Autism Assessment for School-Aged Children

Parent Q&A

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  • Dear Neuro-divergent Community:

    I am that parent going through school IEP Process for the first time. So frustrating!!  My 5 year old boy is autistic and has hypotonia (low muscle tone throughout his body) so we need Occupational Therapy (OT). The school district has denied OT services but has agreed to pay for/fund the IEE-Occupational Therapy assessment. So I am reaching out to you and hoping you could share any recommendations or point me in the right direction.  If you have any experience with or could recommend Occupational Therapists (preferably neurodiversity affirming), who might be able to perform an IEE for OT, I would be so grateful!!

    Kindly & Grateful, Pat & Jannie

    What school district is your son in?   Try reaching out to your healthcare provider and get recommendations for psychologists that can perform the IEE.  You can also contact the Bay Area Regional Center for recommendations.  My son has been receiving both OT and Speech Therapy for Autism since he was 5 years old and I  can tell you the progress has been amazing.  Good luck! 

    Hi Pat, I highly recommend James Bylund at the 

    Bylund clinic, they are located in Walnut Creek. They did my son’ assessment, they came to the final IEP and put together all the accommodations that he needs to have in the classroom beautifully.  I know that this is very stressful, this is my email if you need more info 

    memenytato [at] gmail.com 

    My main advice would be to contact DREDF and ask to speak to a parent advocate to help you negotiate the process.

    I am not sure Outdoor Kids Occupational Therapy  this service, but likely they can recommend someone.

    Elisabeth Meikle is an awesome OT my kid works with. I’m not sure if she does an IEE but she would be a good person to reach out to. She also works for outdoor kids, which is an incredible outdoor OT program. I highly recommend you look into outdoor kids OT as a supplement to whatever your district (hopefully) offers during school hours.

    Full circle ot is another OT group that has been recommended to me by multiple people I trust. I have not worked directly with them, but they might be worth checking out. 
     

    good luck! 

  • We have wondered for a long time whether we need extra help for my 7-year-old, because (on top of many delightful qualities) he has really challenged us with things like inflexibility (getting obsessed with a certain thing he thinks must happen NOW), extreme emotional upsets, sensory seeking around touch, and low responsiveness to people’s emotional cues. He has a terribly hard time stopping what he’s doing when people get annoyed or upset, though he can be very thoughtful about others when it doesn’t depend on responding to their feelings “in the moment.”

    He goes to a very small school, and things are going well there—he is highly verbal and quick academically, and after a slow start socially, he now plays happily there. At home though, these issues can be pretty extreme and draining to manage. 

    We decided to pursue an evaluation for high-function autism, in hopes of getting insights that help us to cope better and give him the best support we can. We are on the waiting list for an evaluation at Stanford Developmental Pediatrics, and I wanted to ask—have people had good experiences with evaluation there? Did the process help you understand your child better? 

    I am hoping for understanding that would help us nurture skills that can be nurtured, develop alternative strategies as needed, and build on his strengths, so that one way or another he builds the skills he needs to navigate life’s difficulties and build healthy relationships with others. 

    Thanks in advance for anything you can share! 

    I  didn't use Stanford.  My family has Kaiser.  My son was evaluated when he was 5 and now at 9 he is even more high functioning than he was back then.   It's very useful to know and if he does have Autism they can refer you to ABA therapy which will help with management of the behaviors at home.   Good luck! 

    My son is 9 years old and has high functioning autism and sensory processing disorder (which has lessened in recent years). I can’t speak on Stanford’s evaluation since I did his at Sutter. However, the best thing that has worked for my son is his social skills class. I would suggest looking into it while you wait for the evaluation. Although, some social skills classes require an autism or adhd diagnosis for it to be covered by insurance. You could probably pay out of pocket if you’re able. My son has gone to Seven Bridges Therapy in Oakland since age 4 and I feel like he’s learned the most from it out of all his therapies. Occupational therapy helped with his sensory issues and taught him how to learn what his body needs and how to manage them. That also usually needs a diagnosis, but definitely helped.

    I hope Stanford is getting better (and that parents who've had good luck there can share an update), but as recently as eight years ago I found them not quite up to speed in recognizing HFA (Asperger's). They tended to miss it or misdiagnose. (My experience is both as a mother and psychologist.) I'd like to recommend a helpful book for parents (and school staff): Beyond Rain Man: What One Psychologist Learned Raising a Son on the Autism Spectrum by Anne Ross. Easy to order through IndieBound.org (and your local indie bookstore). 

    I just want to say, well done, Mom! Keep advocating, learning, and growing! I have two children with ASD - aged 9 and 13, and it has been quite a journey! While it presents many challenges, there are also numerous rewards. One of the most fulfilling aspects is that both of our children are aware of their diagnoses. We frequently discuss the struggles and strengths associated with ASD.

