Teens & Preteens with High Functioning Autism

Parent Q&A

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  • ISO Young Adult Group ASD and/or Anxiety

    (2 replies)

    My son is 19yo, on the spectrum and 2e. He moved to Danville last August to live with his grandparents and attend Berkeley City College. Making new friends has been hard and while he has strong family support, would really benefit from knowing others his age who share his struggles and/or gifts. He's continued talk therapy with his therapist in Chicago and has a local psychiatrist. Still being newish to the area, we're just not sure where to start finding something for teens/young adults. His interests include music (he’s gifted in this way, specifically vocals, guitar and drums in rock, metal and punk genres) and liberal politics. We appreciate any suggestions you might have.

    I wonder whether he’d consider Diablo Valley College instead of BCC. I think it might be more conducive to making friends. It has more student life, and it is closer to Danville, so it would be easier to meet up with anyone he did meet.  

    Danville is far from Berkeley. Community College. Most of the kids don't drive, and Danville is tough to get to without a car. His grandparents might want to see which community college people in that area go to -- there are also some satellite campuses for Cal State East Bay. Alternatively, maybe you could help him find a place to live in Berkeley or Oakland, where there are many other young people who share his interests.

    Reply now »
  • ISO ASD therapy for newly-diagnosed teen

    (3 replies)

    I’m hoping someone here can help us. My 17-year-old son was recently diagnosed with Autism Spectrum Disorder level 1 (aka “high functioning”), after a months-long process using our Kaiser plan and the Behavioral Providers Health Network. All of his assessments (three now) were done online, and the process took many months. It’s now been three months since he received the diagnosis and we still don’t have a treatment provider — the best BHPN seems to be able to offer is online therapy with an org that is located 100 miles away! 

    Our son has only one more year with us and he is struggling mightily. We need to find him, ideally, a peer treatment group that meets regularly in person, within ten miles or so of Berkeley/El Cerrito, as well as a therapist to work with us all as a family. Asap. At this point we are willing to pay out of pocket - Kaiser is failing us. I would be grateful for any referrals!

    Try Dr. Ari Oklan. He's a psychologist who has been helpful to us for similar ASD issues with our teen son. He does not take insurance (does a superbill you can submit yourself to insurance co.) but when we were looking we finally gave up on that. Also not sure if he's taking new clients right now, but check and find out. www.drarioklan.com

    We have also been struggling with Kaiser and BHPN about getting direct treatment for our son who was diagnosed with ASD. A parent educator at Stanford ESPA mentioned we might check with his pediatrician about possible Oppositional Defiant Disorder, and this got us a referral to Kaiser child psychiatry. Apparently they do have a special department for ASD and are opening up for in-person treatment, including family therapy. Generally speaking we have had better experience working with Kaiser providers directly than with BHPN. I hope this helps!

    Hi, I suggest you join the asnld-parent- support Google group. It is a local group of parents that meet monthly and exchange support for kids with a similar profile. My son was diagnosed with ASD at 18 and this group has been incredibly helpful with all kinds of resources. DBT was very helpful for my kid- we used Clearwater clinic. It’s a lot to navigate. Feel free to reach out if you think I can be of further help.

    Reply now »
  • 13-year-old diagnosed with ASD, now what?

    (5 replies)

    I'm at a loss for what to do next. My 13-year-old son was recently diagnosed as being on the autism spectrum as well as having executive functioning challenges and slow processing speed. We initially had him assessed NOT because we suspected ASD; rather he was exhibiting some strange behaviors more closely associated with OCD, depression, and anxiety that we thought were exacerbated by Covid-19. At first, we were shocked by this diagnosis but now as I become more familiar with ASD, I've learned that no two ASD people are alike and now his diagnosis makes more sense. The place that did the assessment recommended we have him on a 504 plan at school to give him more time for taking tests, put him near the front of the classroom, etc. They also recommended ABA therapy focused on social skills. However, my son is very resistant to all of this. He does not want to get special treatment at school and is one who likes to blend into the crowd, so much so, that he wears a hoodie everywhere. His grades are ok, but as he goes to high school next year, I know things will get harder. He has a good group of friends but he spends most of his time online gaming with them; they don't hang out very much after school in each other's homes. When he games with them, rules are clearer and his self-esteem gets a boost since he's good at gaming. But other than that, he has no interest in anything else. He just started therapy for social anxiety (set up b/4 the ASD diagnosis). Is there anything else you'd recommend? Summer camp for autistic kids to build social skills? I appreciate that he's different and don't want to mold him into something he's not, but also don't want him to struggle or be misunderstood. Thank you for sharing any experiences you might have with this and what helped/didn't help.

    Hello - my son has a very similar profile. I recommend sending him to summer camp such as camp Galileo which offers some wonderful programs that helped my son transition away from gaming to other interests.Also I highly recommend taking your son on outings that help him expand his interests and develop flexibility. My son fought this but grew to love our adventures camping and exploring the woods and now he is grateful that I pushed him to do it. Children on the spectrum come with many challenges but also great strengths. If you can stay attuned to your son and help him develop his areas of strength, that will build his self esteem. Good luck! 

