Toddler With Autism- Therapy Opinions?

My son was recently diagnosed with autism. CHAI was immediately offered as a therapy option by RCEB and after interviewing with them and other places we decided to go with them. Has anyone had any experience with them? Also I am looking for recommendations for support groups, playgroups( I live in Oakland), and Dr's within different specialties( a developmental optometrist to do a visual evaluation) that you have had positive experiences with. It seems like there are a lot of people out there that are going through this( 1 in 161 children, 1 in 41 males) but despite us being pretty social we don't know anyone personally that's going through this. I think it would be both helpful for us and the other people involved so that we can share information and support. I recently saw a womans post about Aspergers and the amount and sincere compassinate response she got really made me proud to be a part of this network. The BPN was on vacation when we got our diagnosis, and after spending that time advocating for our son I have looked forward to reaching out to others in our shoes. Thanks in advance and look forward to hearing from you! lily

First off, when your child turns 3 you will be transitioned from RCEB to Oakland Unified. That's good news in many ways - Oakland has some great programs for kids on the spectrum. The main parent support group for Oakland parents of students with special needs is the Community Advisory Committee, or CAC for short. We meet usually on the 1st Monday of the month. Contact CAC to be put on its email list at cacoakland@comcast.net

Also, there is a local special needs maillist you can join. It's a Yahoo group based listserv called Special Needs Network. Search for it on Yahoo and join right up.

The schools that are not inclusion schools - the ones that are specialized schools for kids with various needs not served in a mainstream environment - all have parent groups too. So depending on your child's school placement, you may have a built-in support network.

I hope this helps, and I look forward to meeting up with you in one of the other mail forums available! - Nancy

Autistic - sort of? 6-year-old

My 6 year-old son has language delays & ADHD....the school district has done some recent assessments & they say he is right on the border for autism. I have always insisted that he is not autistic because he relates well to his family & can read expressions very well.

But, I have a question. Can someone be autistic & be able to read people's expressions quite well but still not understand other signs of social interactions? I was watching my son in the playground the other day & he just didn't relate like the other kids. He talks too close, doesn't want anyone else to get too close, gets mad when someone else wants to do the same thing he is doing (other kids usually like it when another kid joins them).

We see a behavioral pediatrician & he says my son is not autistic...I guess I'm trying to figure out if there is ''social'' type training for autistic kids that would benefit him. Thanks for any answers!

In answer to your question, YES. There are plenty of programs like the one you mention. I do not know what they are in your area (I'm in the south bay) but one of the programs down here is called Friendsmart in Mountain View. The classes are called ''social skills'' classes.

Here are some links from the Bay School's website about autism (The Bay school is a school for autistic children in Santa Cruz): http://www.thebayschool.org/links/links.html

If your child is ''borderline'' some of the resources will apply.

Here is a page from my website about autism resources. Check out the Handle institute - they come highly recommended. http://www.anachronisticmom.com/Medical-KK/Autism-K15.html

I would recomment this yahoogroup ''parents of special needs kids.'' It's located on the peninsula, but has excellent resources - for all kids with any special need.

peninsulaparentssnk-subscribe[at]yahoogroups.com

And finally, here are some links from berkeley parents network:

strawberry canyon social skills camp: http://parents.berkeley.edu/recommend/summer/strawberry.html#social

http://parents.berkeley.edu/recommend/therapy/socialskills.html

BTW, I once read about a wonderful program -- a theatre program - used for asperger's syndrome children, where they were taught how to respond ''emotionally'' in situations. It worked well. Turns out that some of our children process social interaction in a more cerebral fashion -- they don't just pick things up by osmosis. And no, that doesn't make them diagnosable. Protect him, get him some classes and help him practice and ... Good luck! another mom

On the other hand, one can be typically developing and also have trouble with social interaction; to not relate like the other kids. The question is, does your son need the ''label'' of autism in order to do well and thrive?

There are lots of groups that work on social interaction, with autistic and non autistic kids. IMO, any kid would benefit from a social skills group, so regardless of your diagnosis, it wouldn't hurt to just find one and sign up. I'm sure you'll get responses from folks who run groups, I'd encourage you to contact them!