    It is something they take pride in! My advice would be to continue educating yourself about ASD so that you can best support and accommodate your child's needs. Additionally, keep an open dialogue with your child about it. This not only helps them understand themselves better but also navigate their world more effectively. Best wishes to you and your child.

     

  • Has anyone sought a second opinion regarding an autism diagnosis for a school age child or have suggestions for how to pursue one?  Would we share the full neuropsych report and testing results that we have or would the child need to undergo assessment again?  Recommendations for providers would also be welcome.  Many thanks.

    Hi-

    Kim Thompson from www.eastbayadhd.com works with Autism- she worked with our kid and was fantastic. I don't know if you would share the report and testing results or not- you'd have to ask her. 

    Good luck in your search!

  • Hi friends -- autistic parent here with two young kids who I strongly suspect are also autistic. We would like to pursue diagnosis to open doors for accommodations at school and also just to be better equipped to support our kids; we have absolutely no interest in ABA-type therapy or working with anyone who'd pathologize our kids' totally normal neurotypes. I know there are neurodiversity-affirming developmental pediatricians or psychologists out there--anyone had any luck finding one in the Bay? Thanks so much!

    Hi!  You didn't mention the ages of your children, but if they are at least 3 years old they can get free assessments through your local school district.  You could also ask your pediatrician for an assessment.  Otherwise, you can go the private route.   Good Luck!

    Hello! My brother and I are neurodivergent as well. :)

    Assuming you have Kaiser or  willing to cash pay, my favorite is Dr. Chambers: https://beaminghealth.com/providers/gerard-chambers-psyd-phd-san-jose-ca

    He's exceptional and I hear nothing but great things from families about him.

    Our child had an assessment with Lisa Greenberg in Oakland and we found her to be very open, respectful and affirming. She is also exceptionally smart and experienced so we learned a lot from her throughout the assessment process.

    I would try Osher center at UCSF-- in particular Dr. Sanford Newmark. He specializes in autism + ADHD.  He came highly recommended and it took us a about 8 months to get in. They take most major insurances and they do a thorough screening process. We saw him for ADHD and although we did the whole holistic approach in the beginning while we were waiting to be seen by Dr. Newmark, we had come as far as we could go.  He did meet with my son for about 3 hours to do the initial assessment and also ordered an allergy panel due to my sons eczema. We tried elimination diet etc, but ultimately went with meds.  I like his whole child approach + giving insights to behaviors and strategies to better support my sons diagnosis. It does take a while to be seen, but once you're a patient you have no problem getting appointments.

    https://www.ucsfbenioffchildrens.org/providers/dr-sanford-newmark

    Psychologists for assessment: Alex Klein, Rebecca Schwartz (though she might not be seeing new people). 

    A few places/people who might be able to point you in the right direction for ND-affirming services 

    Embracing Autism services: https://embracingautismservices.com

    Spirited Play Labs https://spiritedplaylabs.com

    Full Circle Collective OT 

    Though if you want accommodations in school, your school district (or regional center if your kids are really young) may want to do their own assessment as part of the IEP process. 

    My autistic four-year-old was diagnosed about a year ago and it has been a trial keeping him away from compliance-based approaches. 

    You’re welcome to contact me directly if you want to chat! 

    Molly 

    We were very happy working with psychologist Amy Parlin Feldman at Summit Center (in Walnut Creek). She did a neuropsych last year for my kid who was 8 at the time. I found her, and the whole org, very ND-affirming and non-pathologizing. She wrote a thoughtful, lengthy report and was super responsive and supportive and sensitive through follow-up conversations and through the process. She knew how to engage kiddo right away and put him at ease, and was nuanced in sussing out his autism among other traits, when in it wasn't clear right away (and was denied in the past).

    In the long list of recommendations, it is true that social classes were listed, and those can I guess be quite behavioral depending where you go, but we weren't interested and didn't pursue them. 

    Summit Center has a particular expertise in serving and supporting 2e folks, if that's useful to you. (It's also very $$, but in our case it was very worth it.)

    If you're just looking for diagnosis, not therapy, try Kim Thompson at www.eastbayadhd. My child who saw her does not have autism, but Kim had a warm and inclusive personality and office. I know she works will all types of neurodiversity, not just autism (she also works with ADHD and Learning Disorders).

  • Any recs for where to get an autism diagnosis?

    Looking for places to get a formal evaluation. Have heard really long wait times at a lot of places, including regional center. Not super cost sensitive, just want to get it done ASAP. 

    Thank you in advance.

    Dr. Cynthia Peterson in Berkeley. Diagnosed our daughter a few years ago. Expensive but completely worthwhile. We're all so much better off knowing what was going on. She is thriving now. 

