Could My Child Be Autistic?

9-month-old may have autism

March 2013

Our pediatrician believes our 9-month-old boy may have autism, as do we (actually, I'm pretty convinced he does). He has made no connections since birth, doesn't seem to recognize me as mom, prefers to look at things to people, few expressions, also several months behind in development. (I have older boy so I can see the difference.) I just read The Autism Book by Dr. Bob Sears. Awesome resource. I want to find a doctor who is expert in the biomedical approach from the Berkeley, Oakland, El Cerrito, Albany area. Does anyone know of someone with MAPS or DANS training? Oak Children's Hosp tells me I have a 4-6 month wait to see a developmental pediatrician. Also fearing long waits from Regional Center, which is so far unresponsive. Am thinking of going the private route to attempt to get diagnosis so we can proceed. I understand early intervention is crucial. Any other advice for getting the ball rolling quickly is helpful. What are other's experiences with wait times at Regional Center? Are they using the biomedical approach there? Would love to connect with any parents who've tried the biomedical approach to talk sometime. guidance please

While I think nine months is early for an autism diagnosis, I totally understand your desire to be proactive with early intervention. My autistic son is now 15 years old and I have spent a huge amount of time, energy and money navigating the waters that you are asking about. There's a lot to learn, but I would say that the crucial first step is to get your diagnosis. You need to see Dr. Ann Parker (900 Colusa Ave Suite 202, Berkeley, (510) 528-5580) ASAP! The worlds of behavioral therapy, biomedical approaches, support services and holistic autism treatment are extremely confusing. Dr. Parker has been a kind, supportive and incredibly knowledgable ''voice of sanity'' for our family. She's the best. Best of luck to you. Please feel free to email me with any questions. Whatever your ultimate diagnosis, I know your son will take you and your family on an amazing journey.

If your 9 month old is not responding to faces visually, I recommend a comprehensive vision examination to rule out a vision problem such as a high refractive error (blurry vision) or eye health issue. Eye care providers (optometrists and ophthalmologists) who routinely test infants and young children should be able to rule out vision problems as the cause of your infant's visual inattention. Deborah Orel-Bixler, O.D., Ph.D.

We had a speech evaluation at Herrick (Alta Bates) that cost $700 out of pocket because of our deductible. I wish we had gone straight to the Regional Center, which didn't charge at all for the evaluation. We did have to wait just about exactly 45 days from the time we sent the Regional Center a letter to the time we heard from them, it felt like a black hole of unanswered messages. I think it helped to have our pediatrician also contacting them and sending information. It's a long month-and-a-half when you're worried about your kid. I was quoted over $1,200 for a private evaluation by a local developmental pediatrician, and she didn't take insurance for the evaluation portion. I'm glad we waited to get the eval at Regional Center - they were really wonderful there, I was very happy with the evaluator. My son, it turns out, is at age level in almost everything - from the time red flags were raised (18-months) until we actually got the evaluation (21-months), he caught up. We did qualify for some service but that has been slow to get started (it's been over a month). I think once it gets going it will work fine. If money is no object, then go for the private evaluation and get the ball rolling. Otherwise be prepared to wait a bit to hear from the Regional Center (do get your ped to contact them, though), and try to educate yourself in the meantime through books and online resources. Good luck!

You're correct that early intervention is a great boon for children with autism and autism spectrum conditions. I would urge you to call the special education office of the school district in which you live.

In CA special education, funds for developmental services are administered thru the Special Education Local Plan Area, or SELPA. Oakland, having a big special-ed population, is a ''single district SELPA''. But smaller districts, like Berkeley, El Cerrito, Alameda, combine forces. Figure out which is the responsible office for the district in which you live. School districts call special-ed departments ''Programs for Exceptional Children'' or PEC.

Even tho' your little one is only nine months old, it will be your local SELPA that can connect you to ''Mommy and Me'' programs for pre-K children with autism and other disabilities. Under the Individuals with Disabilities Education Act (IDEA) it is illegal to put kids with disabilities on waiting lists for appropriate placement. This generally applies to school-age kids. But you can bring pressure to bear earlier to get services

Your local school district will also have a Community Advisory Committee for Special Education, which is like a PTA for special ed parents and teachers, and is mandated by state law. it is great to connect with other special ed parents.

Regional Center services do not generally kick in until the responsibility of the school ends, usually at high school graduation or age 22, whichever comes first. But it is important to have your child identified for Regional Center services before they turn 14. Earlier is better. A letter from the Regional Center was what it took to get our son six years of free college tuition, income from SSI, Medi-Cal eligibility, and many other program opportunities. It does take time to get set up with the Regional Center, but you can approach the local SELPA immediately. And if they balk, the local CAC can help you apply leverage.