Feel free to contact me directly, as well. Jill

Another site which focuses on Aspergers and has resources listed for teaching social skills is http://www.udel.edu/bkirby/asperger/

There are other causes for difficulties with social interaction. You mentioned that your child has language delay and ADHD--have they ruled out Fragile X Syndrome? Also, has his hearing been thoroughly checked? He may have trouble understanding what other kids are saying if his hearing is muffled at all (infections, fluid build up) So he might avoid playing with other kids or learn ''bad habits'' in terms of personal space for speaking. Best of luck. teacher

He is currently enrolled in a weekly class on social skills and social language use through Communication Works, in Berkeley. I think it has been very helpful for him - I would definitely recommend you check it out. You can get more information on their website at www.cwtherapy.com. Good luck! Emma

Helping my sister with her autistic 5-year-old

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

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

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

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

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)

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

Dr. Dave Traver M.D., FAAP
1261 E. Hillsdale Blvd.
Foster City CA 94404
650-341-5300 phone

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

Autism Early Intervention Centers for 2-y-o

My 2 year old son was disagnosed with mild autism / PDD. He was referred to CHAI (Oakland CHildren Hospital Autism Intervention), but we're not sure that's the best place for him. Anyone have had experience with CHAI or BIA (used to be in Emeryville, now in Oakland) or any other early intervention centers in East Bay? Thank you!!

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

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

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

Exhausted by angry autistic 10 year-old son

My 10 year-old son who is special needs, obsessive compulsive, and autistic seems to go out of his way to make me angry at him. I had a baby over the summer and have an 8 year old son and because of my 10 year-old's behaviorial issues, I have to homeschool him. He is an extremely challenging child and has been since birth. He still has tantrums and will burst into a rage in public if he doesn't get his way. He's always mad at me for something and will tell me he hates me. When he gets his extreme fits for a toy or an outing, I try my best to be patient and walk away from him if I find my head wanting to explode into a headache. Lately, I have felt extremely tired and frustrated that upon my boiling point I start yelling him to stop, he'll start laughing and laughing, whicn only antagonizes the situation. I know I can't spank him because I'm afraid of my own strength and worry I may get carried away. My parents aren't available to give me a break as they're too dysfunctional. My in- laws aren't helpful as they are always judging me and my husband on our son's behavior, which is not a reflection of his parents. I feel utterly frustated, exhausted, and exasperated as he takes away so much of my energy, and guilty I can't give as much to my younger two sons. Sometimes I just wish I could walk away and never come back but he worries me so much as he has a hard time making friends and seems to be jealous of my middle son but thankfully not of the infant. I feel pulled in all directions. My husband is hands-on and will take him to the park, help with school work, take him to activities, just take him for a walk after dinner, and spend quality one on one time with him and the other boys, so he does what he can after his full time job, but I don't know if I'm just tired having just had a baby. Please no negative posts. Negativity doesn't help me. I have heard more than enough from family and close friends who simply don't know what it is to live with a child like this. Thank you. Sad Mom

Now, last but NOT least, you need to focus on self-care. Space and time carved out for yourself, maybe meeting with parents of special needs children in a support group, or just taking time out to meet your own needs. You have taken on a huge job, and will burn out fast without support and care anon

Also, maybe you can see a specialist who can help you set up a behavior plan at home so that you can try and deal with your son's behavior in a systematic manner. I know this is super hard! Sometimes following your instincts about how angy you feel isn't the worst thing to do--different kids need different amounts of imput to get the point. another special needs mom

Insist on an evaluation, and if necessary, pay for a second opinion from an educational psychologist. Are you aware of any private schools or boarding programs that could help your son?

If this is the only way to give him adequate schooling, then the school district must pay for it. (For example, our school district has paid for students to go to the RASKOB institute in Oakland). It takes a lot of persistence, but it may be worth the effort. Second, see if you can find some books on raising an autistic child that you can share with your in-laws. Talk with them frankly about how difficult it is for you and your other children, and see if you can arrange some type of respite time with them. If they cannot provide help with your oldest son themselves (after all, he sounds very difficult), perhaps they or your family could chip in to provide for a helper who comes in occasionally for your son, or they could take the other two, to give them a break. (My son went through explosive rages for several years at about this age, and I would take his toddler brother, and his sister if she would go, over to the neighbors until he was back under control--embarrasing, maybe, but it wasn't like they didn't hear what was going on, and they were very supportive, not judgmental). I found having a diagnosis was very helpful with my family and friends, so educate them with books, documentaries, web sites--whatever you have at hand.