    Ask your pediatrician for a referral to a Developmental Pediatrician.  You can also reach out to either STAR Autism center at UCSF or Stanford Children's developmental and behavioral center. 

    we just talked to someone at Summit Center. It's expensive but she said her next availability is in mid June for a test. So I'd contact them and see who has the earliest available date there.

    We are in the process of going through an evaluation now for our son. It's slow going. The regional center and school districts are what have been recommended to us, but it takes months to get a formal evaluation (we still don't have ours officially yet).

    The other route you can go is to talk to a pediatrician who can refer to an outpatient center for Occupational Therapy. The child specialists won't be able to make a formal diagnosis because they're not child psychologists, but they can help you develop strategies that you can use with your kid to help with behaviors that are triggering the evaluation need.

    I highly recommend Jigsaw DX (https://www.jigsaw-dx.com/). We were able to get an evaluation with them within days of reaching out, confirming that our two year old does in fact have autism. The evaluation was done over zoom, which is why they were able to do it so quickly - but we later got an in-person eval done and Jigsaw's recommendations were "spot on," according to multiple specialists we've worked with. Getting the dx so quickly allowed us to access services ASAP. The idea that we could have lost out on literally months of early intervention services, during which we've seen our son blossom and grow, just because we had to wait for a DX - would have been really tough. Very glad we went with Jigsaw.

    Even places with long waitlists get cancellations. I highly recommend you schedule something with multiple places: your healthcare provider is a great place to start (ask your pediatrician to refer you), but also try the Regional Center (their waitlist may not be as long as you think), and also private neuropsychologists or developmental pediatricians. We’ve worked with Lisa Greenberg (Oakland) and Ori Elis (Oakland) and they are both amazing. We also got excellent assessments from Kaiser and from Stanford. It also makes sense to start services even without a formal diagnosis if you strongly suspect autism. You are the parent, so you know best. The earlier you can start OT, speech therapy and/or a behavioral therapy like RDI, the better. Best of luck!

    Please, please, do NOT depend on your school district to give you a diagnosis!!  Get your diagnosis from outside professionals, paid for by your medical insurance, or through the Regional Center.  Then bring that report to the school district when you need to get an IEP to get services for your child.  

    School districts have "missed" many students on the spectrum.  Special Ed departments often see themselves as the gatekeepers to spending district money to provide services for students with disabilities.  This could be in opposition to what your child needs to thrive at school.

    My 8 year old son was diagnosed at the MIND Institute at UC Davis in Sacramento. It was a very positive experience after we had visited other doctors who were unable to make a diagnosis. The MIND also offers other services like support groups for parents and social skills groups for kids. I highly recommend them.

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

  • Hello families - We are looking for a center or neuropsych to conduct an autism assessment with our kiddo.  We are hoping to find one with availability that also takes insurance.  UCSF was recommended to us but they are currently full incl their waitlist.  Most of the recommendations we've found are for private-pay only.  Thanks very much for your suggestions! 

    Unfortunately our experience was that centers or providers taking UHC insurance in network were next to impossible to see. Re UCSF We were on waiting lists for 9 months to see a behavioral pediatrician then were told we had to get on another wait list for a psychiatrist. We have been on our journey for about 2 years . Depending on the age of your child you may want to do the cash pay out of network option. I wished we had done sooner as with autism early intervention is key and we have lost years between the negotiations between my spouse and I as to potential autism then the impossible in network provider search. We gave in after 1 year of in network search - Cash pay provider we used was Dr. Gerard Chambers(just Google his name)  - $4500 to 5000 cash for the assessment. It is unclear if uhc will pay for any of this but I was happy we finally completed and now know whether or not our child has autism. Also note that even with the cash pay providers we heard there are now waiting lists given pent up demand post pandemic.

    We ended up paying for a private neuropsych assessment because it was important to get the assessment within a certain timeframe. At that point the wait list at UCSF was a year and because of covid we couldn't do it through the school district. You could look into whether the school district can do it and how long it will take. I did find someone who would do it covered by insurance (we have Anthem) at Spectrum in Berkeley but decide that person wasn't a good fit for our child. I would also reach out to the regional center and see if they can either do the assessment or point you in the right direction. I found and still find the process of accessing services for ASD kids to be incredibly opaque in terms of the process and the costs. The public supports are often not publicized by the private sector folks, in my experience, perhaps because my kid was already a teenager when diagnosed. You don't mention the age of your child but even getting the diagnosis so late it has been extremely helpful. Good luck to you. 

    If your kid is under 3, you should also contact the Regional Center East Bay; they do their own quick assessment (wasn't as thorough as the one we got through Kaiser) and will set up needed services for free until 3.  I think they're often overloaded too though.

