issue) cause major behavioral regression. You may need to find a doctor knowledgeable about PANS/PANDAS to help you. My son is doing much better since getting a diagnosis! 

There’s a book called “A Regular Guy” that I think you  should read.    It’s written by a woman who  raised three boys in the bay area with an older son with similar issueIt talks about the process you went through and finding a therapeutic school,  among her other challenges.  I know there are consultants who help with this process,  I don’t know the names of the consultants but  hopefully someone else will. I think you would find this book very helpful and I believe you can order it on Amazon the author  is Laura Shumaker.  I’m  i’m sure this time is incredibly difficult, good luck!

I'm so sorry you are going through this, I too lost my son to ASD and related illnesses when he was 13. He has been in residential treatment for almost 3 years and is returning home to live this week.

There is a support group called Willows in the Wind that is very helpful for parents considering or have children in residential treatment.

My son has been most recently in treatment at Heritage in Provo, Utah, which specializes in ASD and mood disorders. It's an excellent program and facility, although students tend to have more success at Heritage when it's used as a step-down and not a first treatment facility.

I've been able to get through this (barely) with having my husband on-board and seeing the same things I do, an excellent education attorney, cooperation after grievance with Kaiser, a free course at DREDF to learn my rights, the Wilows in the Wind support group, supportive friends and family members, huge sums of available money while working through services with our school district, tons of organized documentation, and never-ending tenacity. It's very hard. Very very hard. Yet do-able.

Best wishes, hang in there, and never ever stop fighting for your child.

I feel for you deeply. My best friend just went through a huge ordeal with her son, and found out something incredible: if the public school system cannot educate your special needs child they are obligated to pay for a place that can. (They really don't want you to know this, and will throw up every obstacle in the world before they capitulate, but it is, in fact, their legal duty.) My friend's  son is now at a therapeutic boarding school in Utah, where they address meds as well as behavior. It's actually a nice facility, not one of those wilderness tough love  places. There are probably residential schools that deal specifially with Aspergers. If you PM me I'll get you the name of the advocate she hired, worth every penny, to bring this about.

Like you, my friend was terrorized by her son and had to call 911 a couple of times. There is still a loving little boy inside there somewhere, but he needs help to recover that person.

Meanwhile, for the time being, he is gone. She has a life. She can breathe. And sleep at night knowing he's getting the help he needs.

If you PM me I'll find out advocate's contact information.

Hello, so sorry to hear what your family is going through!  My first thought is to get the media addiction under control.  Remove phone, tv, game console, & computer.  I am sure that this will cause a major blowout, so be prepared.  Maybe another 911 call will be necessary and even hospitalization.

Then create an agreement where he initially gets one tech item back for an hour a day, as long as he does not blow out and turns it back in to parent after one hour.  In return, for example, he has to read 2 books a week, volunteer 3 times a week, and join some daily outdoor activity (you make up a structure that makes sense for your family).  In addition, he must attend therapy weekly in order to use the tech item at all that week

My thought is that he is not parent - able right now, because he thinks he has no restrictions.  If you put the restrictions on him, and let him operate in a structure where you set the rules, he may go back to being parent - able.  I would definitely not allow as much access to all of his tech as he has had up to now.  

Best of luck!

Hi- I don't know anything about residential treatment, but I can completely relate to your situation.  My Aspergers son is 14, and the super challenging behaviors started right about puberty ( well, he's always been a bit challenging, but, things really amped up around 12 1/2 or 13).  My son, too, used to have interests like drawing (cartooning) and reading, but has become increasingly fixated on video games. We try to exert a lot of control in the house on his access to screens and games and internet, but it is increasingly challenging (and a part-time job for me) to stay ahead of him-- screens are everywhere and the internet is a basic tool for .   He too was hospitalized for suicidal ideation about a year ago.  He too is very defiant and angry when we have to enforce the limits (or just make any requests of him)-- it has never gotten any easier, despite the fact that the rules and expectations have always been in place.   He also has a lot of anxiety and gets very "stuck" on things-- like, perceived (and real) slights, harassing us about whether he's earned his next screen time allotment. Last night he went on a very loud 30-40 tirade (with really foul language) about how awful we all are and how much he hates his disability ( he thinks we clamp down on him hard because of the autism), how everyone else's lives are perfect compared to his -- I think everyone in the neighborhood heard.  And I so worry about his younger brother who has to endure all this, too.  Anyway, all that is to say that I don't have the answers, but I can completely relate. Feel free to reach out to me directly if you need someone to talk to.  It is really hard.  

This is in follow-up to the anonymous poster who addressed the media and parenting issue.  I'd like you to know this is not your fault and you likely cannot effectively set up structures and restrictions to control your son's behavior at all, or if so until significant therapeutic work is done. Yours is not a "normal" situation (although there is a large community of us dealing with similar situations - build your support network).  

I empathize as my situation is also not normal, with significant underlaying physical and mental health issues that are very complex, difficult to understand, and even more difficult to treat and manage.  Whatever path lead to the current situation, it sounds very difficult and my heart goes out to you.  Your child may need significant support that you cannot provide, and it sounds like you and the family could use a break - time to heal and fortify.

I second the recommendation to reach out to Willows in the Wind.  I've found the leader, Jan Rao, and the group to be invaluable.  There you can get recommendations for educational consultants who can help assess whether, and if so which, treatment options are appropriate, as well as amazing support and community through this very difficult time.

Know that you are not alone, resources are out there, and do one thing to be kind to yourself today.