There is an organization headquartered in Berkeley--DREDF http://www.dredf.org/, that can provide a lot of info on the rights of parents of kids with disibilities (which is what your son has). I wish you strength, patience, and luck in dealing with this Anonymous

School was complaining about him, other parents... so he entered therapy as well. Therapist asked that my mom and dad also go, but my mom got uncomfortable after a few sessions of seeing that she would need to shoulder some blame and she refused to keep going. At that point, the therapist suggested that under the circumstances, it would be best if as soon ans my brother started pushing my mom's buttons she would call my dad up and then walk away. If he was anywhere but work, he needed to drop everything and come home and deal with it. (I should add in here that my dad was very hands off when I was my brother's age - my mom was working FT and keeping house, going to PTA meetings, being a housewife and working and my dad was for way too long living the life of the 50s dad who worked, came home, cracked open a beer and watched TV until dinner was ready). So they tried that and to this day my mother said it saved her marriage, her sanity, AND her relationship with my youngest brother. For years, they barely dealt with each other beyond pushing buttons a little and then my dad stepping in. And then one day, it seemed like my brother snapped out of it and by then, after years of therapy, my dad finally stepped up in his own ways, and today, with her children 38, 35, and 32, you'd have never guessed how incredibly screwed up our house was (unless you looked really closely ;) )

In any case, I am not sure if ANY of this might help, but I wanted to give you hope. What helped my mom was being somewhat absolved of dealing with my brother. Maybe you need a long-term break of sorts anon

If he has OCD and autism, these are serious issues, and you and he need as much good, professional, caring help as you can get. He deserves to have the support of good special education teachers, counselors, aides and other professionals provided by the public school and (if you can at all swing it) as much private support (therapists, babysitters) as you can afford.

This is not only for your benefit (though I believe, from my own experience, that it would go a long way towards helping you feel a lot less alone and desperate) but for his as well. He truly needs the help of people who know how to deal with his problems, and who can steer him towards confidence and success. He might very well be a lot less angry and tempermental if he had this kind of support; He might also behave better towards you if he had more time away from you. I think that you also could benefit from having time and space away from him, AND from talking to a sympathetic counselor who could help you deal with your (justifiable) frustrations and angers, and who could help you devise a plan for creating a special "village" to help you raise your children, particularly your eldest. Believe me, I know it is not easy, but I implore you to get some really good professional help for your son and for you. Start with an IEP in your school district (call up the office and they will tell you how to get started). Please get a babysitter right away to give yourself some breathing room so that you can start moving towards getting the help you and he need! Please email with questions/for refs jerechter@yahoo.com

Regular time that I take care of myself has been essential, and it's so worth the effort and possible expense. Knowing my own limits, and replenishing myself. It is very hard to have a challenging child, and people with easy kids have no idea how hard it is. But there are things you can do. Antidepressants have also helped me a great deal. You may also want to consider therapy for your son with someone knowledgeable about these issues.I wish you the best anon

Obviously, a child is in control of very little. We dropped out of any social life, never took her out to restaurants, didn't press for new playmates or playdates. I didn't realize just how far it had gone until her ''normal'' little brother was born, and he wasn't like her at all! I reached the breaking point last January with my daughter, after cognitive-behavioral therapy didn't work, and her rituals started to consume hours of MY time as well as hers. We got her on sertraline (brandname Zoloft) and inched up the dosage over the course of several months and ...

although it's not 100%, just imagine losing maybe 70 to 80% of the rages, the tantrums, the anger and frustration! Rather than feeling sad that she's on medication, I just think about the chemical imbalance that causes the erratic behavior and feel grateful that there's a way to give her some relief. I would love to tell you how she feels and how this affects her, but she doesn't talk about her feelings. She is grateful for the medication, and I actually LIKE being with her now that she isn't tormented by needs that she can't fulfill. I know what it feels like to just want to walk away and not look back. I can't share my name with you because I am not willing for other parents on the listserve to know my child's ''secret'' - it's hers to tell or not, and I must respect that. My heart is with you and your family. This is a painful disorder for all of you. Sad mom, too

