Recent ASD Diagnosis: What's Next?

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  • 4 year old diagnosed as ASD; seeking advice

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    Jun 26, 2023

    Hi parents, I have an almost 4 year old son who was just diagnosed autistic, level 1 and 2. I am very new to this world and am hoping for resources, words of encouragement, or general advice from parents who have more experience than me! Our evaluation/assessment was only a week ago so we are now waiting on it to be passed along to kaiser so they can align us with the right OT and Behavioral therapists. I believe the psychologist that did the assessment mentioned 15-20hrs/week of therapy (in home) to begin. I'm hoping I heard them right and it's hosted in home?

    My son is a funny, outgoing kid who struggles with speech, behavior, and lots of sensory needs. 

    Thanks! 

    Jun 26, 2023

    My child wasn't diagnosed until later and it ended up being a relief to know what inputs were needed. I wish we had understood early so that she could have gotten the inputs earlier. Lots of therapies and medications did not appear to have immediate results, which was discouraging at time, but we learned that we had to be persistent. OT has been great for the sensory needs. Try to do lots of it even if you have to pay out of pocket. See if you can get the speech covered by the school district. If there are sleep issues, be sure to rule out sleep apnea, it is more common in ASD kids. Behavior therapies have not been a good fit for us and social stuff continues to be our greatest challenge.  My daughter is an amazing person and always impresses me with her compassion and creativity.

    Best wishes to you.

    Jun 28, 2023

    Hi there, it's wonderful your child was diagnosed young so that you will know how to navigate and to advocate when you encounter less informed institutions and environments for your kid. It will be a lot of advocacy, so I encourage you to also protect your well-being, too. If your intuition is that your child isn't getting what they need, I hope you will feel entitled to push to get their needs met. It isn't easy. 
    there are a few great resources I've used as we have learned more about ASD for our child. I highly recommend the podcast Uniquely Human. The most recent episode with a historian who has a lot to say about the problems with ABA was powerful. As a social scientist, myself, the corrective elements of current ASD treatment concerns me, and John Summers is so insightful. 
     

    Eliza Fricker's work and podcast, Missing the Mark, are also excellent, even though she's based in the UK. 

    I can't find it right now, but I know the Autism Society has a guide on red and yellow flags to be aware of for ABA.

    Although you didn't solicit advice per se, I'd encourage you to start with one modality at a time. 15-20 hours for a kiddo is sooooo much. And your family also needs to learn and integrate. Could you start with OT and add things in gradually? 4 is still very young, and ASD doesn't need to be 'fixed,' but supported and attended to needs. Overdoing the interventions may lead to other behavioral responses and even trauma for your kiddo. 

    Jun 28, 2023

    Hi,

    I have a 17yr old w/ many special needs, so have been through the whole thing, soup to nuts.

    I suggest you hire a professional advocate to advise you. It's been more than worth the money and I wish I'd done it sooner.

    I use https://www.php.com/directory/jack-morris-fuerza-consulting-advocacy/

    Best,

    - Don

    Jun 28, 2023

    My (now five-year-old) son was diagnosed a year and a half ago and it was an overwhelming time with experts telling me what was best for him, what was wrong with him, what I should be worried about for the future. It was a lot to take in and I doubted my instincts as a parent.

    Please remember that you’re in charge! You still know your child better than anyone. Trust your gut about what he needs.

    It depends on the practitioner, but yes, in-home therapy is common. But if your son is in preschool, I recommend that those 15-20 hours are spent supporting him there. My son gets much more out of school when he has someone with him to facilitate connections with his peers and his teachers.

    And it’s worth saying that there is not a consensus about what the best interventions are for ASD and what the goals of those interventions should be. People in the field, parents, and autistic adults have strong opinions (for or against) behavioral therapy (ABA) in particular. You may want to look into the debate so you can decide if it’s right for your family.

    A couple of resources to check out:

    https://www.embracingautismservices.com

    https://tiltparenting.com

    https://www.icdl.com/dir

    You’re welcome to message me if you’d like more info.

    Molly

    Jun 29, 2023

    Hey there,

    It’s not an easy road to navigate but it’s really most important to get the right therapies in place and you will see so much improvement in your kiddo. We did the Kaiser route through most of the pandemic and had virtual speech and ABA which definitely helped but I am a proponent of in person services. If you aren’t already, get your kiddo into the school district system because they will be able to provide a lot of services for your son. It may be a part day preschool classroom, speech or OT either on its own or in a group setting within the special preschool classroom. It being summer, their response time won’t be super prompt necessary but once you reach out, they have a legal obligation to begin the evaluation for an IEP within a certain time period, can’t remember how many days exactly. You should also reach out to the Regional Center and while they won’t duplicate services that you get in other places like school district or Kaiser, they offer assistance with other things like respite, reimbursements for therapeutic recreational activities, etc. It takes several months to even get to their intake process so you might as well get into their pipeline now.

    there are also Facebook support groups that can be really helpful, some Bay Area wide and some city specific. 
     

    feel free to message me with any questions. I am by no means a pro but I have some experience with this process.

    Eugenia 

    Jun 29, 2023

  • ASD diagnosis for 7YO - Now What?

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    May 28, 2021

    Hello BPN!  So we have a near seven-year old who is super bright but has had some consistent social difficulties.  We initiated ASD evaluations last year, and finally managed an in-person appointment last week, and received the diagnosis today of high-functioning ASD.  

    Of course we thought about this here and there over the years, and we were the ones who sought the evaluation.  But now that there is a diagnosis, I find myself devastated.  I suppose we were hoping that it was just something that would be outgrown.  

    My questions are:

    • How do I process this?  How can I get support - are there communities that I can join, for example?
    • We are in a private school that we love.  The school has struggled with some of these antisocial behaviors, but has been broadly supportive and attentive, and we feel that it is a good environment.  We want to stay.  We will certainly discuss this in a more specific and informed way to seek support.  But do we tell the school this label?  Might the school use this as a reason to kick us out?
    • do you tell others, for example, parents of classmates?  Do people think of/treat your child differently as a result of the label?  Is that a good thing or not?

    Thank you. 

    May 28, 2021

    I was in a similar position 5 years ago and I can honestly say that now I view my child’s autism as a gift and an opportunity for growth for me and our family!  You should definitely check out the Autism Speaks 100 Day Kit for starters: https://www.autismspeaks.org/tool-kit/100-day-kit-school-age-children

    I think there are local support groups on Facebook but I haven’t looked at them.  

    I’d also be happy to speak with you!  Our child also attends a private school and it’s been a fantastic choice for us.

    Best,

    Sarah

    Jun 2, 2021

    I have no personal experience to share, but I want to recommend you follow the Instagram account @the.autisticats

    It is run by a few autistic college students who share all kinds of advice, anecdotes, and facts on autism. I started following because I wanted to learn to be more empathetic towards colleagues who I believe are autistic and have much different working styles from my own, and I think the young adults who run the account have such valuable insights for anyone to have a better understanding of how the autistic brain works and how the world can better accommodate and appreciate autistic people. They offer quite a few tips for parenting autistic children.

    Best of luck to you!