    Hi, I'm sorry I don't have any advice to offer, but want to reach out because your situation is identical to ours.  My son is now 14 (8th grade) and was also finally diagnosed with ASD just before he turned 13.  His struggles are identical to your son's and he is extremely resistant to any types of therapies, etc. It would be great if we could at least meet for mutual support - and maybe our sons might hit it off somehow too.  We've been struggling to find him peers/friends who understand his life experience better than his neurotypical classmates that our son tends to emulate in order to appear like them.

    I don't know if there's a way for the moderator to provide you with my contact info, or if there's another way to connect.  I guess I'll have to see what comes of this.  In any case, I wish you the best of luck and will also look for responses from other group members here.

    My family is in the same situation, except that I have a girl and I suspected ASD and her anxiety is worse. Whoa is it hard to start on this journey in the teen years.

    So far, all the best things I've found have streamed out of Autistic Self-Advocacy Network. They have a great short book called "Start Here" that I recommend highly for you and for him.

    He is the same kid he's always been and that's OK. Beware of ABA, but there are other possibilities out there. Also, don't discount his interest in gaming. That may just be his thing, and if so, he needs it. 

    Hi- My son was diagnosed with ASD at the beginning of his senior year in high school. His profile is different from your son's in that he wanted the diagnosis to understand himself better after being in the mental health system for years with other diagnoses and treatment that was only moderately helpful. He already had accommodations due to an anxiety diagnosis ( extended time and a few other things) that allowed him to be successful in high school and he is now enrolled at UC Berkeley and still has his accommodations and support from the Department of Rehabilitation as well as support from the disability office etc. My point is that the 504 plan will help your son be more successful in school and open up possibilities for the future. Ideally, the people who did the assessments would have been able to talk with him about his diagnoses in a way that felt empowering but since it sounds like that didn't happen perhaps you can find an ed. therapist or maybe someone at his school who can reframe it for him. I am also a teacher and strongly believe that teachers do a much better job accommodating students when we have the information about their learning profile, areas they need support etc. Good luck, it is a lot to navigate. 

    You are asking great questions! My child has an almost identical arc to diagnosis of ASD at 13 and then refusing almost any assistance related to ASD/executive function/slow processing. I have found the diagnosis to be useful for me — I had never understood my child, and now I think I really have made progress. 
    The most helpful parts of the 504 were:

    —limiting busy work (repetitive problems to demonstrate understanding), especially in math

    — matching done by teacher with high emotional IQ and tolerant kids for any group projects

    — recognition by teachers that defiant behavior or shutting down is a sign of my child’s rigidity. He gets stuck when things “don’t make sense” and then can’t move on without 1:1 assistance

    feel free to contact me!

  • I’m looking for suggestions on how to help a young adult with high-functioning autism. My daughter (I’ll call her “Beth”) was diagnosed with ASD in 10th grade. By the time she was diagnosed there weren’t many resources to help with social skills or occupational therapy. Seems like those are more for kiddos on the spectrum who are diagnosed in preschool and early elementary. Beth can function OK in school and excels in a few subjects but struggles socially. She had a couple close friends when she was little, but no close friends since middle school. The small friend group she had in high school petered out during Zoom school/quarantine. Since starting college (here in the Bay Area, thankfully not far away) she’s not meeting new people due to her social skills deficits and spends a lot of time alone in her dorm room. I visited her at school last week and was alarmed to see how her hygiene has gone off the rails without parents around to offer reminders about showering and brushing teeth. The college doesn’t have any support groups for ASD students, and now that Beth is 18, I’ve been told it’s her responsibility to secure her own therapist (legally I can’t act on her behalf anymore). We’re willing to pay out of pocket for a good therapist or support group but every attempt I’ve made to find someone who to help with therapy, social skills, and whatever you’d call hygiene help (is this life skills therapy?) have been dead ends. Does anyone know a specialist or organization that could help? Thank you.

    I went to the nami.org website, searched on autism.  This link in particular seems like it has info for you:  the Interactive Autism Network came up fohttps://www.iancommunity.org/cs/adults  .  Our friend (ADHD) has a paper taped to his mirror with checkboxes on it, so he can look at it every morning: brush teeth, wash face, brush hair, etc, it works for him.

    Shelly Hansen helped our kid a lot.