  • Hello, I'm looking to get an assessment through Kaiser for our 6 yr old son who we suspect may be on the spectrum. He does not go to a public school, so we don't have an IEP, but the school counselor where he goes strongly suggested he be evaluated. We're Kaiser members, and I've not heard great things about getting an assessment through Kaiser, so I'm checking here to see if any other parents have had success in getting your child assessed/finding a child psychologist who knows about ASD? With Kaiser, you have to have your child's pediatrician refer you to psychiatry first, who, I guess must find enough reasonable cause to then refer you on to a neuropsychologist for a true ASD assessment. We have gotten the initial referral to psychiatry, but I'd really rather not go in blind if there is a good doctor to request a visit with. We live in Richmond, but I am happy to travel to Oakland or wherever to see a good, knowledgeable psychiatrist/psychologist. If our son is on the spectrum, we suspect he is pretty high-functioning, which makes finding a truly knowledgeable practitioner so important, as he is very bright and presents well, but definitely has some developmental delays around toileting, as well as sensory and behavioral issues. Many thanks in advance for any advice you may have.

    We went through this nearly 5 years ago, but at that time, neuropsych. evaluations for ASD were only done in San Francisco, with a small team of psychologists and a speech therapist.  Not a big deal to request this with your East Bay-based pediatrician.  At the time, the wait was about 6 months.  We were first referred to child psychiatry who did a phone assessment and then we were put in the queue for the in-person assessment (about 3 hours long) in SF.

    Good luck!

    P.S. If you want to get a far-better understanding of your child with a more thorough assessment, I recommend you also see a private neuropsychologist such as Ori Elis, Lisa Greenberg or Carina Grandison.  It will cost big bucks but be soooo worth it!

    We liked Jose Lopez and Alexander Klein at Kaiser Oakland. We ended up going to the ASD Center in SF for the eval, which was thorough.

      I've seen excellent, thorough evaluation reports from practitioners at Kaiser Autism Clinic in San Francisco.  Also, for future reference,  students who do not attend public school, are still entitled to many services provided under special education law, such as a free evaluation through your local school to address concerns. There are many caring, informed, talented school psychologists who do excellent, thorough evaluations in the schools.

Archived Q&A and Reviews


How to get my son assessed for Asperger's Syndrome?

Nov 2011

Hi, I believe my son has Asperger's Syndrome, but he has never been diagnosed. Does anyone know what kind of doctor does testing for Asperger's Syndrome? Thank You anon


If you suspect your son has Asperger's, I recommend a comprehensive assessment by a neuropsychologist. Christine Duis, PhD at 925-256-4400 and Caroline Johnson, PhD at 510-843-2005 are both neuropsychologist and highly respected in the field. Nancy C.


Aspergers Testing for 8 year old on Medi-Cal

Feb 2010

Hi, I'm looking for someone who does testing for Aspergers Syndrome (for my 8yr. old son) who accepts medi-cal, or has a low fee. Thank You. anon


Request testing through your son's school district. They will identify if he has Asperger's based on an educational psychologist's testing, and provide him the support he needs. Asking your pediatrician for a referral could work in the medical setting. Laura


We ended up going through the RCEB (Regional Center of the East Bay). Service and diagnosis was free, but the wait was significant, so get onto their radar ASAP. Their office is in Oakland off of 66th/Zhone. Good luck! Stephanie


Contact the Regional Center of the East Bay. I believe they have free testing. Anon


School wants us to have 5-y-o assessed for autism

Nov 2008

My 5 year old child who just entered Kindergarten is getting into a lot of trouble at school. He is being evaluated by a school psychologist who is telling us that he could be suffering from one of the autism spectrum disorders and advised us to get a medical diagnosis. I am devastated after hearing this.

We have seen several ''specialists'' since he turned three because we realized that he had some issues and we got several different opinions ranging from ADHD to Sensory Processing Disorder. I dread going to another doctor now but I want to do whats best for my child. If I get recommendations for doctors in the bay area who specialize in recognizing or ruling out Autism Spectrum Disorders, I would be so grateful. I have been researching this online and my child doesn't seem to fit into any of the five categories!

I would greatly appreciate responses from parents who have gone through similar experiences. Thank you. Sad and frustrated mom


If you want to find out if your son falls within the Autism Spectrum Disorder, I'd recommend going to see Dr. Bryna Siegel at the Autism Clinic in the UCSF Psychiatry Department. She's an expert in this field and will tell you if your son fits this diagnosis. I took my son to see her 14 years ago and even though he didn't fit it perfectly, she decided that he had Asperger's Syndrome. A diagnosis is heartbreaking news, but there is a lot of help out there. My son is now 18 and getting help to attend community college. Here's the website for the clinic: http://psych.ucsf.edu/lpphc.aspx?id=438 Nancy


our pediatrician referred us to the Regional Center of the East Bay; our experience with them thus far has been really great. They sent out an initial specialist, who is now referring us to a medical team (psychologist and pediatrician) that specializes in the autism spectrum. if your child is diagnosed, he/she will be eligible for free services. look them up on the web. anon


I know how difficult this is for you, but it's good that you're trying to get an accurate diagnosis so your child can get appropriate interventions. Since there is now a much greater awareness of ADS, there is also a tendency to over-diagnose. Be aware that it is difficult to accurately diagnose a child with an ASD in an office or clinic. Who ever evaluates your child should do an in-depth interview with you about your child's early development, focusing on three areas (social, language, and behavior). Many children with ASDs are first misdiagnosed with ADHD, and many have sensory integration disorder. However, with early appropriate intervention, they can make LOTS of progress. There is a huge range of symptoms, and no two kids look alike. Many are very high functioning and need varying amounts of support.