    Jun 2, 2021

    We have been told since our child was diagnosed: her diagnosis does not make her different than she was yesterday. She's still the same child. For us, her diagnosis was explanatory of traits and tendencies that we had found somewhat baffling. By explaining them, her diagnosis helped us understand and empathize with her better, and to not resent her behaviors because we misinterpreted her as being willfully obstinate. I think talking about the diagnosis is important, because it helps normalize ASD. ASD is a wide spectrum, and more and more people, children and adults, are being diagnosed as being on the high end of that spectrum all the time (and I'm assuming if your child was just diagnosed he's on the high-functioning end of the spectrum). At the same time, we don't broadcast it unnecessarily and reserve talking about it for contexts in which it is helpful (such as with teachers, coaches, summer camps, parents of close friends). Most people are surprised when told my child has ASD, but at the same time they are then more understanding when she says or does something that would seem off in a neurotypical kid. They have more context for her actions. I have never met anyone who treated her in any different way because of the label - but then again we've never been in a situation where someone knew that she had ASD before they knew her (except her special ed teachers at school - but their careers are about kids like mine, so obviously their attitude is the right one). I can't answer about private school. My daughter has an IEP in public school and both before and after her diagnosis her teachers and school administrators have been only helpful. In fact, her second-grade teacher was the one who first pushed us to get her tested because her own child had ASD. And getting her into special ed has been revolutionary. She is devoted to her special ed case manager, who is extremely attentive and constantly keeping us updated about how things are going in the classroom. I would be horrified if your school would kick you out over a disability - but if they would do such a thing I can't imagine that you'd actually want to be there. But to get back to the first point: your child hasn't changed. A label is just a tool, and the purpose of tools is to be useful. Try to put the tool to use by lining up services that can be helpful to you, and understanding your child's behaviors, good and bad alike, a little better. I think in the long run you'll find it really valuable.

    Jun 2, 2021

    It might be really helpful to start with resources such as ASAN. Try to learn from Autistic adults. The term autism has so much unwarranted stigma and bias in our society. It’s sad. But in reality it’s just a different (not worse or lesser) way of being. I think once you become more comfortable with the term and understand it’s not a tragedy (which I know can be so hard!) then it’ll be easier to tell trusted friends and family and your child’s school. Best of luck!

    Jun 2, 2021

    Welcome to the club of parents of ASD kids. You will likely get a lot of replies to your posted questions.

    We have a high-functioning ASD son, now 32.  Since our knowledge base is somewhat outdated, we'll leave specific suggestions to others to provide.

    To respond to some of your questions:

    Yes, join in a community with other special ed parents. There is a parent support group that meets Mondays in a Lutheran church in Lafayette, if you don't find similar families closer.

    Private schools vary a lot in their willingness to work with special-needs kids.

    If you can manage it, have your family be an excellent asset to your school community.

    In practical terms, if the school sees your kid as a disruptive influence in the classroom, they can expel him if they want to. 

    Our best year was when there was another kid in our son's class who was worse-behaved than he was.

    Depending on what behaviors your child is presenting, consider enrolling him in a social skills group facilitated by a professional.

    Be cautious about disclosing your child's disability.  It will not necessarily elicit a compassionate response from parents of neurotypical kids.

    Above all, try to nurture one or two friendships between your son and other boys, and do not allow him to be bullied.

    We were taught in a weeklong neuropsych evaluation at UCSF, when our son was six, to avoid the "collateral damage" that comes from bullying.  I am so glad that we took that to heart. As an adult, he does fine socially.

    Also consider Scouts. The program was very helpful for our son.

    Wishing you all the best.

    Jun 2, 2021

    Hi Boston,

    I understand how hard it is to receive this diagnosis, and it's important to realize that there will be a period of mourning for what you had hoped for before you come to terms with what  is. But you will get there in time. I decided to be honest with the school, friends and family about our child's ASD diagnosis. Folks likely recognize that something is different about your child, and it's better to get it out in the open. You will find that some people will shy away, but you will also find that others will be drawn closer--and those are the keepers. Private schools don't have to provide services for your child, but public schools do. My child is in a good public school, and the services have been excellent. Take a hard look at public schools and ask around to find out which ones provide good services and a good nurturing environment for special needs kids. Consider moving to the school district that you think provides the best services. Speak up about ASD, and you will find others in your boat...there are lots of people in your boat, and your boat has some advantages that you will eventually come to see.

    Jun 2, 2021

    Oh my gosh hugs my friend! I have 2 daughters aged 10 & 6 with high functioning ASD (we call it being an aspie) and both of my girls are thriving! I remember the initial diagnosis for both girls was part relief, part what now? There are many emotions that come with diagnosis. Books are your friend! I read and researched a lot early on. A good one is A Parent's Guide to High-Functioning Autism Spectrum Disorder, Second Edition: How to Meet the Challenges and Help Your Child Thrive. I would highly suggest getting into public school into a full inclusion program. We attend school in the WCCUSD and there are at least 2 programs that offer this support. Both of my girls have improved tremendously with this support and program! Private schools just do not offer services needed at this point. And this is the time for services while they are still young! My girls have improved so much thanks to school support. We have made a community among certain parents who are and aren't in the program and everyone has been nothing but supportive and helpful. We've even had some families willing to be "guinea pigs" when our girls were young helping their social skills along on playdates with ABA support. In my opinion it is a good thing to share as people are more than happy to help and support. It also is good knowing that when we for example go to a birthday party and my daughter is melting down or not wanting to play, for them to understand and me to not feel ashamed or embarrassed. 

    Take care and feel free to reach out if you'd like to chat further...I've been there and still traveling the road! 

    Jun 5, 2021

  • Meeting opportunities for young adults with autism

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    Feb 6, 2020

    We have moved into the Bay Area since a couple of months and are looking for a safe and nice place in or around Berkeley where young adults with autism can meet each other to make friends. Our 20-year old daughter has a rather mild autism spectrum disorder but still enough to have difficulties  connecting to new friends

    Feb 6, 2020

    Welcome to the Bay Area! My son is much younger so while I don’t have any specific recommendations, I have some suggestions on where to find some. First, there is a great Facebook group “East Bay AustismParents” that may be helpful. Most of the posts are from parents of younger children, but there are parents of older children who are great resources as well. Also, if you go to meet up.com there are frequently activities and social outings planned for young adults with ASD. Here’s to some great fun for your daughter!

    Feb 10, 2020

  • New Autism Spectrum Diagnosis and Seeking Resources

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    Jun 20, 2019

    My 2 yo son was recently diagnosed with ASD by a developmental pediatrician and I am trying to explore my options for ASD services, specifically preschools near Walnut Creek that either have experience with ASD students, work with outside ABA providers (I’m looking at STE consultants to go onsite to work with my son), and/or are Hanen or Early Start Denver Model Certified. 

    I am currently hearing great things about School of Imagination in Dublin, but I’m wondering if there are other preschools that are closer?

    Separately, I have heard Lafayette is the best school district for Early Intervention Services (based at Burton Valley), what are parent’s experiences with the Walnut School District with Early Intervention? How do they compare to Lafayette? Are any of their instructions Early Start Denver Model certified?

    For reference, we already have him enrolled in Early Start through San Ramon Unified School District and have him going to private speech therapy twice a week. We are working to get assessed through Regional Center to get any additional resources that don’t overlap with Early Start (i.e. ABA). I am in the process of reading An Early Start for Your Child with Autism, More Than Words, and It Takes Two-any other recommendations are appreciated. 

    Also, are there any mommy support groups you recommend for parents of ASD children?

    Thank you!!