    Hi! 
    AANE has great resources for parents, young adults and teens with HFA. Support groups, parent coaching, and individual life skills coaches. All can be done by zoom. I’ve used them all. They’re super helpful, just check their website & call for advice.  Low cost or free.  aane.org

    The UCSF Star Autism clinic also has good resources. For social skills for my 18yo, we did their PEERS group for young adults & it has really made a difference. Via zoom. They also have parent advice/coaching and other helpful things.  Covered by insurance. Very responsive by phone or email.    autism.UCSF.edu  

    Have you tried looking into Social Thinking groups, https://www.socialthinkingsanjose.com/services.  Their headquarters are in San Jose, but offer remote groups, as well as directories for therapist trained in that methodology.  My son is also HFASD with ADHD, lots of issues with pragmatic communication and this program has helped him come up with social strategies.  Another recommendation was looking into a Executive Function tutor for some of the organizational things.  My son wasn't diagnosed until this past year at 13, but I already knew something was going on and enrolled him in Social Thinking, because like your daughter had very similar social challenges.  It might be more of a challenge to convince her to participate, but it might help her overall feel better about herself.  

  • Hi. My daughter is 15.5 years old and in 10th grade. She used to be a great student but is failing most of her 10th grade classes with Fs due to anxiety and depression (which started during distance learning because of the COVID-19 pandemic, our public schools are still closed as of June 2nd 2021). My son is a bit younger and is also having anxiety and anger issues. His therapist recommended that we get him tested for autism/asperger's. This got me thinking that my daughter might also be affected by autism/asperger's as she has always been shy, and is now unable to keep up with Zoom classes when she has to work on small groups (she disconnects without warning and says she cannot avoid it). Also, she has always assumed rules that do not exist about what is allowed behavior and what is not, just because she is afraid of doing things differently from others or and doesn't like to stand out. I have been reading quite a bit about asperger's and autism lately and it seems a lot of girls are not diagnosed because they hide their symptoms much better than boys. So, I am looking for recommendations about providers who can do an assessment and have experience diagnosing teenage or older girls with not-so-obvious symptoms. Any recommendations? We live in the southern part of Alameda County but are willing to drive where needed..

    I would NOT recommend Sumana Kaipa, she completely misdiagnosed our child, and caused us much distress. She moved way too quickly in making a diagnosis that was completely wrong.

    Hello there -
    We have an ADHD kiddo, so not quite the same, but maybe comparable in terms of thorough assessment needs. We are currently with https://www.taliakurlandpsyd.com/ for an assessment. She came highly recommended by https://www.clearwaterclinic.com/ , our therapists. She is very professional, clear in communication but also warm with my son, who even enjoyed the first session.  Clearwater also does assessments, but the wait list was longer with them. Hope that helps and that you will get the info you need to help your kiddo. It's a tough road for all of us, and I believe that gathering as much information as possible helps us identify the best way forward. 

    I recommend Sumana Kaipa in Berkeley. She diagnosed my 8-year old last summer, also high-functioning but with similar issues. She has lots of recommendations on this site so I think people have universally appreciated her excellent work.

    The Mind Institute at UC Davis is an excellent resource:

    https://health.ucdavis.edu/mindinstitute/

    We took our nonbinary neuro atypical 17 year old to Diana Trichilo: https://www.drtrichilo.com/ up in Sebastopol. I highly recommend her. She was fantastic; kind, thoughtful, and thorough, very aware of the differences between the boys and girls autistic expression, and understood the system and how to get access to services. Working with her was totally worth the travel and expense. Even though it was long way to go for appointments, we explored the area and made day trips out of them.

  • Therapist for a 15 y/o boy with Asperger's

    (5 replies)

    Hi,

    Our 15-year-old son was just diagnosed with mild, high functioning autism which is practically indiscernible, especially by his teachers that only see a kid that has never gotten in any trouble, typically earns A's and B's, and is respectful and easy to deal with.  And, while all this is true, they don't see how he struggles to keep up especially with being able to self-advocate and self-regulate, struggles with class debate/participation despite having far higher than average articulation and verbal skills yet due to lack of dynamic social skills, struggles to even speak at all in a classroom with his selective mutism which is a symptom of the HFA. they simply ding him for "class participation."  The ECHS merely put him on a 504Plan, but after the HFA diagnosis I will push for an IEP, as the 504Plan does nothing for him, especially since the teachers often fail to follow it or are hard-working, well-meaning yet simply don't understand his  "lack of speaking up" is beyond his control and not a behavioral thing. 
    The diagnosis was just received, but what I'm looking for now is advice on therapist good with teens to help with foremost social communications and HFA. The pediatric specialist that diagnosed him referred me to Katherine McCarthy (and Helmit Relanger team) in Berkeley but I called days ago with NO response, so I'm already not impressed.  Another referral she gave was for Lenord Levis. If anyone has experience with these doctors or has recommendations for others please let me know. 

    I already tried to work with Seven Bridges. Got as far as spending hours with paperwork and bringing our son to the first 20-minute appointment but fear we've wasted our time since they never even gave us a quote for out-of-pocket cost after claiming our (very good) insurance won't cover the cost. (this was b4 the diagnosis) They simply put him on a time that "works." Sorry, I'm not looking for someone merely wanting to make money. I'm interested in a doctor and/or team that truly cares. Thank you. 