I have a child with an ASD, and I'm a professional in the field. I've been impressed with evaluations done by psychologists and psychiatrists at Children's Hospital, but I've found psychologists at Kaiser Oakland and Santa Theresa a little too eager to diagnose after an office visit and not enough investigation into kids' behavior in their natural environments. However, private practitioner Mansoor Zuberi, MD, in Walnut Creek has a lot of experience with kids on the spectrum and knows how to evaluate them.

Are you working with an occupational therapist for the sensory issues? Some of them can give feedback on ASDs. I've heard good things about Susan Campodanico at Alta Bates. Speech and Language Pathologists can also help identify ASDs.

You might ask for a second opinion within your school district. An IEP team can determine special education eligibility without a doctor's diagnosis if the school psychologist and speech/language pathologists are experienced in identifying ASDs.

You're not alone. Good luck! Been There


My son had similar issues. We currently see Dr. Brad Burman and are very happy with him. I highly recommend him. He is far and away the most competent of any of the professionals/physicians we have seen. Take heart: more information is better and there are abundant resources for these kids. Good luck Anon


Hi. Please contact Oakland Children's Hospital. They have an autism screening process which should be able to answer your question as to where your son is quickly. Good luck. me too


I wish I could recommend a doctor for you- our son goes to public school so he was diagnosed by a psychologist through the school district. I just wanted to let you know that going through more than one diagnosis is very common.

Our son has PDD-NOS, an autism spectrum disorder. His symptoms mainly consist of language delays. Here is his ''diagnostic history.'' Twice we were told he had no language delays. Then we were told he had Sensory Integration Disorder, but fortunately not autism. Then we were told that he had sensory issues, an autism spectrum disorder and significant language delays. Each professional had a different opinion. We took him to an autism language clinic where we were told that he was not autistic, had no language delay, but that we should take him to the pediatrician for medical advice because he was ''non compliant'' during the assessment.

If there is anything I have learned it is that it is important to ask exactly what assessment tools are being used. I felt that the more informal the assessment was the more off the mark it tended to be. The psychologist at OUSD used the ADOS- the autism diagnostic observation scale. The key word is ''observation''. I still think it is somewhat subjective. I'm not sure my son is on the autism spectrum but at least he is getting plenty of language therapy.

Have you looked up the DSM entry for Autism? You can find it on the internet. If you haven't already seen it you might find it helpful. Autism really is a broad spectrum. I would also recommend reading ''The Misdiagnosed Child,'' not as fodder for arguing with psychologists, which I have found futile, but to learn about the various disorders, how they overlap, and how one can be mistaken for another.

It sounds like you have financial resources, which is wonderful. You might want to get a neuropsych eveluation. Don't give up looking for answers. Good Luck!


In your post this sentence screamed out to me ''I have been researching this online and my child doesn't seem to fit into any of the five categories! I encourage you to trust what you know deep down and here is why.

My son started Kindergarten this year at Harding Elementary and was in a very similar situation to what you are describing. He is highly sensitive and was easily frightened by the teachers and was acting out. The school teachers and the Principal handled it extremely poorly, telling me there was something wrong with him, that he was not ready for kindergarten and that he needed to be medicated. I did the trip to the Doctor and set up Psychologist evaluations and started to believe what I was being told. However deep down in my gut I knew that he did not act like this with us at home and trusted my instincts that there was nothing wrong with my child.

The first thing I did was move my son to another public school in the school district that was on a faster pace in learning and had a calmer environment. I am happy to say that he is excelling and not exhibiting any of the behavior problems that were happening in the other school. NEVER has he acted out at this new school. Turns out he was bored at Harding and scared of his teacher and the unsafe environment they had set up for the Kindergartners. His acting out was his message to us that it was not the right fit for him. I cannot tell you how relieved we are that we chose to try another school before we were convinced by the teachers that he had a behavior disorder and I really encourage you to look at other schools for your child. If he still has the same problems at a new school then maybe you need to go down the path of looking at diagnoses but please remember that some schools seem to think it easier to label & medicate children (especially boys) than to teach using a variety of methods that encourage every child to learn.