I would gently suggest you talk with David Demeray of BioGenesis. His family has a wonderful set of ''tools'' which are working very effectively for many people. The great thing is, anyone can use the tools, they're very simple and easy to use. If you speak with David or his mother Linda, I would suggest you ask them about the boy who recovered from very disabling OCD. It may give you hope and a resource, not only for healing for your son, but for your entire family. There is much assistance and guidance for all of us if we open up to it. Thank you for the courage to expose your struggle and ask for help - that is always the first step. I will post another response with David's contact info, (the website is www.BioGenesis.us), however, I don't have it with me right now. In the meantime, please feel free to call me or email me and I can get the info to you that way. Take care of yourself and thank you for your courage in sharing your struggle - you are a very patient and caring mom whose family is fortunate to have you loving them the way you do. Bless you Laura

We began working with Virginia with our son, who also has similar issues, and the change over the past few months has been remarkable. I hope this will also work for you and your son. Been there too

Were you ever involved with the Regional Center or the state program for older kids with disabilities? I'd think they could connect you with other parents facing the same issues that you could at least commiserate and share information and support with; autism has become so prevalent in CA recently that you have lots of company. It sounds like the homeschooling-having your son home 24/7-is a source of great stress. Trying to provide for all of his needs-while also taking care of your other kids-is just too much. Do you ''have'' to homeschool him? He sounds like a prime candidate for services either in a public, private or ''special'' school, paid for by your local school district. I'm also (slightly) aware of an organization called BIA that does home behavior therapy/education with kids with autism. There's also an advocacy organization-and I hope someone will write in with the name-that helps parents advocate with school systems so that the child's rights under ADA are observed and needed services are made available. You'd also be eligible for some respite care, I would imagine-someone trained who could watch your son periodically. I could see how you wouldn't have time and space to investigate these things, but please do what you can, or ask a friend to help-so that you get the kind of support and resources that will make a difference for you and your family for the long-term. Feel free to email me if I can help you track down some resources. jkh

Unfortunately, your son will only get stronger and bigger and you need to think about keeping him safe, which is why an expensive consultation may be worth it in the long run. Good luck anon

Autism home programs

We have done a Lovass type home program for 3 years, I am a divorced mom with three little ones, my son is six with autism, now after the program he is social and verbal, it took a toll on my little girls and my finances to be able to stay home and do a 40 hour progam but I did it because alot of the public schools had inadequate programs. But at this point I am burnt out and at some point will need to find work and wondering how and when most parents stop these programs?at what age do you stop? how to transistion? does anyone know of other states like CA that have a idea of how to work with autistic children in school? I feel quilty for moving on but its very difficult. Nat

4-y-o aggressive and unpredictable, possibly autism

We are struggling with how to deal with our 4.5 year old son's challenging behavior. Some background: He has been evaluated by Childrens' Hospital as well as the Regional Center of the East Bay. One group of evaluators said he did NOT have autism, the other diagnosed him as being on the Autistic Spectrum. They both agreed he had a challenging temperment and significant speech and language delays. He is currently in a special ed preschool through the school district, where he is getting speech therapy and occupational therapy.

I feel great about his preschool program and the help he is getting there. However, it has become clear to us that we really need help in dealing with his aggressive, disruptive, unpredictable and contrary behavior outside of the classroom. I feel like we need to be seeing either a child therapist specializing in spectrum disorders and the behavioral issues that accompany them; or possibly a behaviorist to work with us on a regular basis. I'm just not sure what kind of a professional would best suit our family and our needs.

Are there others out there who have had success in working with someone on their child's challenging behavior issues? Any approaches you've found useful, or professionals who have helped you would be greatly appreciated. sad & frustrated mom

You didn't specify the type of challenging behaviors, so this may not be completely relevant. It helped my son at about the same age when tantrums and aggressive actions were the problem. The first thing that helped was something called ''floor time'' therapy; we saw Jane Rubin, PhD, 510 704 8759 in Berkeley on Milvia for about 3 or 4 months, and the tantrums largely disappeared immediately. It was like magic - they really just STOPPED.