There is a Nolo Press book on the Individual Education Plan (IEP) that describes how to handle worst-case battles with school districts. I went in expecting trouble, and found that the school district was wonderful to our family every step of the way thru high school graduation. Good luck! Amelia, former Oakland CAC co-chair

I just wanted to say that the responder who said that Regional Center services don't kick in until early adulthood is incorrect. Early Intervention Services in California are provided through Regional Centers, and services through a SELPA/school district do not begin until age three. (to clarify, special Education services are provided through SELPA's/school districts, but special education eligibility begins at age three. What you want is Early Intervention, which covers birth - three.) So, if you want services to start as quickly as possible you should have your child evaluated by Regional Center now. They can provide Speech, OT and PT as well as an Infant Development Specialist (or pay for a social program) until your child turns age three. At three, the school district will begin to cover therapy services, but your child can continue to be a Regional Center client if they meet certain criteria, and RC will cover things like respite and medical supplies at that point. So, I guess I am just urging you to call Regional Center right away and not waste time contacting the school district at this point. Once your child is a Regional Center client and receiving services, they will help him transition into the school district at age three automatically. Also, check out the PIP Program (Parent Infant Program) through Children's Hospital Oakland. This program is amazing and is for babies through age three. mother to a daughter with special needs who has navigated these waters before!

9 months old is not too young to be accepted into an early intervention program. My own child was accepted at that age and our good friend's child was accepted at 3 months old. Each individual's experience will differ, but what do you have to lose by trying? Call Regional Center and go from there! a Berkeley mom

First child diagnosed with autism, worried about second

Jan 2012

I am newly pregnant with my second child. My first child was diagnosed with autism at age 2. While he is doing amazing after receiving incredible early intervention, I am quite nervous about baby #2. After getting the diagnosis for my son, and doing a great deal of research, I changed the way my family eats, I now buy almost all natural and organic products, etc. But I'm wondering if there is anything else I can do (take certain supplements, eat or don't eat certain foods, etc.). If anyone has been through this, I'd love to hear your advice. worried mamma

It's so great that you're able to articulate your worries and concerns. It brought tears to my eyes to read your post. I was in the same situation as you 7 years ago. You may get some medical advice or people trying to reassure you, but I just wanted to send you a virtual hug and honor and validate your fears. It's scary. Keep reaching out to people who can be supportive and ignore those who dismiss your feelings. For me, I felt so relieved to see my daughter after pushing her out. She ended up being NT but when I was pregnant with her I was also in an intense phase of trying to figure out WHY my had autism, so I beat myself up for every little thing. I hope you have an amazing birth. been there

It's good that you caught your son's autism early and gave him early intervention. My son has asperger's, we too caught it early and gave him early intervention. Now at 19 he is at a 4 yr college, living on campus, and loving it. Continue with the intervention for your son, it makes all the difference! When my son was 15 mos, I was pregnant with my daughter. We ate healthily (I didn't take supplements), limited the use of the microwave and all electronics, and did a lot of outdoors activities including long nature walks (almost daily). When my daughter was born she was perfect in every way. The most wonderful baby and a pure joy! Now at 16 yrs with a few minor exceptions every now and then, I still feel the same about her. My advise to you is to not worry. Continue to eat healthily, get regular check-ups, limit electronics, and most of all enjoy your son! Nancy

Hi, There are theories that have not been thoroughly researched that suggest that taking probiotics will help your chances of not having another ASD kid. I don't know if it will work but it can't hurt. The theory is that the flora in the mom's digestive system is linked with autism. Good luck. Hope its helpful

I would go toxic and chemical free as much as possible. I know the theories aren't clear but environmental factors have to have something to do with the rise in autism, not just reporting increases. Check out Goodguide.com and find healthier products for you and your baby. All the best. Also pregnant

Hi, The use of anti-depressants in pregnancy has been linked to an increased risk of having an autistic child. http://www.cnn.com/2011/HEALTH/07/04/antidepressant.pregnancy.autism.risk/index.html If you don't already you can take DHA supplements on top of your pre-natal vitamins. Vitamin D might also lower the risk of autism http://www.vitamindcouncil.org/health-conditions/neurological-conditions/autism/ Anon