The whole experience was one of the most stressful times in my life and it was truly the public school nightmare that I feared. I completely understand the turmoil you must be going through. If you would like to contact me off the forum I'd be happy to talk with you more - my email address is included. Carolyn


Hi there. I feel your pain. We were told that our daughter might be slightly autistic. We went and saw Anita Barrows who specializes in this. (Our doctor recommended her.) Within 10 minutes Anita told us that our daughter is not on the autism spectrum and that whatever is going on with her is workable. That was four years ago. She also told us that she has seen lots of kids like our daughter and many of them ''out grow'' their differences by the time they are ten. Our daughter is now eight and it seems like Anita's predictions are coming true. Our daughter has received help from OTs etc and is doing very well. I would definitely make an appointment with Anita. She is a wonderful person to work with. Good luck. I have been there


Oh my gosh! I can totally relate to where you are so I just had to respond to your posting. Last December we were told that my son could not continue at his private kindergarten without a shadow aide. His behavior included not relating well to other kids, hurting other kids, yelling at the top of his lung for 20 minutes, and running outside and hiding in bushes when he knew he had done something wrong. He had to sit in a chair outside the group at circle time because he said the other kids were too close. They had a teacher with him at all times to make sure he didn't hurt other kids. They had tried all kinds of things included the favorite sticker chart and nothing was able to change his behavior at school. But, like your son, he didn't really fully fit any of the disorders.

Knowing that there was no way we could afford a $50/hr aide to attend school with him I went into SuperMom mode. We consulted a child psychiatrist who observed him in the school setting. He initially suspected Aspergers but ruled that out in the private session, then tested him ADHD and that didn't really fit either. There was a lot of aggression but when he was in the right setting he could totally function fine and could fully concentrate when he wanted to. We also had him evaluated by an OT for SPD and there was no clear diagnosis there either. I tried to get an appt with Dr. Brad Berman, a recommended developmental pediatrician. but the first available was 9 month out so that wasn't an option.

I read every single book I could find on ADHD/ADD, Austism, Aspergers, allergies, and SPD. One that really blew me away was Healing the New Childhood Epidemics by Dr. Kenneth Bock...it kind of follows along the lines of Jenny McCarthy's experience with her son.

But- again - it seemed my son wasn't autistic or ADD but something was definitely wrong so I took a little bit of everything from all the books and threw it all at my son to see what might make a difference. I did lots of probiotics to work on his gut, started daily fish oil capsules (Dr. Sears kind), and was diligent about multivitamins every day. We started giving him a high protein yogurt smoothie with fruit every morning for breakfast - that was from the ADHD books. I was ready to embark on the gluten and dairy free diet as a cure but it was SO intimidating. A good friend recommended removing everything artificial from his diet - she said it had really helped with her son and his SPD. I decided to first to start with the removal of the artificial stuff would make a difference - that was much easier to handle than gluten/dairy free. We read labels for everything we gave him and made sure it was free of artificial color (including annatto); artificial flavors, artificial preservatives and artificial sweeteners. It is a lot easier than it sounds -just shop at Whole Foods and Trader Joes. I was meaning to have him tested for wheat and dairy allergies but never got around to it - would have been my next step.

Well, we enrolled him at the public school mid-year, fully expecting to be utilizing their assessment and treatment services for special needs kids. He had an amazing teacher and a wonderful school and who would have guessed - absolutely no issues. Well, okay, I think there were a couple minor issues in the first month but that was all. Now, almost a year later we have a child in first grade who completely normal and is doing fantastic - we are getting notes from the teacher saying what a joy he is to have in class. When I get those notes I think back to where we were last December and how far we have come. I even cancelled my appt with Dr. Berman because it would have been pointless. My son now says he is allergic to artificial stuff and makes sure I remember his vitamins in the morning. He will still have something questionable once in a while at a party or such and we often see a direct result in his behavior, but it is a temporary spike that we can deal with. I don't know if any one thing or the combination of all the things we did that made a difference but we are sticking with it and are thankful for every day.

Please email me if you would like to talk more about our experience - I couldn't fit everything in the space of this newsletter - even in 3 parts! eva


I know that hearing the ''A'' word applied to your child is frightening. Please know that the autism spectrum is truly (almost unhelpfully) vast and is often applied to children that have any number of challenges that impact social communication and interaction.

My son was identified as being on the autism spectrum at 3 years old. We qualified for services from our school district (OUSD) and through their language-enriched preschool program, he has made extraordinary progress. He is a smart, funny, social, quirky kid and I would not change anything about him.

In my experience, seeing someone who specializes in ASD is your best bet. Pediatricians tend to dismiss concerns unless they see things like no eye contact or no speech: the more profound markers of autism. Our son is affectionate, verbal and outgoing - very unlike the portrait of autism you're used to hearing about - and our doctor assumed for that reason that he was fine.