The second thing I would recommend is a behavioral assessment. There are several good organizations out there. BCRC, www.bcrc.com, is one I've worked with through my son's school. Carl Schrader is the head of the organization. They contract with the school district for aides to help in the classroom, but I think they will also come to the house and help assess what's going on. They can then help you with general strategies to help (like creating a ''what are we doing today'' board to help show the day's schedule visually, which can help organize you son's day for him - which often helps calm these guys down.)

Depending on your school district, you may get some help from them with this too. If your son needs behavioral help in the classroom to ''keep it together'' while in school, the district will arrange a behavioral assessment. You can ask them to include a home assessment component. Focus on the fact that if you are not consistently applying the same principles at home, the school program will not work as well. (It's true!) This will help sell them on paying for it.

Speech/language therapy is a huge help. Some of the reason for his behavior is probably reaction to a very mysterious and inconsistent world. If he doesn't understand what is being asked of him, and then people get cross with him for not complying, it's completely understandable that he would get mad. The faster you can help him with both comprehension and expression, the better. Visual aids like a planning board can really help with daily stuff. I probably have a Word doc of the last one we used, so let me know if you want me to dig it up.

Last thing I would suggest is a book or two. I found some of the ideas in The Explosive Child by Ross W Greene helpful. Actually it was mostly helpful to read about other kids who were as bad as or worse than my own... as I had already implemented a lot of the strategies he had talked about. But I only read it last year.

I hope this gives you a couple of places to try. I'd be happy to talk or email offline too. My son's now 9, and while he does still have explosive outbursts, they are far rarer than when he was 4. Also we know the triggers far better now. Nancy

Here's a link to a sample letter: http://www.bridges4kids.org/IEP/FBAPBSsample.html

If the district says no, then send a similar letter to Regional Center, and tell your case worker that you are willing to go to Exceptions and Appeal if necessary.

Both the school district and RCEB have behavioralists. You could definitely ask RCEB to send someone like the Lovaas Institute, which is a RCEB vendor locally.

At some point, it would be helpful to have a diagnosis by a trained, experienced neuropsychologist. If the testing was just 2 hours done in a tiny room, that's not much help. Elsewhere on the website there are some recommendations for neuropsychs. Anon

Chelation as autism treatment

Does anybody have any personal experience with chelation as a treatment for autism? I'd love to hear all about it. Does it work? Is it just quackery? Are there any local pediatricians we can work with who have some expertise in the area? Feel free to contact me directly. Jill

As of the date of the article, I don't think the child's cause of death had been officially determined, but if you're considering chelation therapy, it might be worth following up on this story. Anon

Granted, the man who tends this website does have a point of view -- and he pretty much thinks chelation is quackery, but at least he puts together information from reputable sources, and gives additional leads. Might at least be worth a look. Karen

Worried that 11-mo-old w/dairy intolerance might be autistic

I'm just beginning to read about the autism and dairy intolerance link and feel a little panicked about my 11-month old, who definitely has a dairy intolerance. Does anyone have any ideas as to the percentage of kids who have dairy intolerance, versus those who go on to have the onset of autistic-like symptoms around 1 year and a half? While my son is very social and outgoing, he does exhibit behavioral quirks that worry me (selective listening, lots of babbling but resistant to gestures/signing, doesn't wave hello, goodbye). Am I just being paranoid or do I need to put him on a strict gluten dairy-free diet and (maybe even) have him tested? Advice, please! worried mom

Inclusion in regular day care with Autistic child

Hi, I have a toddler in a home based day care. The day care consists of mainly infants with a couple of toddlers and one elderly adult assistant (along with the main provider).

There are 7 full timers and one part timer (two of her schoolage kids come home halfway through the day). Last week she had a 9 year old autistic child ''drop in'' for two days.

This week he has joined the day care. There has been no open discussion. The child does not speak and loves to go outside (will bolt for a door if he sees the opportunity, pushing out of the way).

I am a compassionate person and all for inclusion, but am concerned about the age difference and mimicking behavior inappropriately. I am also concerned that my provider and the assistant are not adequately trained to manage this situation (especially in the event of an ''episode''). I questioned her and was told that the child ''doesn't hurt anyone.'' That was not what I asked her when I got that answer!