    Jun 20, 2019

    Firstly, you are amazing. It is not an easy task to take as many steps as you have so quickly. If you look online for the first 100 day kit (should be a free download) this may be a helpful tool. Uniquely Human is another wonderful book I recommend to every parent I work with (I’m an OT working in EI), I love the other one you mentioned as well. 

    All the best to you and your amazing family! 

    Jul 3, 2019

    You're off to a great start already. We did ESDM with our daughter the first 3 years and liked the program, but there were issues that ESDM was not equipped to address. We have now been working with a company in San Rafael (long drive but worth it to us) called Cortica (corticacare.com). They also approach behavior similarly to ESDM type models (child led, no reinforcers), but I have found them to be a bit more comprehensive. They also offer a range of services under one roof (ABA, neurology, OT, speech, music therapy, and other services to come). I love having one place to schedule with and I love having our clinicians work together. It's not uncommon for our OT, Speech, and ABA to have a co-treating session. I believe they are planning to open an East Bay location in the next year and I know they are in the process of hiring staff for the East Bay region now. I recommend finding the Facebook group East Bay Autism Parents. You can search previous posts and find a wealth of personal recommendations and experiences. My last recommendation would be to think beyond what experts are telling you. We were thrust very quickly into ABA - that was the primary focus of every recommendation. It serves a purpose, but looking back I wish I had focused more on medical interventions OT and Speech. Good luck!

    Jul 10, 2019

  • Resources for preschooler with autism - and his parents!

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    Feb 25, 2019

    Our almost four year old has ASD. He is high functioning, but still struggles in the social/school setting. He has an IEP and just started a three hour/day program through WCCUSD. I'd love to hear what else is out there in our community for young children on the spectrum. Particularly, we are looking for an afternoon preschool/daycare program for him in the Richmond/El Cerrito/Kensington/Albany/Berkeley area, that either specializes in ASD or is at least devoted to inclusion and accommodation (we can provide an aide if necessary). He has been fairly successful in two mainstream preschools, but does need additional attention/support. Also, are there any other organizations, playgroups, sports programs, where a child with ASD would be welcomed and accommodated? Basically, I just want to know what is out there for him/us. It would also be great to find a support network for parents of children with ASD or other special needs. Thank you hive mind!

    Feb 25, 2019

    Hi there! We have a 4 year old daughter with high functioning ASD as well. She is going to the preschool/early intervention program at Montalvin Elementary in San Pablo, which has been awesome so far! We also have a 2nd grader with high functioning ASD in the full inclusion program at Wilson Elementary, which has also been so helpful! Our kids take the bus to a neighbor daycare after school, so I really don't have any experience with after school programming. Our 4 year old's teacher has been really helpful educating our daycare and providing resources for them to help work with her and deal with issues as they arise. We love going to Kids Gym (formerly Rock the Spectrum) in Berkeley on days off. It's a sensory kids paradise! :-) We've found with all the early intervention with our older daughter that she really doesn't need accommodation group settings and organizations. We have her in Girl Scouts and do regular city wide camps for school breaks and she does really well overall. Early intervention has been key with getting her there! :-)  Feel free to reach out if you would like to talk more. We are in the midst of it with our 4 year old and have some experience navigating life with our "aspie" 2nd grader as well. :-)

    Cheers! 

    debg325 [at] yahoo.com

    Mar 1, 2019

  • New parent in the Bay with Autistic child

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    Oct 29, 2018

    Hi,

    I recently moved to Berkeley with my 2 kids. My 11-year old boy is on the Autism spectrum (Asperger). I am looking for any information, support group, contact for a good therapist.

    Basically anything that would make our life easier.

    I would love to get tips from people who are in the same situation as us.

    many thanks

    Geraldine

    Oct 29, 2018

    My younger son is somewhere on the spectrum, and a resource I find helpful is Asperger Experts in Seattle, WA 98122  (google for coordinates).  It is run by a 30 something with Asperger's and has lots of resources, discussion groups and workshops.  My son finds Danny too much of a salesman (he's pretty relentless) but I have spent 20 years trying to figure out effective parenting, and a lot of how Danny (and his parents) approach it makes sense to me.

    Helmut Relinger is a clinical psychologist who runs social skills/therapy groups for teens and young adults mostly with ASD at his office near Alta Bates.   My son did that for several years--some good aspects, but ultimately I think my son needed something different, as his anxiety and depression became more primary.  Moral of the story--you are raising an individual not a diagnosis -- parenting effectively is HARD.  Take care of yourself too.

    Oct 31, 2018

    We are very happy with Think Social in Oakland!  Shelly Hansen is a wonderful speech therapist who runs small social skills groups for same-aged children, teens and adults, and my son with Asperger is benefiting greatly after only a few weekly sessions.

    http://www.thinksocialeastbay.net/

    Nov 1, 2018

    YES! Dave Macarchick worked with my Asperger's son for 10 years while he was going through school and all the associated behaviorial and social challenges he faced. My son is now in the honors program in college in the midwest (he still loves to see Dave when he comes home). Dave has a unique knack and instinct to meet kids where they are at - and they love him for it. He got my son through all sorts of phobias - and they had fun in the process (!). I highly recommend him.  The best thing of all is that he comes right to your house (no driving to an appointment) and works directly with your child in the home environment.  This was great for us as my son had 2 younger siblings at home and Dave was able to work on the family dynamics as well.

    This is his info:

    Dave Macarchick 415-828-0864 (415 number but he lives in Berkeley)  

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

    Feel free to contact me with questions.

    Nov 7, 2018

  • Trying to find an Autism community and general advice

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    Nov 28, 2016

    Hi,

    My 3 year old son was diagnosed by OUSD with Autism.  He is on the more typical side of the spectrum and although the diagnosis is not a huge shock, we are trying to figure out what this will mean for him in school and beyond.  The school district offers us preschool at Emerson CDC in Oakland with six special needs kids and 15 typical kids with the goal to mainstream by the end of the year.  We are not thrilled with it and would like to know what our other options are.  We have not had a medical diagnosis yet.  He is the kind of kid where it is not immediately obvious that he is different and he is very social.   I have some questions and am hoping that someone who has gone through this can help navigate this a little. 

    1. I would love to find a GREAT pediatrician that can really take the time to help us get a medical diagnosis and help us with the ABA options.  Does anyone think this is even worth doing at age three? Our current pediatric group has been extremely unhelpful and we really have been on our own since we started all this at age 2.  

    2. Has anyone been through the Oakland or Berkeley special ed with a very high functioning autistic kid?  Has anyone done the public school preschool option?  We are actually thinking of moving to Berkeley anyway for our older typical kid and would love to know if it would be better.  We are also willing to move to Orinda or Lafayette.  

    3. We would LOVE to find other parents with high functioning Autistic kids or some sort of support.  I dont know anyone with atypical children, and it is feeling pretty lonely.  I also worry about him having friends, he really enjoys playing and interacting with other kids his age. My biggest worry is that his differences will affect his ability to have close friends.  

    4. Are there any private preschools or elementary schools that would be an excellent place for a highly functioning, very intelligent autistic kid?  

    Thanks! 

    sklevine123 [at] gmail.com

    Nov 28, 2016

    Hi there,

    I have a 5 year old with autism who was diagnosed at the age of 3. We live in the Dublin- Pleasanton area and he has benefited from going to the DUSD public school preschool a lot, alongwith ABA at his afterschool program (with neurotypical kids involved as well). While I can't comment on the OUSD preschool, we have a had a good experience in the DUSD preschool so I can say that if the preschool is good it can be very helpful for the child.