    My son has a similar profile as your son, but he was diagnosed earlier, at age 11. There are two schools in the Bay Area (and maybe more) that serve middle and high school age children with HFA. The Springstone School in Lafayette has a middle and high school program and there is also Orion Academy high school in Moraga. For years, I tried to get him help in the public school system by way of the 504/IEP system. Even with legal help, you are in for a long, exhausting, and probably fruitless struggle. Like your son, my child was getting good grades in public school. As far as BUSD was concerned, my child's other issues were not their concern. I realize that is not true, legally and otherwise, but that is the way my son was treated. My son was bullied relentlessly, by students and teachers. The best decision I ever made for him was to remove him from BUSD. He is now thriving at Orion high school. He has wonderful friends, he is learning an array of skills to help him with his social anxiety, selective mutism and sensory processing issues. He is surrounded by people who understand him, push him to grow and believe in him. The academics are challenging and interesting. 

    Unfortunately, Orion and Springstone are expensive. I wish you and your son the best of luck and I am hoping you find the right resources for him.  

    My daughter has recently started therapy with this practice in Lafayette.  She's only had two sessions thus far, but it might be worth checking out.  They work with children/adults with high functioning autism, highly gifted, and sensitive indiiduals.  You might give them a call to see if it would be a good fit for you son.  https://www.therathrive.com/

    Anatasia Kim Phd works with teens on the spectrum. She is at The Wright Institute in Berkeley. She is likely to be helpful. Our child with autism, adhd and anxiety has been seeing her for 6 months and it has made a remarkable difference.

    We have had  great experience with Dave Macarchick - who comes right to the house (no more driving to an appointment) and works directly with your child in the home environment. Dave has tremendous experience but is not technically a therapist (see his website) He has a unique ability to meet kids (and their issues) right where they are at.  He worked with my Asperger's son  from 2nd grade through high school,  progressing from basic behavioral challenges and impulse control to navigatng the finer nuances of social challenges. My son is now on the President's list at a univeristy in the midwest (and still loves to check in with Dave when he is home on break). We are a long way from where things started. He also got my son through all sorts of phobias  as well as behavioral and social challenges - and they had fun in the process (!). I highly recommend him.   My son has 2 younger siblings at home and Dave was able to work on the family relationships and dynamics as well as support my husband and I in our parenting of the situation.

    This is his info:

    Dave Macarchick 415-828-0864 (415 number but he is based in East Bay)  

    Here's a page from his website:  https://www.neurodiversityservices.com/testimonials

    Feel free to contact me with questions.

    Thank you to all that have responded to my message! I forgot to mention that my family pays into UnitedHealth quite deeply, and so I am only interested in therapist/services that accept UnitedHealth or are within that network. Many of the doctors referred to me sound great, yet very expensive. Again, we are looking for therapist and social skills groups for our 15-year-old son diagnosed with High Functioning Autism.  Location is also key, we live in El Cerrito so Berkeley, Albany, EC, Richmond and surrounding area best. Thank you!

  • I'm asking on behalf of my friend who lives in Asia. Their 3rd child was born in the US and went through some elementary school in the Bay Area. He was diagnosed with Aspergers here and then moved back to Asia a few years later. They are finding that there are very limited resources for individuals on the spectrum where they live so are pondering if they need to move back to California so that their son (now 19) has a better chance at job prospects and finding support/resource. He graduated high school but is not presenting going to college.

    Where do I begin looking for info to send to my friend? It seems like easier to find info about young kids w/ Asperger's and resources for those families.  Thank you!

    Take a look at http://www.aascend.org/ to start. The Department of Rehabilitation provides some resources and, if you qualify, so does the Regional Center (which provides state-supported services for some people with disabilities.

  • 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!

    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.

Archived Q&A and Reviews


Questions

How/When to tell Teen she has Aspergers

March 2013

''Sally'' was diagnosed with aspergers the summer after 5th grade. Because she doesn't have the more extreme asperger-ish traits, but instead only has a handful of traits that make others see her as a loner/quirky/superbright, we have hesititated to tell her of this dx for fear she'd self label. Now she is battling with cutting herself and seeing a psychologist. So far, she has stopped the cutting, but instead she sometimes will hit herself. ''Sally'' does have a small group of close friends. I don't believe any of her friends have aspergers, although they go to a private high school that celebrates differences and even then they are all on the social fringe.

Do I tell ''Sally'' now of her dx, and would that be helpful or make her feel even more estranged. Depression is one of her traits, but she refuses any medication since she is very creative and sees how it dulls other kids she knows or makes them feel somehow different from themselves. ''Sally'' is very bright, a top student, and wants to study creative writing in college.