I have a very dear friend that has a masters in special needs and her opinion (based on her specialized training) is that it is completely inappropriate for a 9 yr old with special needs to be around toddlers. Aside from the toddlers mimicking him, the 9 year old will mimick the toddlers. It's one thing when a two year old mimicks another two year old hitting, scratching, pulling, but when a 9 year old mimicks a two year old hitting, scratching, pulling, someone can get very hurt.

I am trying to discuss this with my provider but feel like my attempts to openly communicate are not being honored......

one mother has already abruptly removed her child! I am already looking for alternates....

any advice, would be highly appreciated...... anon

With due respect to your friend who is an expert on special needs children, no two autistic children are alike, just as two typically developing children are alike, so her judgement that an autistic child should never be included with young children is too simplistic. Many professionals in child development and education have little if no training about developmental disablities. Teachers training is about typically developing children, unless the teacher is aquiring a supplemental special education credential. I have had to explain my child's discrete-trial training at school a pediatrician.

Autism is a spectrum disorder. If a child has enough characterstics that indicate the disorder a diagnosis can be made, but all autistic children do not behave identically, since they won't share identical characteristics. For example, autistic child may be very ritualistic, while another may only be slightly so. The stereotypical autistic kid who bangs his head or flaps his arms all day is just that - a stereotype - they're all different.

Aggressive behavior would be a reason that the child might not be a good fit for this daycare. Many people believe autistic children are always aggressive. My son is extremely passive and has never shown aggression toward anyone. As a toddler he just seemed like a passive, shy boy. As far as the possibility of the autistic child immitating two and three year-olds aggression in day care, I wouldn't worry, most austic children don't immitate other children. Their aggression is a symptom of their frustrated attempts at communication.

Bolting is another reason the daycare enviornment may not be appropriate if the provider cannot provide for the safety of the autistic child and her other children. When you ask her about this behavior, ask specific questions, ''What action will you take if ''Billy'' escapes? How will you supervise the other children if you need to go retrieve him?'', ''How often does he escape?'' ''Does he stop when told to?'' She probably answered your question with ''he doesn't hurt anyone'' because that is what she thinks you're concerned about aggression. The provider also probably felt defensive both of herself and of the autistic child, since a parent abruptly pulled their child from her care. It's an answer people often give when people are concerned about wierd, but otherwise harmless common behaviors of autistic people, like hand flapping, ordering toys, making odd noises, ect. A lot of people, even if they don't admit it, just don't want to be around people who behave differently, even when the behavior isn't harmful.

If you're concerned about the provider's training, again ask her specific questions, such as ''How do you communicate with Billy?''. ''Does Billy respond to your commands?''. ''How does he communicate his needs to you?'' While teaching an autistic child requires a lot of apecialized training, providing care for a few hours after school would not. Many non-verbal children are taught to communicate using picture cards, so if he brings her a card with a picture of a toilet on it, she would know, with or without a lot of training, that meant he needed to use the toilet.

I hope you can open up better communication with your daycare provider. I think being specific in your questions will help. With the increase in the numbers of children being diagnosed with autism, we will need more people who are open to caring for them, and we will all need to be tolerant of their differences. anon

How to find after-school care for autistic child

Any advice on how to find a person who is good with special- needs kids to engage my 9-year-old son in various activities after school up to 4 days/week? Could include help with homework, have friends over, supervise minor home chores, go to park, kick a soccer ball, go to library or other short outings, etc. Prefer someone with background or training with kids who have autistic-spectrum disorders. My son is high-functioning (PDD- NOS) and in a regular-ed classroom, but he does need extra help negotiating the world. I have posted to the BPN Childcare Digest but feel it is likely I will need additional sources to find this special care- giver. If you can suggest any ideas on where/how to go about this, please let me know. Thanks. Beth

Possibly autistic 1-year-old niece - how to be supportive?