    As for a parent community- I have found the Peninsula Parents of Special Needs Kids (PPSNK) to be an invaluable online community with tons of practical advice on the entire range of issues from medical to navigating school systems (private and public both) and lots of empathetic discussions. You can check out their website and sign up for their listserv: http://www.ppsnk.org/

    Another good resource is the Family Resources Navigators- and they specifically work in the Oakland area as well. http://familyresourcenavigators.org/

    Finally I found invaluable advice from the Early Support Program for Autism in Stanford University which runs special (mostly free) programs for parents of children on the spectrum. They help you navigate the whole search for an ABA provider, practical advice to help your child, among many other things. http://med.stanford.edu/espa.html

    Good luck!

    Nov 30, 2016

    I am a parent of two kids with very high-functioning autism, one in private preschool and one in public elementary school. So I feel pretty well-qualified to answer your questions. First off, the diagnosis is a tough time. It's overwhelming emotionally, and then a logistical challenge to try to figure out services and what to do next. It does get easier as you settle into a new reality and a new routine. Now, to answer your questions:

    1. In my opinion, any supportive pediatrician will do fine. Most developmental pediatricians usually only see patients for diagnosis and follow-up related to the ASD. As long as you have a provider who is supportive and good at providing referrals will work well. Unfortunately, much like when you get sick as an adult, you are responsible for getting a diagnosis and getting additional services needed. This is unfortunately a huge pain and takes much time, especially initially when you're setting up services.

    2. You can typically get the medical diagnosis from a psychologist or a developmental pediatrician. I found most Bay Area developmental pediatricians had extremely long waiting lists. You don't mention cost being a factor, so all the advice I recommend in this message is what I think is best, regardless of cost. I recommend getting your diagnosis from Dr. Brynna Siegel at the Autism Center of Northern California (ACNC) in SF. Not cheap, but in my opinion worth the drive and money. And usually not too long a wait. Once you get the medical diagnosis, you can submit it to your insurance company to request ABA services. If they're covered by your insurance, I recommend BIA. In my opinion, they're the best ABA provider, hands-down.

    3. Regarding switching school districts now--it's hard to predict the future and know what your 3-year-old's needs will be by the time they get to elementary school. Especially after a few years of ABA, you will hopefully be amazed by their progress. My general advice is to do what's best for you and your older child and not make any decisions based on the younger child now. The quality of services is often extremely variable in a district, and you often don't know what a program is like until you start at a specific school. A district can have a great reputation, but the quality of services at the school is really what counts.

    4. Regarding preschool, we also didn't like the choice offered by the district. Another factor in the decision is that an ABA aide can typically accompany your child to a private preschool, but this is not usually allowed at preschools offered by the district. It has been ideal to have my son, who is very high-functioning, surrounded by typically-developing peers and learning from them. And having the ABA provider at school helps him immeasurably. Some schools I know of that have allowed aides to accompany very high-functioning kids in the past are Mustard Seed, Chatham School, Growing Light Montessori and Duck's Nest, but I'm sure there are many more. Your ABA provider may also be able to recommend preschools they think would be a good fit for your son.

    I believe there is a meetup group of high-functioning/asperger's families, but I have no specific recommendations regarding support. ACNC has some great, albeit expensive, programs that may be extremely helpful. Best of luck to your family.

    Dec 2, 2016

    I am not a parent with a child with autism although I am a child development specialist and work with parents of kids with special needs. You should check out Burbank school in Oakland which has a few classes for kids with autism--mostly self-contained. There are options other than Emerson. If it doesn't feel like a good fit, listen to yourself....Please contact the family resource network housed with Bananas. It is staffed by parents of children with special needs and they know a lot about what's available-particularly the director, whose name escapes me for the moment. Also alameda county first five may have some resources but FRN is a good first step for you.

    Stanford has Behavioral and Developmental Pediatricians who see A LOT of young kids with autism. Heidi Feldman, MD is the director there. Absolutely, age three is NOT too early!!! There are lots of opinions about ABA. There are also other techniques which people find helpful if that technique is not to your liking. ABA is mostly what people think about (and about all that insurance will cover)but there are other ways....floor time (Stanley Greenspan) has shown great results with a different stance on what is helpful and normalizing. More family friendly....(in my opinion)

    There are all sorts of support groups out there for parents of kids with special needs. FRN probably knows of these also.

    Good luck....

    Dec 2, 2016

  • Recent ASD Diagnosis for toddler - classes and other resources?

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    Sep 13, 2016

    My toddler was recently diagnosed with ASD. We've worked hard the past few months and have various therapies in order. I'm now looking for lessons or classes that can accommodate my kiddo, particularly dance, swimming, gymnastics/tumbling, or music. I'd like to know if there are any local places that can accommodate a child like mine into a class or lesson. My toddler is a ton of fun but has difficulty following instructions and requires patient instructors. I've looked up a few places but reviews tend to be dated. 

    I'm also interested in potentially joining a support group for parents with kids on the spectrum. If there are any in Oakland, Emeryville or Berkeley, I'd love to hear about them.

    Thanks!

    Sep 13, 2016

    A couple of good places to find resources & support:

    East Bay Autism Parents (Facebook group)

    Family Resource Navigators (they have a 6 week ASD parenting class that's helpful, among other supports)

    For classes, a few places to start are:

    -Berkeley YMCA swim & gym class for special needs kids ages 2-6.

    -Head over heels has special needs tumbling classes

    -Pediatric Motor playground in Lafayette runs small group classes for OT, including gross & fine motor skills & sensory integration.

    I'm sure there are so many more out there, as well. Happy to chat privately, if you like. I have four kids, ages 15 months to 5 yo. Two of them  were diagnosed with ASD this year, so we're just starting out with figuring this stuff out, too.

    Sep 21, 2016

    Is your child going to receive ABA? If so, most places will allow kids to attend classes with their ABA therapist, which I would highly recommend. Your child is liable to get much more out of the class. As for specific classes, I recommend University Village gymnastics and music classes with Melita (melitamusic.com) in Berkeley.

    Sep 25, 2016

Archived Q&A and Reviews

Questions

Resources for 2.5-year-old diagnosed with autism

July 2013

My 2.5-year-old nephew has been diagnosed with autism. He is barely speaking, is developmentally delayed (late hitting most milestones), rates low on adaptive skills, and has some stereotypical behavior (hand flapping), but he seems happy and is very affectionate with his parents (shy with others). He is just starting ABA services through BIA and speech therapy through Easter Seals. We are also beginning the IEP process (parents live in Oakland, but might be willing to move if another district offers better services). I'm looking for advice on parent advocates/lawyers (and how important it is to hire and consult with one), service providers, preschools, support groups for the parents, informative/reliable/helpful resources (books, websites), activities to do with my nephew to help him develop, and how to be a good aunt in this situation. I know that's a lot, but if you have experience with a similar child I'd appreciate any advice you could give in any or all of these areas. Thanks. Concerned Aunt

Our service coordinator from GGRC highly recommended we go to JumpStart (http://www.autismjumpstart.org) -- they are in San Francisco. Maybe you guys have something similar in the east bay or maybe you guys could go to JumpStart. It's a one-week, intensive training program for parents/adults of autistic children. The therapists there are incredibly nice and knowledgeable. I personally found the course very empowering. It taught me better and proper ways to better communicate with my 2yo ASD child -- both verbally and non-verbally. The course is very intensive. I was overwhelmed at first but it's really worth it. mom000