Also know that you are not alone. There are a lot of families who have gone through the same thing and are happy to provide support and share experiences. Remember, your son is still the same great kid he was before anyone said the word autism. Please feel free to contact me if you'd like to connect directly. Christa


I would recommend a Developmental Pediatrician. Unfortunately, seeing one could take some time. They usually have long wait lists. I know of Dr. Deborah Sedberry whose waiting time may not be as long, a few months. Also, Dr. Brad Berman is an excellent Developmental Ped, but can take up to one year for new patients to get in. Both Doctors are in Walnut Creek. Cheryl


Hi Sad and Frustrated - I'm looking forward to the responses to your message. I, too, have a (now) 6 yr old who entered Kindegarten and starting receiving diagnoses that ran the gamut. My little guy doesn't fit in any one category either and it is SO frustrating trying to get him help when I don't know what he needs or where to turn. He also has some sort of sensory disorder and has been labeled autistic to aspergers to ADHD.

I wish I had someone to refer you to but I haven't found anyone yet. And all the specialists I've seen all have different opinions. I just wanted to say you're not alone and it is scary, frustrating and sad. I wish you the best Navigating the IEP


Since autism is genetic and results in specific brain changes that can be seen on an MRI, has your child already had an MRI to confirm the diagnosis of autism? Is there another case of autism anywhere in your family? Is your child's father older than average?

I hope you can rule out autism. My friend who is an older teacher thinks that many boys are being diagnoses with borderline disorders when all they really need is more exercise and more intense exercise. Remember when boys used to ride their bikes and climb trees all day? Hopeful


The Regional Center of the East Bay, or whatever area you are in, does free evaluations for ASD (Autism Spectrum Disorders). Their clinicians are generally considered experts in the field. You can go to regional centers on google and find the one for your area. It is better to get a definitive answer than to wonder. Even if your child does not have an ASD, the regional center psychologist can give you recommendations. There are several physician's who also diagnosis ASD but I understand their waiting lists are 8 - 10 months and regional center has guidelines that allow only 120 days. Please call them as soon as possible and keep calling if you do not receive a call back from them. Ask for intake. Someone in the field


I am a speech-Language Pathologist, and I work with children who have language difficulties. I'm not experienced with autism specturm disorder or I could recommend my own therapy service, but I can recommend a couple of clinics that have a very good reputation for ''getting to the bottom'' of making a diagnosis, whether that is on the spectrum or not.

UCSF has a clinic that is designed especially to diagnose autism spectrum disorders. They have a multi-disciplinary team to assess, including an MD, psychologist, speech therapist, physical therapist, etc. I think it's important to get a correct diagnosis so you can provide your son with the help that he may need, early! Don't wait or give up.

Another place to look into is the Bright Minds Institute. Dr. Fernando Miranda is a neurologist that I work with in a hospital setting with adults. He is the founder of the institute and has been featured on Good Morning America talking about autism and how we are diagnosing children with all types of disorders that involve how the brain works, but we are not regularly doing any imaging of the brain to add to the anectodal evidence and behavioral observation. They have a Web site you can find their information and number there. They also have a multi- disciplinary team to do the assessment.

Best of luck! And do not get frustrated, you are doing the right thing by trying to find answers so you can help your son, and you will find them! Kirsten


there is a helpful yahoo email group at autisminterventionbayarea [at] yahoogroups.com christine


You got lots of good advice and referrals; I hope they help you get what you need for your son. I just have to share that our experience with Brad Berman, developmental pediatrician, was not helpful at all. We spent a lot of money for an evaluation but got no more information than we came in with. This was several years ago, but he missed our son's Asperger's diagnosis. So unless, he's gotten better at identifying the milder forms of autism, I'd recommend finding a specialist with more experience in the autism field. anon


our son had what seemed like an asperger's diagnosis last year. the first expert claimed he had it, before meeting him practically, the next few claimed he didn't and once we read more that made sense to us too. my understanding is that autistic kids do not have a sense of themselves as being like other people--so teaching them behavior by using empathy does not work, it is not a way to help them understand how to interact socially. it is a common route to teaching kids these things, and totally dead ends with autistic kids. beyond this though are a wide range of kids who are developing socially at different speeds, who are not autistic. there are signs on the buses also saying a kid is diagnosed with autism every 20 minutes. it appears to me that there is an epidemic of autism diagnoses going on--this is catching kids who need special help but also kids who are just not ''average'' socially. it appears to me that lots of kids are on medication, too, so that ''normal'' is harder to be these days. we took the approach--what if he had aspergers, and looked into programs, talked to lots of experts. having a kid learn social skills is a good thing with or without autism diagnosed. we found there were things that we could teach him to help him better understand how to interact. in particular there is a book social skills for special kids and also a bunch of jed baker books (picture books). these were useful and fun, even though the label turned out to be wrong. but the drastic measures that were being suggested to us by the well meaning doctor were unnecessary and would have been devastating to us as a family, stretching us beyond what we could handle. and all the people saying we were being bad parents by not dropping everything and taking him out of school for these programs etc...they meant well but they were wrong. it was very hard. if your son is autistic, he has lots of company. if he was diagnosed as such but isn't, probably he is just maturing slowly socially, so there are some (maybe similar) tricks you can learn to help him handle social situations and to know he *can* handle them. hang in there, either way, there is no reason to think his life won't be great! anon