I'm more interested in her finding her social tribe in college, as I am sure she'll do fine academically where ever she goes. Any advice? Feeling Lost


I really understand how you got in this situation. My foster son came to us with a morbid fear of not being okay--he was having PTSD symptoms and felt strange all the time, and desperately didn't want to hear that he was different from anyone else. Consequently, we were very, very careful about how we handled neurological and psychological testing, and only gave him as much information as we absolutely had to. At the time, I felt that some people considered that to be keeping secrets and that it wasn't okay, but I knew my kid and his needs and he could not handle much.

So I don't think your motives were bad at all in not telling Sally about her diagnosis. And diagnoses are sometimes wrong, so it might have been that the diagnosis was eventually not that relevant.

It sounds like maybe her diagnosis has become relevant, however. I think what you wrote is very close to what you should say. ''Honey, we had you tested because of some things we noticed, and they said you had Aspergers, and we didn't think it was useful for you to know at the time. We never wanted you to be limited by a label. But now that you're struggling, we think that hearing this information might be useful and might help you understand yourself and your behaviors. This is a good thing for you to discuss with your psychologist.''

Try not to behave like you made some huge mistake, or were keeping some deep dark secret. Be matter of fact. This is the truth. It is only one facet of her, something she might find very important or not that relevant. But before and after hearing of her diagnosis, she'll still be the same person, she'll just have more information. sounds like it's time


I don't know about Asperger's, but I will share that for our daughter ''Marie'', we'd suspected she had ADD, but we feared labeling her, over-diagnosing, etc....so we just decided she was quirky and special. Until she began showing signs, as your daughter has, of feeling bad about herself: cutting, social isolation, depression, eating disorder, etc. We saw therapists who mostly focused on the eating disorder, but because she's bright they never saw the ADD part.

She went off to college, and did ''find her tribe'' but still struggled. Finally we found a really good psychiatrist who was able to take a much more comprehensive look at her, who said that Marie's problems seemed mostly to stem from undiagnosed and untreated ADD. Marie had already suspected the ADD issue, and for her it was a huge relief to have the diagnosis, she no longer beat herself up so much, and understood her constant mistakes and risk-taking in the context of the ADD. Once the ADD was acknowledged and somewhat dealt with, the anxiety and depression were greatly reduced.

So my guess is that your very bright daughter might feel relief to know about her Asperger's diagnosis. She's in high school, plenty old enough to understand this. And as to the labeling, it can actually be freeing. She can learn ways to understand her behaviors and not feel the blame/shame so much.

I hope she won't be mad at you for ''hiding'' the diagnosis, and will understand you really meant well. You're loving parents, you wanted to protect her from feeling ''less than'' or ''different than'', but the thing is, kids often know, or suspect, more than we think they know, and their having only partial knowledge can be distressing. The longer you withhold the information, the more she's likely to feel it was something terrible you were hiding from her, and it needn't be that way.

As to how to do it, probably it's best for Sally to meet with an Asperger's specialist who communicates well with her both about the diagnosis and about the implications for understanding herself and the world around her. It might be time to start anew, with a fresh evaluation rather than depending on the 5th grade evaluation, so maybe that way you don't have to deal with the ''old news/withholding information'' problem. I don't have a suggestion as to who to see, but hopefully someone else does. My guess is that ''Sally'' is ready to be given the tools to understand herself. ''Asperger's'' doesn't have to be a restricting label, it could instead come with a whole lot of potential... ''oh, this is how I am, and others are like this, and here's how others have coped and flourished.''

Best wishes to you, keep moving forward.... ++++


I have a 13 y/o boy with AS. Like your daughter, he is super bright and does well academically. Socially, he does fine in his small school, though we've had bullying problems in the past. He is relatively immature and not self-conscious (and a boy) so we are still in a ''grace period'' socially. We, too, agonized over telling him. We waited 2 years. Everything I read, particularly by people with AS, urged us to tell him.

Our boy is prone to bouts of anxiety and down moods that will likely get worse as he faces social challenges & puberty with more self-awareness. We were worried that he would use the label to feel ''hopeless'' or as a crutch, since learning social coping and workarounds takes real work.

But honestly, when we told him (at 12) it was rather anti-climactic after all that worrying. We scripted it out: how his AS helps explain the ways he is different, how his analytical mind makes him brilliant but also rigid, why he struggles to understand people, why he has sensory overload, wants to withdraw, finds comfort in repetitive activities. We talked about famous people (Jefferson, Einstein, Gates), who are believed to have AS. We gave him books to read. We tried not to sound like it was a big deal, that it would make him understand himself better.

The response? In his typical AS style, it didn't concern him much. I am still waiting for him to care more about it, which I fully expect he will, in his own time. It's almost like we forgot he had AS when we predicted his response. At this point, he does not feel bad about it, does not label himself or use it as an excuse (I suppose that could change). He is matter-of-fact and doesn't communicate about it. Now I can point out to him when something is difficult for him to understand, or when he is being particularly rigid or repetitive or brilliant, that this is typical of AS, how he can learn a work-around, how it affects others. This has been very liberating.