Hi there.. The hardest part is in the beginning (when BIA comes into the home, coordinating therapy ) your sibling is off to a great start! I worked for BIA for years and they are amazing. You'll see a lot of progress. I've worked independently for 10 plus years in the field. I'd be happy to answer any questions or advice on IEPs, advocacy etc. Lindsay

Please have your nephew's parents contact Sandy Westlie (director) at Peter Pan Preschool in El Cerrito (not to be confused with Peter Pan in Oakland!) She will be a valuable resource. My child is not on the spectrum so I cannot speak to your nephew's situation directly, but other parents at the school have expressed that Teacher Sandy was the best thing that ever happened to their family when they were struggling to address the needs of their autistic-spectrum child. (It doesn't matter that your nephew is in a different county. At the very least, Teacher Sandy will be able to give you great information about resources.) Peter Pan's number is (510) 234-5918. Best to call between 3-4pm on a school day. School will be out until the beginning of Sept. (Feel free to ask moderator for my email if you want more contact info.) Maia

I've previously recommended on BPN the book Parenting Your Child with Autism which was written by a good friend and colleague of mine who also happens to be the parent of one child diagnosed with autism and one diagnosed with Aspergers. The book starts with the premise that there is no ''prescription'' for how to handle your child's needs, and as such they help explore ideas and resources so that you can evolve your own strategy for what is going to work for your family. The book is evidence-based (with references) but it's not too jargony and it's an extremely readable work. You can find the book on Amazon: http://www.amazon.com/Parenting-Your-Child-Autism-Strategies/dp/1608821900/ June W.

 

Recent autism dx for 7.5 year old - feeling lost

July 2012

Our son , 7 1/2, was recently diagnosed with Autism. Would love to meet other like families to talk & share. We are reeling still and feel a bit lost. We're in Berkeley. J.

A good friend and colleague of mine who also happens to be the parent of one child diagnosed with autism and one diagnosed with Aspergers recently co- authored a wonderful book called Parenting Your Child with Autism. The book starts with the premise that there is no ''prescription'' for how to handle your child's needs, and as such they help explore ideas and resources so that you can evolve your own strategy for what is going to work for your family. The book is evidence-based (with references) but it's not too jargony and it's an extremely readable work. You can find the book on Amazon.

I know from experience that you are at the start of a difficult path, but reaching out for support is so wise. I have a 15 year old autistic son and my learning curve has been steep and rocky! I'd be happy to get together with you and also know others who might be interested. Sending you good thoughts.

Need to get plugged in to communities and resources

Feb 2011

My son was diagnosed with high-functioning Autism a few months ago on his 3rd birthday. I really want and need to get plugged into Autism resources, communities and groups. I could probably post a question a week on BPN, but recognize there is probably a better forum for all of my Autism-specific questions. So please share, point me in the right direction... online boards, communities, blogs, books, groups conferences. Also, is there anything local/east bay I should know about?

As background to help guide recommendations, we anticipated the diagnosis and have been doing intensive ABA and speech early intervention for the last year (through RCEB). We're ready to move forward, eyes open and want to have all of the resources possible at our disposal as we do so. I see that my son has a beautiful and unique mind and I want to celebrate and foster it, while addressing challenges that might get in the way of his learning or making friends. He's really high functioning, and since he's only three, it's hard to know what that really means.

I really appreciate and look forward to your recommendations. -Mom of a High-functioning Autistic Boy

Hello Mom, I too have a 6 year old son with autism and I live in the east bay. Have you heard of the CARE parent network? http://www.contracostaarc.com/html/care.html They have monthly support group meetings and tons of resources. Also the Autism Family Support Project at We Care in Concord http://www.wecarebmcc.org/autism_project/afsp.htm They have support groups and autism family friendly events. Also there is the UC Davis MIND Institute http://www.ucdmc.ucdavis.edu/mindinstitute/ and if you go to their web site there are plenty of new autism studies you can participate in. We are currently participating in the Curemark study, a study on a new enzyme used to treat autism. Have you tried a DAN doctor yet? http://www.autism.com So many things to list here better to email me! Sounds like you are on the right path though. Hugs! Alicia

When my son was first diagnosed I spent a whole lotta time at http://www.autism-pdd.net/forum/default.asp. I could probably list about 8 million different blogs for you, but I'll save the space and ask you to email me if you're interested; I've also recently found a thriving autism community on Twitter. You didn't mention your school district, but if you're at BUSD there's BSPED: http://www.berkeley.net/index.php?page=bsped. I hope this is helpful, there's a ton of stuff out there, if you need somebody to help guide your way, feel free to contact me directly. I've been there! Jill

There was a really great TED talk about research at Harvard on the autism spectrum. Half of kids in the study actually had brain seizures (as shown by EEG) and came to full functioning with medication. Here's the link: http://www.ted.com/talks/lang/eng/aditi_shankardass_a_second_opinion_on_learning_disorders.html

Not that this changes the need for other resources, just thought her perspective as a neurobiologist was useful. good luck. anon

I'm forwarding here a reply for my request for resources from another ''autism mom''. Reply to me directly and I'll connect you to Anne if you so desire. Good luck, Richard

''Well, both the autism e-mail lists I am on are based in Washington, so a lot of the announcements & so forth would not be helpful to her. I'm thinking that a local support group might be more appropriate for her. Fortunately, they are springing up all over the place. (Well, it's not really fortunate, because it means that more & more people are being affected by autism!)

If she goes to www.tacanow.org (Talk About Curing Autism Now), they have a list of local groups. And they have some information on their site.

The Autism Research Institute has a site at www.autism.com.

And there is also www.generationrescue.org , which can set a person up with a ''Rescue Angel'' in her area -- an autism parent who has been in the trenches a while, & can offer advice & support. (This is the group that Jenny McCarthy has thrown her support behind.)

Do warn this woman that people in the autism community are VERY opinionated, & everybody thinks that what worked best for HIS kid is what EVERYBODY should do. The fact is that autism is VERY complicated, & there are a lot of nuances & variables. Tell her not to let anybody push her around. Anne

My brother has an autistic son diagnosed around 3 years old when he suddenly stopped speaking. He and his wife turned to the UCLA Medical Center for help and seemed quite satisfied there. This was over the past 20 years so things may have changed but it is worth a look I think. anon

One great resource is http://www.aspergersresource.org/. This website is all-inclusive and provides Bay Area resources. Hope this helps!

I'm sure you'll get a lot of responses, but let me add mine to the mix.

My son was diagnosed with HFA around his third birthday as well. He's seven now and doing great in a mainstream 1st grade class. Early intervention really is key, in my experience, as is a positive outlook of acceptance and a love for your child's gifts and strengths. Sounds like you've got both of those!

Check out The Thinking Person's Guide to Autism, website and community with national reach, run by a bunch of local Bay Area folks. They have essays and articles every day by parents, practitioners and people who themselves are on the autism spectrum. It's a wonderful source of positive support and science-based information. http://thinkingautismguide.blogspot.com/

The book ''Quirky, Yes. Hopeless, No'' has tons of advice and ideas for working with everyday challenges.