My sister and brother-in-law have a daughter who just turned a year old. She has been described by a nuerologist as globally developmentally delayed (50%), probably having a communicative disorder or disability, possibly on the autistic spectrum and not probably, but possibly having rhetts. She is very very cheerful and smiley, but is just starting to sit up, does not crawl or walk, does not babble, mimic sounds, track or make eye contact or respond to her name or other sounds. More testing is being done, but they won't have a specific diagnosis for at least a month (that would mostly be if it is something testable like rhetts) or much much longer. There's more, but I wanted to paint just enough of a picture to ask those who have been in a similar situation, or know someone who has, what are good ways to support my sister and brother-in-law? what are things we should definitely not say? what are things that might be helpful to say or do? I've been doing a bunch of reading (as are they) and I know everyone is different, but I thought it might help to hear from people some specific ideas of how to be supportive. Thanks.
seeking to be a supportive sister-in-law

It sounds as though they may be dealing with Rett Syndrome, but if your niece's diagnosis is, ultimately, that she has an autistic spectrum disorder, I would highly recommend reading the book LET ME HEAR YOUR VOICE by Catherine Maurice. While her children's ''recovery'' is extremely rare, she gives an excellent overview of appropriate therapies and the history of the disorder.

I wrote an essay several years ago about things our family had found most helpful, titled ''Being There: What You Can do For Parents When Tragedy Strikes.'' I'm sure it's not a universal solution, but I just wanted to put together some ideas, some things I wish I'd known earlier when I struggled to comfort pals who'd gotten hit with scary and sad situations.

You can access the piece at the following URL, if you think it might be useful, and you don't have to register or anything to read it:

http://www.epinions.com/kifm-review-6F79-1A99C62D-384F1A22-prod1

The most important essay I've read over the years, however, has been Emily Perl Kingsley's ''Welcome To Holland.'' She's an outstanding writer, and (I think) manages to be both profound and comforting in this short piece, without ever venturing into bad Hallmark-card world. The ''official'' version is available here:

http://www.journeyofhearts.org/jofh/kirstimd/holland.htm

Again, I commend you on your approach to all of this, and I hope things turn out well for you and your family.

Cornelia

Where to Get an Assessment for Autism

I am looking for information to help an autistic 4-year-old boy. The mother does not have much community/school support. But she really wants to try her best to help her kid at home and possibly to educate the preschool teachers as well. Her son has language delay and some other characteristics of autism but seems to be high-functioning kind. Any information and advice you have on this topic is much appreciated. Thanks a lot. Lily

My pediatrician thinks that my 3 year 1 month old daughter is mildly autistic and wants us to have a developmental assessment. I have been looking into this and the wait times for this are extremely long when we are feeling so anxious. We are getting on the waiting list at Children's Child Development Center and have also contacted the East Bay Regional Center. Has anyone had experiences good or bad at these two places? Does anyone have any experience with this type of evaluation they are willing to share? What can I expect? What can I expect with this type of diagnosis? Can anyone recommend a really sensitive great child psychologist who could do the assessment privately? If you would be willing to talk to me about your experience with this I would greatly appreciate it. We are pretty terrified at this point. My daughter is very outgoing and interactive with adults and children (although not with her pediatrician!), has some problems with limits and has been having trouble with language and pronunciation. Her speech is indistinct and words she used to pronounce correctly are sometimes now slurred. She used words earlier than her peers but then progress seemed to slow down and now her inteligibility is not good. Strangers often do not understand her. Frankly, I don't view her as autistic but I am worried about the amount of rhyming that she does. She does it interactively with us and also babbles and rhymes talking to herself alot. She sometimes uses a singsong tone that people have commented on. (We are on the wait list for a speech eval. at Herrick.) many thanks

Carolyn Johnson, Ph.D. at Children's Hospital, Oakland's Department of Psychiatry, also wonderful with small children, is an excellent neuropsychologist who works in an interdisciplinary team that has a lot of experience with autism spectrum disorders.

I have worked with both of them and would bring my own child to them without a second thought. I don't know if either do private assessments, but if you couldn't get in through UCSF or CHO, it's worth investigating.

Do not put all your faith in any particular diagnostician's opinion. Put your faith in your daughter and yourself and your husband. But DO proceed quickly. Early interventions are the best, and the sooner you are aware of the possibilities and her individual needs, the better for her and for you.