I recommend reading chapter 3 of Freaks, Geeks & AS by Luke Jackson (''To Tell or Not to Tell''!). This book has insights into how to explain AS to your daughter in a positive way (eg; page 21-22, we used the ''graphic equalizer'' analogy). Also, ''Look Me In the Eye'' by John Elder Robison, who has AS, gives insight into why it is important to know, and how much better he feels he would have coped had he only known. You know best how your daughter is likely to react. However, in my opinion, the sooner she knows, the sooner she can start to sort things out herself. It will explain so much for her. If she could tell you, almost certainly she would say she wants to know. Have you looked into Orion Academy, a HS for AS kids? It is potentially an option for easing the way and finding our children's ''tribe.'' Good luck. Mom of AS Boy


Driving school for Asperger/ADD Teen/SF Peninsula?

June 2012

Our son 16 yo. wants to learn how to drive this Summer. I'm looking for an excellent school that have extensive experience teaching special needs kids- ie- Aspergers, ADD. Thanks New to this


I hate to say this, but as an HFA/ Aspie, I flunked driver ed and didn't make it to the driving test itself until age 35. Frankly, someone w severe sensory sensitivity and overreaction to stimuli may be too sensitive to drive at this age. Please consider whether your kid should be driving at all. I'm enjoying having far less sensitivity to stimuli after bearing two children, and am a longtime extremely safe driver now. Life is hard for Aspies.


Help for special needs teen with aspergers syndrome

Jan 2012

hi i am looking for help for my daughter who has aspergers syndrome she is very shy she do not have friends in school i need help trying look for something for her needs i have interest for the childrens learning center in alameda,ca is it a great school for special needs teens.


Check Communication Works in Oakland www.cwtherapy.com, located at 4400 Keller Avenue, Suite 200 in Oakland, California 94605 and can be reached by telephone at (510) 639.2929 and email [email protected] BL


I wonder if you have considered a social group for your daughter. Our son--who also has Asperger's--worked with Dr. Maria Antoniadis in a facilitated group, which worked wonders. Beyond learning how to meet people and how to strike up a conversation, he became much more socially confident. Eye contact is easier. He seems not to perseverate as much. We found this weekly group to be worth the time and reasonable expense. --Been There


Disclose Aspergers diagnosis to peers in high school?

April 2010

Our son will be starting high school this fall, at a small private school in SF. He's very bright but struggles with fitting-in and feeling different(he sees a therapist & attends a social thinking group once a week). The local public middle school has been tough for him socially as kids think he's just ''weird'' and ignore him, but he has a few close friends that are very accepting and ''get'' him and are aware of his diagnosis. More than anything, I want my son to feel successful in high school, but would disclosing his dx to peers make him more of a target or are kids more likely to be more accepting and understanding about his challenges? I can't help worrying. Worried mom


At his age he should have a say in it. Get him the book ''Look Me In The Eye'' (by John Robison, I think) and talk to him about what he thinks would work. This is a memoir by a guy who struggled his entire life and who found some redemption in a diagnosis that happened somewhat accidentally when he was well into his adult life. It's also an interesting read on its own. But let him decide what would work best for him. ANd maybe talk to the school administrators and see if they have any experience with this issue. At my daughter's school, there are a few kids who clearly don't ''get it'' and I try to raise my daughter's tolerance by raising her awareness that some kids just think differently. My instinct would be to let his handicap be known, because people tend to be more tolerant to the degree that they understand that people can't change things. REmember that all these kids have to deal with your kid too. so a diagnosis may also give them tools for how to deal with the inevitable conflicts. Also getting it out there might help to destigmatize the condition. Plus it might help him find his true calling--there are plenty of people on the aspergers or autism spectrum who are quite successful in life. Probably many of them are scientists, engineers, etc. BUt I can guess that none of them are therapists or child-care workers. That's not their strength. THe author of that book was very successful as a sound engineer and now runs a high-end autobody shop. ANd he's married, has a kid, and even managed to survive a rather unconventional childhood (he is Augusten Burrough's half-brother---the guy who wrote ''running with scissors'')


There was boy with this problem in my child's small pvt school during Jr Hi years. Parents were afraid of ''stigma'' so kept it secret for first year. Problem was that kids knew something wasn't normal, and thought he was anti-social and he became isolated. Then (possibly on advice of therapist) he told his classmates his problem, described some symptoms and asked their understanding. This helped quite a bit, and he ended up with a couple of students as friends and more tolerance from all. My suggestion is to get a sense of what your son's classmates are like by watching them interact on school yard and getting to know a couple of parents you can trust. (Some school authorities just want to give you a rosy picture--parents are more candid.) Small class groups in small schools can be close knit or there can be ins and outs and snarky types who intimidate the rest. Get therapist involved and move cautiously, get your kid involved too, if possible. If/when you all agree advantages outweigh risks, get school authority's help in telling classmates in a low-key way that calls on classmates' maturity and reminds they are all ''different'' in certain ways. History teacher in our school (the Academy) looked out for this boy, reminded certain other kids when he saw the need, and linked to parents. Really helped. Flyer


I missed the original post, but I hope this is relevant. I am a high school teacher that recently got a new student who clearly has symptoms of Aspergers. She was rude, disruptive, and inappropriate, and the other students deemed her ''weird,'' laughed at her, avoided her as much as possible and eventually began telling her to shut up. Her outbursts caused huge disruptions in our class.