I suspect my 11yo daughter may have Asperger's

April 2007

I suspect that my 11 year old daughter might possibly have a mild form of aspergers syndrome. Does anybody know of a professional that might advise me as to testing or further help? I also understand CAL offers a socialization camp and would appreciate any feedback on that. Many thanks!! confused


You can see a private Developmental Pediatrician, I like Erica Buhrmann in Albany. But if your daughter is in a public school, you can have her evaluated by the district; contact the Special Education department or the school psychologist. You can also try the Regional Center (rceb.org) but I don't know the details of their evaluations for kids that are older than 3. You can also read the many, many websites that are out there. There's a good test at http://childbrain.com/pddassess.html also at https://www.autismeval.com/ari-atec/ they're not meant to be diagnostic tools, but they can help provide you with more information. Good luck! Jill


I highly recommend Dorine Slocum, of Vida Behavioral Solutions in Oakland. She's the first non-relative to really ''get'' who my son is and what he's about. Aspergers/autism/spectrum disorders run in my family - my son has seen his share of therapists, and he's only 9! Consequently, he was very resistant to the idea of meeting her; after their first hour together, he speaks as enthusiastically about her as he does about his favorite family members. Dorine is putting together groups of kids, and she also works with kids one-on-one. Her number is 510-835-1272, and she's online at www.vidabehavioralsolutions.com if that's easier for you. She really is great! Kat


If you suspect your daughter has Asperger's please start the assessment process now. You can have your pediatrician refer you to a developmental/behavioral pediatrician, you can have her assessed by your local school district and/or you can have her assessed by the Regional Center of the East Bay (383-1200). There is a lot of support and resources out there and many families with children with Aspergers who would probably love to share their resources with you. You are headed in the right direction because you are asking the right questions and getting more information. I believe a psychologist or developmental pediatrician can make the diagnosis. good luck. Anonymous


Dear Parent, my 8yr old son was diagnoses with Asperger Syndrome 4yrs ago. If your child is a public school you can request an assesment from the school psychologist. You could also have an evaluation by a developmental ped or neuropsychologist - these will be expensive and have a long wait but are very comprehensive. You might try speaking with your regular ped, if you have not already done so. Some are helpful on these matters and others are not. The developmental ped we see is Dr Brad Berman 925-279-3480 and the pediactric neuropsych we see is Dr Caroline Johnson 843-2005. I believe the camp you are interested in is run by Dr Jennifer Selke - I don't know much about it. L


Kaiser M.D. to diagnose/treat Asperger's syndrome

October 2006

Our family has recently changed our medical coverage to Kaiser, Oakland, and we are looking for someone there--a psychiatrist, developmental pediatrician, or other, to evaluate our 10 year old son for Asperger's syndrome, and hopefully, to begin a treatment plan. He has many of the classic symptoms and we're hoping an evaluation will start him on the help he needs. anon


My son was diagnosed by Dr. Russell Rieff at SF Kaiser, but that was 11 years ago and their procedure may be different now. Also, unless things have changed, Kaiser will diagnose but not provide a treatment plan. If you plan to receive special education services through your school district, they may require an evaluation by their own staff. anon


You might try one of the neurologists such as Dr. Jean Hayward or developmental pediatrician Dr. Mangravite. Both out of Oakland. However, I would suggest self- referring to the Regional Center of the East Bay. 383-1200 and ask to have your child assessed. Regional Center provides services for the Developmentally delayed population. They can assess him and it is no cost to you. However, the assessment period does take awhile. Children's Hospital can also diagnose. Try Dr. Watchel or any of the other developmental pediatricians. Good luck. (PS: My preference would be to go to a private developmental pediatrician or Regional Center). Go to the Regional Center Website - rceb.org for more information about their services anonymous


I would recommend checking out Autism Treatment Center of America and the Son-Rise program, regardless of what pediatrician you choose. ABA is the therapy of choice lately, but its effects (in my opinion) aren't often maintained for very long, and the program can be abrasive. Son-Rise, on the other hand, is completely catered to your child's needs, and incorporates the parents as the child's most important resources. Best of luck. Website:http://www.autismtreatmentcenter.org/ - Seen Son-Rise work!