I, too, had all those fears and questions, all those unknowns, all that terror and waiting for appointments that you are experiencing. But now, I've got some hindsight. I longed for someone to talk to, some other similar children to observe, any one who could tell me what was happening to us all. Please do feel free to contact me. I would be happy to talk to you, for however long, and give you whatever benefit there is of our own references, stories, experiences, etc.

I am a health professional. My ex-husband was a neuropsychologist at a famous clinic to whom every problem looked like an occasion for Ritalin or some other psychoactive drug. For years I fought him tooth and nail about drugging my child (I won, as the kid lived with me, and dad lived in S. CA and hardly really knew his own child). My child, who supposedly would never amount to much, is now a perfectly well adjusted, very smart adult with a well-compensated learning disability I noticed at age 2 that was helped greatly by positive therapy for learning strategies (Dean Lobovits in Berkeley, a great guy) and a good private high school (St Mary's in Berkeley, they were beyond fabulous). NO drugs were given. And I managed to overcome most of the negative messages given to my child about his alleged neurological defects, by his father, to whom he was more of a clinical case/ diagnosis than a loved son. I was reminded of the saying that to the carpenter every tool looks like a hammer. By the way, Ritalin has now become a drug of abuse, outside the medical setting, and perhaps in it as well. (See Peter Breggin MD by doing a search at www.google.com )

I have had recent extended professional contact with children labeled with this ASD diagnosis and frankly I thought that in some cases the parents were a bit too accepting and that the symptoms were a matter of interpretation, or over-interpretation, of simple behavior problems that were not being addressed. In several cases I've seen over the years of very troubled kids (seeming incipient personality disorders) the parents were therapists. I didn't know whether to be surprised or not.

Not knowing either you or your child or the circumstances, I certainly cannot offer you any advice other than extreme caution and to encourage you to get several evaluations and opinions over time from people with different perspectives with whom you feel rapport and trust as a condition of working with them. A pediatrician whom the child doesn't like is a red flag warning to me, especially since he/ she has now pronounced your child "off" or ASD. Pediatricians don't necessarily know all that much about neurological / psych disorders. Your daughter may have a learning disability or several different ones. These can be remediated without drugs, with some work on the part of the parent. I know, I did it, even as a single mom with limited resources.

One of the most important things to know is to encourage the child in the direction of his or her strengths. And to set limits on behavior that is not acceptable in a firm but supportive way (that is not currently in fashion). In short, what you would do for any child you were really deeply committed to. I think being a parent involves tremendous time, effort and dedication, and frankly it seems easier lately for some people to pop a label on the kid, give a drug, call in a nanny and drive off to work. I consciously dropped some of my work and activities for a period of years to focus on helping my kid. Sometimes that's what it takes. It was well worth it. Good luck to you and your child.

Treatment for autistic child

My nephew (18 months) has been diagnosed as autistic and we are researching the best available options in terms of centers that offer behavior modification therapy / Lovaas method / TEACH. Any advice will be much appreciated. We are particularly interested in the services they offer for infants (18 months to 2 years old) and whether they provide at home treatment? What is the approximate cost of these services?

Some other questions include, What sources are there for getting trained / experienced / skilled behavior modification therapists (for children aged 18 months+) for at home treatment? What would be the approximate costs of these services?

Same question as above for speech therapists?

The family is willing to move anywhere within the US to obtain the best possible services for the child. So, if you have centers to recommend in other areas please do let us know about that too.

So: "what to do"?

Do read the book, but please put your critical faculties in high, omnipresent gear. This is terribly difficult, maybe impossible, to do if the subject is so close to the soul and so painfully real as when one is the parent of a child with similar problems. Kaufman is a bright man. He must know this. His very few "caveats" positioned through the text were not enough, not loud enough, not meant to be convincing. I suspect this preaching, or any evangelical behaviour, but when a life is at stake, I am doubley disturbed. We are connected from core to core with our children, and would do anything to help them. Kaufman's cure may have some validity in certain cases. Which cases? To hear the word, "autism" applied to one's own child is a life changing moment we can't possibley comprehend until that moment occurs. It makes one desperate, grief stricken, forever altered. Someone holding out a cure is more than tempting, it is compelling. But without some objectivity and a healthy dose of doubt, it will be impossible to tell whether the cure being offered is a potentially useful therapy, or an instant shot of novocaine.