After about two weeks I talked to the rest of the class when the new student was not there. I explained what Aspergers is, what the behaviors are, and gave them some strategies for interacting more positively with her. They were SO RELIEVED! They actually interact with her more often now that they know how to redirect her and are not afraid to be explicit about her behavior and/or their expectations.

She still manages to be wildly inappropriate and cause giggles in the classroom, but the other student are no longer frustrated or annoyed and the disruptions have been totally minimized. Her classmates actually thanked me for letting them know and have been great about attempting to integrate her into our classroom community. --In favor of disclosure


10-yo's social difficulties; he doesn't know he has Asperger's

Jan 2010

My 10 yr old son has very mild Aspergers syndrome, which is mostly positive in that he is very bright, inquisitive, polite, and reads voraciously, loves facts, games,and older kids and adults enjoy him. But, he has a hard time with making and keeping friends his own age who don't ''get'' him and he doesn't always understand their social cues or when they are being sarcastic. Where can we find other kids for friendship who have a similar situation?

Second question: he has not been told yet about his diagnosis as I don't know what effect it would have on his self esteem. He already thinks that something is ''off'' because he gets teased in school and told me he feels like a different species from the other kids. It breaks my heart to hear that but telling him is very delicate and I'm afraid he would stop trying to make friends if he knew. Eager to hear from others with experience. Berkeley Mom


Hi, I also have a 10 year old boy with mild Aspergers/HFA (whatever they call it these days!) and he sounds pretty similar to yours, except perhaps that he is more into science than reading, and he may be more unaware of his differences, at least so far.

But this issue is a big one with me: When and how to discuss his ''disability.'' He has brought it up obliquely to me at different times. Most recently (last week), he presented it more directly than ever: Out of the blue, he asked me if he had ''autism, since people with autism have social skills issues.'' (He knows he has social skills issues because he has gone to groups in and outside of school.) I'm not sure where he got this connection between this ''brain disorder'' as he put it and his own issues, but I'm sure it's around his school, on the radio, etc. I really didn't know what to say, and the moment passed.

I'd love to talk with you moreif you'd like, and possibly have the boys meet sometime, and see if that works. J


I have a 13yr old Aspie son, and I'd recommend starting a parent support group at your school where you can meet parents of kids with similar issues. You may try putting an ad in the school's newsletter advertising your group. That may lead to play dates for your son and information sharing that would be helpful for all of you.

You may also consider a social skills group where he can meet other like-minded peers. There's a pretty comprehensive list at http://www.aspergersresource.org. Hope this helps!


I would encourage you to check out Communication Works in Oakland, www.cwtherapy.com. My six year old son has been going there for several years for a ''social thinking'' group. It's a small group (3-4 kids) of same-age peers who are working on the types of issues you described, and they have groups from preschoolers to teens. Every week he learns a social concept and practices it with his group, and we get some instruction at the end of each session on how to work on that concept at home. We've found it to be very helpful; my son really likes going and is becoming more comfortable with social situations, and we have learned a lot of techniques for helping him. And the therapists are absolutely wonderful; they really get my son and have different strategies to meet the needs of each kid in the group.

As for whether and what to tell him, that's a tough one. I've heard from people who feel very strongly that a child should be told of a dx as early as possible, and others who feel that there is no need to tell anyone, including the child. My son has a ''provisional'' diagnosis that isn't very specific anyway, so there's not much in the way of a label to give him even if we wanted to. I do feel the need to explain to him why he goes to group (and other therapies), because even though he hasn't asked, I suspect he might be wondering. My husband and I talk with him about how everyone has things that they're really good at, and things that challenge them, and while he's really great at math and reading, recess and playing with friends are sometimes challenges for him. So, we explain, he gets some help with those things just like some other kids get help with math. If your son feels that he's ''different'' and doesn't know why, it might help to talk about it. The way you described it in your post is very positive and sounds like a great starting point for the conversation. Good luck -- these things are so hard and no one prepares you for it! Oakland mom of a lovable quirky kid


Has your son had any social skills training/classes? My son is just 4, and is on the autistic spectrum, and I am just starting to look into social skills groups, so I can't comment on any particular one, but I have heard great things about Communication Works (http://www.cwtherapy.com/) in Oakland, as well as Quest's summer camp (http://www.questcamps.com/). It seems like those types of things would help your son find peers that are similar, as well as help him develop some of those social skills that you commented on in your post. J


I am currently looking at this problem from a few years ahead and a few years behind...My niece has Aspergers, and my own son is will be evaluated soon. My niece is almost 20, and has no idea. None. Life is hard for her. She doesn't feel normal, but no one has ever addressed the issue, and her symptoms suffer for the lack of discussion about them. I think she would feel so much relief if she understood herself, and other people. I'm not sure what the right age is to do this, but looking at a young adult beginning to face the wider world, I think it would be a gift to give such a child.