Finally, I write about our family's experience at http://hyperlexicon.blogspot.com/ and would be glad to answer any additional questions that come up for you via email. You're not alone! Christa

Two resources:

1) The Family Resource Network, in the Bananas building on Claremont Ave. near the DMV - http://www.frnoakland.org/

and 2) Einstein's Clubhouse, info about homeschooling Asperger kids in Berkeley, online at http://EinsteinsClubhouse.org John

Books & other resources for coping with autism

April 2010

We are finally in a place where we sort of know what we're dealing with and starting to understand what we can do to help manage some of my son's issues, but I feel completely traumatized by the last 5 years of meltdowns, being stared at, the daily struggles, etc. etc. I'm hoping there are some books, like other parents' stories that can help me start a little bit of my own emotional recovery and get some better perspective. I'm hoping to start with a cheaper alternative to therapy for now. Any recommendations? anon

Please read this compelling blog: http://hyperlexicon.blogspot.com/

East Bay writer/BPN mom Christa Dahlstrom does a great job of describing the fears, challenges, and fun of parenting a 6-year-old on the spectrum over the last three years or so. I'd recommend you check out some of the excellent blogs she links to, and/or contact Christa via on her her 'comments' section. Best of luck to you & your child.

I don't know how old your child is or what area of the spectrum you are dealing with, but I went through much the same with my son, who has mild Aspergers. When he was 2,3, and 4 and even older I couldn't take him into any store or restaurant without him having a tantrum and shrieking, and not hearing a word I said to him. Naturally everyone was staring at me like I didn't know how to control my kid. Now he is 10 and 90% of the time he is pure joy. The rest we are dealing with and he is aware of his issues and working on it. It gets so much better. That is my message for you. He/she is probably very intelligent so if you nurture that side of him/her you are on the right track. Read aloud and take him/her to the library a lot. And hugs, hug him/her when he/she is getting over his/her tantrum. Don't listen to the 'experts' who tell you to ignore him/her. Hug him/her. They crave that. I wish you lots of patience and love. been there

Helping my sister with her autistic 5-year-old

April 2007

I am very worried about my sister who is having a hard time coping with her autistic 5 year old son. I am looking for advice and recommendations for resources in Santa Cruz or San Jose. I think there are many issues going on, including my sister's depression and isolation which makes it hard for her to get good help (she is married and has a supportive husband, but it is clearly not enough). She is pretty pessimistic about his chances for sucess in public school and feels her only hope is to home school him. Another issue is what can I and our other family members do to help her and her son? She has trouble asking and when I make suggestions I often feel as if I am judging her for not doing things right. I want to support her but I also think she needs to deal with her depression so that she can be a better advocate for her son. She has had horrible experiences with doctors and meds, so I don't know how likely she would be to seek help from a psychiatist. I feel as if my post leaves very little for people to suggest, but I am hopeful. Thanks for you help. anon

First, I want to say that it's so GREAT of you to want to reach out to your sister and help her. Having a child with autism is extremely difficult and she needs your support, it's wonderful that you care so much about her and her son. I don't think your post left little for me to suggest, but without knowing you or your sister or her son, I can only tell you what has worked and not worked for me with my various extended family members.

My first thought is that she probably does feel judged by your well meaning suggestions. I'm not saying that you ARE judging her, but there's a good chance that she already feels judged by the rest of the world, and therefore does from you, too. This is hard stuff, in addition to being depressed, she might be blaming herself, she might be resentful of your children (if you have them) who are developing typically. She might feel isolated or lonely or guilty or angry or just so many other things.

Therefore, I would recommend not making any suggestions. Instead, ask her what she needs from you. Something like ''I love you and I want to help. What can I do?'' And say it a lot, particularly if she has trouble asking for help, she could say ''nothing'' at first, but after the 10th time of asking she might tell you something. Make sure she knows that you're there to support her and not to tell her what she's doing wrong (not that you are! That's just how she might see it.)

Secondly, I would learn all that you can about autism. Not so that you can teach her anything, but just so that you can be armed with knowledge. And tell her you want to learn. Ask her what her most important resources are, what websites or books you can read. Make sure she knows that you want to make an effort so that you can help her.

And, she needs support, but not from you; from other parents who have been there. And the beauty of the internet is that it doesn't matter where you live, you can find people anywhere in the world. I have a large network of friends with autistic children, and very rarely do I ever see or talk to them in person. They live all over the world, and yet we ''speak'' every day. Some possible resources:

http://php.com/ - Parents Helping Parents. Located in the South Bay somewhere, it's the best chance of finding real life people to connect with

http://autism-pdd.net/ - Lots of good info, including a very active support forum.

I have more, but none that I'm comfortable posting to the world. Feel free to contact me directly if you want more info or just want to talk some more. Good luck!! Jill

There should be a regional center in her area that can offer some sort of assistance. kevin

I think you and I must be in parallel universes. My sister has very similar problems (for similar reasons) with her almost five year old autistic son. I recommend that your sister contact SPIN (Special Parents Information Network) located in Santa Cruz County. Contact them at www.spinsc.org or (831)722- 2800. She can also contact San Andreas Regional Center to see about qualifying for their services. She can also call the Santa Cruz County Office of Education for help through the school district. Good luck, I understand your desire to help and the frustration and sadness that go along with watching a loved one struggle with obtaining help for their child. Feeling helpless too

 

My 2 1/2 year old was just diagnosed with autism

May 2006

My 2 1/2 year old son was just diagnosed with autism and my husband and I feel at such a loss regarding support, resources, tips, advice. We have another appointment this week to find out more about therapies, but we just feel like we are floundering in limbo and would love if anyone could point us in the right direction about what we should be looking for in regards to therapies, support networks, etc.

We live in Walnut Creek but will travel whereever we need to to find out more or to help our son. He was supposed to start preschool in the fall, but my hunch is that we will need to look for something that better meets his needs and would love any advice from parents who are in or who might have been in a similar situation.

Our hearts are breaking that we didn't realize there was a problem sooner..I guess we were guilty of just assuming these traits (limited eye contact,delayed speech, little interest in other kids, etc) were simply indicative of his personality...having no idea that they were such red flags for autism. So at this point we want to do whatever we can to learn what we can do for him.

From,
A sad Mom who knows things will get better...but is just crushed right now
T's Mom

Breathe -

I can imagine that this kind of news is hard to swallow. Blissfully there is much more we know about Autism now than a decade or two ago, and there are different treatment approaches to choose from.

You may get MANY responses, so I will be brief

An excellent consultant in this area is Dr. Ilene Lee - email is ilenelee[at]aol.com. She specializes in Greenspans floor work.

Another approach is the work of the KAUFMANs of the Option Institute. You may find their book SON RISE intriguing. They developed their method for working with their son and totally CURED the autism ! I met him when he was in his late teens. They have an institute on the East Coast. You can Google them.

Treatment gets costly but early intervention will make a WORLD OF DIFFERENCE.

Dr. Ariel Lenchner

(my specialty is early literacy and learning disabilities)

First, let me say that I'm so sorry you're having to go through this. Having lived with the dx for about a year and a half, I can say that the hardest part about the whole thing is the heartbreak of it all. I worry all the time about how he'll be when he grows up, how other people will judge him, how other people judge him now, how he feels about it all, etc.