I have a similar child and we try to be very open and matter of fact about his particular learning issues. I'm not sure what the positive side to withholding this type of information really is. (Remember when we used to keep adoption a secret from children?) I think keeping these things a 'secret' (which it never really is) helps continue a sense of shame. It is nice to present this (as you have already done) as 'everyone has their particular strengths and weaknesses and these are yours'. In my personal experience I have never heard about any negative effects from helping a child identify and label their particular quirks. (Although of course this can be emotionally painful for the parents.) I know children who have done oral reports to the class on their own Asperger's and at Raskob (a school for kids with learning disabilities) students are encouraged to understand their particular learning style and how it contributes to their identity. I think being open and honest about these labels helps us take away their stigma and can increase acceptance/tolerance of our children's differences among their peers. Best wishes


14-year-old headed for high school, worried about loneliness

June 2006

Our 14 yo son is heading into 9th grade in his academic private school (he's been there since kindergarten), and we are worried. He has incredible intellectual abilities, but has verrry slow processing speed. His grades went from As to Cs and Ds this past year, mainly because he can't keep up with assignments. His work is A+, but his school values getting the work in on time, period. He won't consider going to another school at this point (we have discussed Orion with him). He has been diagonosed with Asperger's, OCD, ADHD (minus the H), Tourette's, depression, anxiety d/o nos, and volitional falsetto. He has no close friends, and only a few not-so-close friends, but he is one of the nicest guys I've ever known, and a good companion, so I'm hopeful he'll find soulmates one day. His main sadness is ''loneliness.'' We are really struggling. We would like to hook him up with similar kids. Are there any groups out there for similar teens? Are we foolish to keep him in this school? hopeful mom


Congratulations to your son for overcoming so many challenges and doing so well academically until this year! His school not offering accommodations will be a problem for high school. Orion would offer a strong social network and a great deal of support with academics, but it is full- time special education. And if your son is happy with his school, perhaps there are things you can do to make it work better for him. Do you have a handle on organizational issues? Michelle Garcia Winner's organizational DVD/workbook is good. http://www.socialthinking.com/ Plus she has social skills groups. I'm not aware of any organization that does a better job than Orion on providing a social network for Asperger's/NLD highschoolers. Anon


My heart goes out to you and your son. My son, now 17, is also high IQ, low processing speed (0.07 percentile) and also has tended to be socially isolated and inept, though recently he seems to be making progress on this. His academic troubles first became noticeable in h.s. We got him tested and found a learning specialist to help him. I'm shocked that your son's school won't give him any accommodation for his learning disability! What gives?? Do they have a learning specialist? Have you talked to them about standard accommodations? My son's school (EBWS) has bent over backwards to help him, and he's really benefitted from it. I thought most schools were eager to help with this kind of thing. If I were you, I'd start making a lot of noise. Your son's getting a raw deal, in my opinion. Write me if you want more info on how to get help. Laura


My heart goes out to you. I too have a teenage son on the autism spectrum with strong intellectual abilities, but limited social skills. I'm sorry to say that our family hasn't found a satisfactory solution to the problem you pose. The social skill groups run by psychologists such as Maria Antoniadis and Kathryn McCarthy were helpful, but not necessarily a source of actual friends. The best I can recommend are the groups formed around some of the special interests these kids tend to have (e.g., school computer clubs, trading card shops, science clubs or classes).

As for the choice of school issue, if you are fortunate enough to have the option of an independent school, it might make sense to find a place that will understand and work with your student's strengths and weaknesses to bring out his best. There are several independent high schools in the Bay Area that might be more accomodating of your son's processing issues. Urban School of San Francisco and Drew both come to mind as great high schools that reportedly do an excellent job accomodating special needs. Orion or Springstone School in Lafayette, on the other hand, have high schools specifically intended for spectrum teens and thus try to go beyond just accomodation to actually include targeted instruction on how to address and mitigate a student's particular issues. If you do consider switching schools, keep in mind that some of your son's reluctance to change schools might be due to the rigidity and resistence to change so typical of spectrum kids. Wishing you the best, another spectrum mom


My son also has Asperger's. He's in a program though OUSD, the Asperger's Syndrome Inclusion Program, which works with students thru high school. He, too, is an A student, who has found academic challenge to be essential to his well being. In his IEP, he has accommodations to deal with his difficulties with organization and time lines. He currently attends Montera Middle School and we expect him to go on with the ASIP program to Skyline for high school. Please feel free to email me to discuss the ASIP program. Lisa