You have so many options right now and I'm sure it feels overwhelming. In fact, I'm pretty sure I posted a message similar to yours when we first found out. Your son is under 3 so you qualify for services at The Regional Center, which should be the first place you call if you haven't called them already. Please feel free to contact me directly and I'm happy to share with you everything I know and have learned over the years. I've been where you are and I'm more than happy to help!! Jill

Hi, You are right, it will get better. There is a myriad of information and new therpies out there for this condition. You are not alone, the percentage increase in Autism in the last 10 years is staggering. There should be regional centers in your area that can offer help and advice. Parents Helping Parents website is usefull. They are located in San Jose. Occupational and Speech therapy are very usefull, along with dietary modifications,such as gluten free and caseinne free diets. There are doctors that specialize in DAN (defeat autism now) protocals, my therapy-The Sensory Learning System has proven very valuable www.sensorylearning.com. There is also Auditory Integrative Training, and hyperbaric oxygen therapy to name a few. The bottom line is Keep Trying, the therapies and dietary modifications do improve quality of life. Bryan

You may not realize it now, but the fact that you recognized the autism at 2 1/2 puts your child at a great advantage. He is able to get the therapies he needs much earlier than kids who are diagnosed at 5 and 6 years old. My son was diagnosed at 3.9 years old and although the ''autism'' doesn't go away, I see his potential now and I know it's because he got a head start. You have an even earlier start. I was sad too, my feelings were very similar to yours. So I will just say what I wish someone would have told me at that time of getting the diagnosis: Instead of looking at what he can't do, think of others ways he will be able to do it. You'll spend the rest of his life looking for alternate ways for him to learn. You will appreciate every accomplishment, not just the ones that every other parent witnesses and you will never take another one for granted. He is a special blessing and I have learned so much from mine in his eight years, so much that I wouldn't change a thing about him. Mom to a PDD Kid

I'm very sorry to read about your difficult situation. Although I do not know much about the topic, I recall Mothering Magazine issued a Special Autism Edition in their Jan-Feb 2006 publication. You can buy back issues at mothering.com. The site may have further resources to help, too. And I am sure this community will give you plenty of useful advice. anon

I read your post and had to reply. I recommend calling the Department of Communicative Disorders at Cal State East Bay (Hayward) and speaking to Audra Elliott SLP-CCC for resource information. Additionally, web information is invaluable. I actually have several excellent autism books/resources that I could allow you to copy as well as some websites that I have found to be helpful. There are MANY therapy choices available and it will just involve alot of research on your part. Unfortunately, there are no easy answers here. I wish you luck. sam

Was your son diagnosed with Autism from a private developmental pediatrician or neurologist or from the Regional Center?? Whoever gave your son the diagnosis should have also given you or recommended a developmental program to address his needs. If you are connected with Regional Center, your case manager would be able to assist you with a program (no cost to you). This is an organization that assists the developmentally disabled population and in your son's case (early intervention)...can set up a program for him. Most families chose an ABA program along with speech and occupational therapy if needed. It depends on your child's needs. There are also a lot of support groups out there. You can seek services independently but it can be very costly. If you are not connected with the Regional Center of the East Bay...the number is 510-383-1200. Ask for the intake/ assessment unit for children under three. good luck to you. Anonymous

First of all, there's a new novel out called Daniel Isn't Talking that I think would be great for inspiration. Also, there are a number of list servs on the web that can be very useful with things like locating resources, getting information, etc. If you can't find them you can email me at www.ayeletwaldman.com and I'll hook you up with a very experienced and generous mom. Ayelet

Hi - I am an Occupational Therapist who has worked with many children with Autism. I'm sure you are freaked out and sad and going through your own process right now. But let me just chime in and say that the Autistic kids I have worked with have all been such happy little souls that I never felt sorry for them for a minute. It's the hardest for the parents to readjust their expectations, negotiate therapy, home programs, etc. But there is so much amazing work being done with Autism right now that you will be able to find lots of tools, therapists and teachers to work with you to make his life great. For now I suggest you call Regional Center of the East Bay and ask them how you become a client. Typically you get a referal from your doctor. Regional Center provides in home therapy to kids until they are 3 and in the school system. You will have access to speech therapy, occupational therapy and a home based teacher to come out and give you things to work on at home. So call them right away so he can get care before he's 3. When he turns 3 he will receive school based help from the school district. And I would try to just keep enjoying and loving all the things you love about your son before you even had a diagnosis for him. The diagnosis will help you/him get the help he needs to flourish, but don't let it limit his unlimited potential as a person. Best of luck, Sirena

There is hope for your son! There is a wonderful Doctor who is specialized in working with kids who are autistic. Many of my friends are in the same situation that you are and have greatly benefited from seeing Dr. Dave Traver. Best of luck to you and your family. Here is his contact information:
Dr. Dave Traver M.D., FAAP 1261 E. Hillsdale Blvd. Foster City CA 94404 650-341-5300 phone 
Jenny

You'll probably get a lot of recommended reading but I would be sure to read The Impossible Cure by Amy Lansky and then go see a classical homeopath Into the alternatives

My daughter was also diagnosed at 2.5, and I remember that fear and guilt like it was yesterday. My heart goes out to you! Now, a year and a half later, I have learned so much, grown so much, and seen so much amazing power and advancement in my daughter that those first days seem like a lifetime ago. You are not alone! There are so many wonderful educators and resources out there, and you CAN access them. Please write me, and I will give you all the help I possibly can Tara

May 15th TIME Magazine had an interesting article on autism and a model treatment program in the schools. The good news is your discovering it at such a young age, there are volumes of resources and treatments.

There is such a wide range of functioning on the spectrum of autism it's difficult to recommend the best treatment. 50% of autistic children will never speak according to 1995 statistic I learned at a PECS conference for lower functioning autistic children. It sounds like your child has some speech.

Hopkins pre school in Berkeley has provided services (including speech therapy)for many children on the spectrum starting at age 3. Alta Bates in Berkeley also has treated many early intervention and pre school age children. For speech therapy Michelle Garcia Winner is one of the best known in the area (San Jose)who specializes in high functioning autism and non verbal disorders. It sounds like your child needs lots of verbal language therapy, pretend play, turn taking, and eye contact. She may be someone to keep in mind when he is older, or for a referral. Eye contact may be the only socialization goal to work on and expect results for age 2-3. Several children without Autism do not engage in interactive play and interactive conversation until age 3-5.

I'm not sure of resources in the Walnut Creek Area, but my understanding is Insurance will cover speech therapy for children younger than school age.

Hope this helps! Pamela

I am sorry to hear about your baby. I too have a child with autism. I would urge you to contact the autism research center in San Diego. You can find them on the internet. Also find your local TACA chapter (Talk About Curing Autism Now). They will be very helpful and even have a new parents guide. There are lots of advances being made in the treatment of autism. I have personally attended a Defeat Autism Now where I was able to see 10 children on stage who have recovered. There are 1000 documented cases of recovery. Good luck to you and feel free to email me off list if you wish. Kathie

Our 3-year-old has just been diagnosed with PDD-NOS

Jan 2006

Our three year old son has just been diagnosed with PDD-NOS. We are extremely upset and feel at a loss about what to do next. We are currently waiting for an assesment from OUSD but in the mean time were wondering if anyone in the BPN had any advice about behavioural techniques we can try at home to get us started while we wait for our assesment. Any advice about good books or other resources on the subject? Support groups etc. Most resources I have found on-line seem to address autism alone which is not the part of the spectrum that he falls under. Worried

While you're waiting for OUSD to complete its assessment -- and there is a specific time period in which it must be completed, under federal law (see http://www.wrightslaw.com) -- I strongly suggest that you seek counseling immediately with a therapist who understands special needs. Locally, Dr. Lynda Kravitz in Piedmont (510.420.0888/drkravitz [at] sbcglobal.net) counsels individuals, couples and groups.

As for behavioral help, look into Stanley Greenspan's books and don't be afraid to consider therapies that are used for autism. These range from step-by-step recipes for tasks to learning to read body language to understanding what causes behavior and how to encourage or discourage it. Take a look at ''The Out-Of-Sync Child'' and Carol Gray's Social Stories. Disregard anything by Bryna Siegel; her thinking is outdated at best.

Also, it would be prudent to consult with a special education advocate. Parents and school district administrators work best together when they treat each other as businesses, but it's difficult to not take it personally. An advocate will help you stay calm and focus. There are many advocates; an excellent one is Dana Lear, http://www.negotiatingthemaze.org Anonymous

My 4 year old is also diagnosed pdd-nos. I can totally sympathize with the pain, anger and shock you must be feeling right now. Know that you are not alone, there are a lot of other parents who have been there and who are there right now. Know, also, that a diagnosis of autism spectrum disorder does not mean that your son will not live a happy and fulfilling life. I know it probably feels like the end of the world (it did for me!) but it's not and with support you can get through this.

It's hard to give advice without knowing specifically which issues you're facing because the spectrum is large and every kid is different. My son receives 15 hours a week of intensive therapy (called ABA), and if I had to do it over again, I would have started it immediately after receiving his diagnosis. I was a little bit in denial about it, but at some point it became impossible to stay there. Since starting ABA he's made at least 9-12 month's worth of progress in a 3 month period.

Check out autism-pdd.net for lots of information and an online support forum. Don't just rely on the school district for an assessment, call Behavioral Intervention Associates (www.bia4autism.org) for more information about therapies and treatment. There's an online support forum in the Bay Area (I think it's called specialneedsnetwork at Yahoo groups, I'm sure somebody will post the address). I also have a support group that meets every other week at my house. Please feel free to contact me directly if you want to ask questions of somebody who has been there or if you want to come to our group. Jill

Dear ''worried,'' I am a parent of a child who has a similar diagnosis and I know how overwhelming it is when you first find out (and how discouraging it is to have such a non specific, not very helpful diagnosis). I am currently running a free program at the Berkeley YMCA for children (ages 3-4) who have developmental delays. It is called the Swim and Gym Program. It includes a swim lesson, tumbling class and a support group for the parents (childcare included). The program is on Thursdays from 1pm until 3:30. Before I was the coordinator for this program, my son and I were participants. It was really a life saver for both of us. Please feel to call me and leave me your number so I can call you and tell you about the program. Or,if you are not ready or able to dive into the program, but would like some resources, I can give those to you. Hang in there, Rachel.

You can try a book, The OASIS Guide to Asperger Syndrome by Bashe & Kirby. Also, check out the MIND Institute at UC Davis. Great websites about learning disabilities and developmental issues are Schwablearning.org, LDonline and Allkindsofminds.org. a school psychologist

Hi -- I'm not familiar with OUSD but have first hand experience with PDD-NOS (my son was diagnosed at age 3 and is now 6). Send me a note and I'll send you my phone number and I can give you some guidance. Judy

Dear Worried, Your child is so young that it's hard for anyone to give him a more concrete diagnosis! We were there at age 4, and also had the ''not autism but something'' diagnosis. My advice to you is to review some of the autism material, selecting by symptom grouping. For example, if your child has a speech delay, get him speech therapy asap! and private, one-on-one to supplement if you can afford it.

If you feel he has a hard time in social settings, or with personal control (tantrums etc) have a look at the sections of autism writings that deal with this topic. If he has sensory issues and could benefit from OT, this is often covered by group insurance plans.

My son is 10, and we have pursued a lot of similar therapies in the 6+ years since his diagnosis with PDD-NOS. Now he has moved out of that diagnosis, and we work under ''learning disability'' but same basic symptom groups: Social pragmatic language and social skills, horrible handwriting / drawing (fine motor skills) and some other learning difficulties due to different brain wiring. But it will be years before you can get to such specifics!

Things that often help PDD-NOS as well as autism kids: routine, routine, routine; multiple sensory paths of learning, like saying, drawing/writing AND movement all to learn a given point; learning with music; social stories; lots of sensory input, if he's not defensive about touching.

Some books we have used (do library first! before buying any)

  • The Child with Special Needs
  • Building Bridges
  • The Out of Sync Child
  • The Explosive Child
  • How to Talk so Kids Will Listen (and Listen so Kids Will Talk)
  • My Social Stories Book 

Lastly, I will be happy to help you if you would like. My son's a lot older, but I have years of experience dealing with OUSD. There are plenty of other OUSD parents out there who can help, too. Please come to the OUSD CAC meetings - the CAC is like the PTA for special needs kids in OUSD. The meetings are usually the 1st Monday of the month. Good luck and continue to reach out for help. - Nancy

I would suggest that you look into behavioral therapies even if your child does not have a full-blown diagnosis of autism. Any worthwhile behaviorist will base treatment on goals indicated by your child's behavior and needs, not on diagnosis. Good luck! anonymous

What a difficult time this must be for your family. One helpful book with ideas for parents to use at home is ''More Than Words'' from the Hanen Centre. I am a speech language pathologist, and the parents of children with PDD-NOS have seen positive changes in their children and enjoyed the activities from this book. I (along with many SLPs) use lots of their ideas in therapy as well. Something else to consider: Assuming your son's language skills are behind for his age, you might want to find out if speech language therapy is a covered benefit under your health insurance and request a referral from your son's pediatrician. That could be a good way to get some help while you wait for school services to begin. Nora

Resources for my 25-y-o brother coming from overseas

Feb 2006

I am looking for a private special school for my brother who is a bit autistic and has epilepsy. He will be here with his tourist visa while staying at my place in Rockridge during this summer 06. He is 25 years old and speaks only Korean but very familiar with English language. He is a dedicated Christian, who is warm at heart and very innocent, almost like a boy. In Korea where he lives, there are almost no opportunities or support for people with mental disabilities. I am an only family he's got and luckily I was born here in the states that I wanted to extend some help for him here in the states. I understand that he won't be able to get into state-run programs such by east bay regional office, because he isn't ''american'. So my challenge is to find private organization or institution. However, I am having a hard time with getting such information. I would really appreciate any advice or information if possible. loving sister

You could try contacting ILRC (Independent Living Resource Center). website: http://www.ilrcsf.org 649 Mission Street, 3rd Floor, San Francisco, CA 94105-4128 (415) 543-6222 \x96 Fax (415) 543-6318 - TTY 543-6698 Email: info[at]ilrcsf.org

There is also the Family Resource Network at 5232 Claremont Avenue. Oakland, CA 94618. Tel: 510/547-7322 website: www.frcnca.org/region3.html I found the staff at FRN to be really helpful. You can make an appointment or drop in and talk to someone about your situation and they will link you up with different services or provide you with information about different programs.

It might help too if you are clear about what you want for your brother, i.e. to learn English, to socialize, to have some fun things to do during the day, to get physical or occupational therapy, do art projects, work on academic skills, etc.. Good luck and best wishes. mma