Pre-K boy with autistic behavior

Nov 2010

A close relative's 4 yo son is delayed in his language skill, does not want to read and has a hard time learning numbers. He seems to play well in a 2 kids group but beyond that, he does not seem to interact with them well and retreats to play by himself like hiding under sheets, tables or plays with his airplanes. Recently family members and some of whom are in the medical profession told the mom that her son may be in the autistic spectrum and to seek help. The mom told the pediatrician about her concerns but the ped just said her son is just quirky, like the Dad, without even seeing him nor a more detailed examination. To family members, the Dad is a case of undiagnosed autistic with many obsessive behaviors and socially challenged. He is recently unemployed and probably will never find employment again. What is especially difficul to tell whether the son is truly languaged challenged or not is the family is trilingual with French being the dominant language. The most disburting symptom is the son has an extremely high tolerance for physical pain. He would crash his body on objects while playing and never even says owie. He doesn't seem to learn from the painful situation and will repeat it. Family thinks may be something is not wired properly for pain signal to reach his brain. Finally after much efforts, the ped agreed to refer the mom to a long list of specialists and Stanford being one of the institution. But the waiting time is at least 6 months. The next referral was for a Developmental Pediatrician who does not accept insurance and an initial consultation is at least $400 per hour. Family is in San Jose area and can use words of wisdom from families that have traveled this journey...where to seek the right help without severe financial strain. Family was in denial and now starting to seek help. Much appreciated.

She can request that a Psychologist at the School District give him an assessment for services, if he is autistic he would qualify for a free pre-school or special day class, and most likely speech therapy depending on the level of his delays. It sounds like he may have at least a sensory Processing Disorder and be sensory seeking, my daughter loves to crash into everything and needs this extra input to help regulate her behavior and moods. Here in Oakland there is an agency called Family Resource network located at Bananas that would be able to give her advice, I do not know what agency is in San Jose but every county has one, she could call the one here in Oakland and ask for a referral to her local agency. Vicki

Suggest to this mother that she call her local school district and request a full evaluation. This would not end in a medical diagnosis, but would help her to get appropriate educational services if he is eligible. Good luck! Sarah

I'm so sorry to hear your friends son's dr. didn't respond right away (and even earlier in annual check ups) to his symptoms. The federal gov has an early intervention program for 0-3 yrs old that is covered 100% by the government to diagnosis and treat kids in this age range. The Regional Center of the East Bay (www.rceb.org)tests children (I think of all ages). If he were under 3 they could have rec'd free services. I recommend contacting them to see if they can help direct them to resources in their area as well as maybe government covered resources. Another resource is the public school system, particularily if he isn't speaking well yet. They should be able to test many areas for free even if he's not enrolled yet. They can also provide at least speech services now and maybe some other early intervention services. Contact the local school district office and write a letter w/a formal request. I think they have to respond within 30 days. I suggest they look up the proper language to request such services on the web and put in the school's reponse requirements in the letter to get the school district moving on it. They tend to move a bit faster if the request is in writing and the parents site the deadlines, what they are entitled to etc. Another option is to contact www.cwtherapy.com in Oakland. They have testing and services, but do cost a bit. They may be able to provide resources in the southbay too. The sooner he gets treatment, the better. Early intervention helps out both the parents in finding useful parenting tools, as well as helps the child improve or overcome some obstacles. anon

Has your relative contacted the special education folks at the boy's school district? One aspect of special education law is ''child find'--the obligation to locate and serve students with disabilities residing within the area.

Since early intervention is key in autism spectrum disorders, and since IDEA covers pre-school children as well, many districts have services. My district has a Diagnostic Team, including school psychologists and speech therapist, who evaluate children suspected of having special educational needs.

Might be something to look into. There's also the Regional Center. I'm not familiar with services in your area, but a little Googling would probably nail down where these folks are located and whether they can help. Sonia

Worried about my chances of having a child with autism

April 2010

I am planning to try for a baby, but have to admit that a fear in the back of my mind is the probability of having a child with autism. While I know there isn't concrete evidence of genetic links, it seems that researchers are leaning that way. My husband's family (all on the father's side) includes a sister with an autistic 7-year old, a cousin with a highly autistic 11-year old, another cousin with a 7-year old with Down's, and a 17 year-old nephew with ADD (same cousin). In other words, in a family with 8 cousins/peers on the father's side of the family, three of them have children with developmental disorders. While I know these kids have their own joys, I am obviously anxious at the prospect and hardship/challenges it brings. I am 36 years old and already nervous about the increased chance of complications. My questions are: 1) is there hard evidence of this tie?, 2) any advice on how to approach this fear/risk?, 3) how can I discuss this with family without offending them?, and 4) are there early/pre-natal indicators of autism in the womb? Thank you. Feeling guilty but scared

You cannot discuss this with family members who already are raising a child with special needs without offending them. You need to get yourself to a Genetic Counselor who can give you correct answers to your questions. anon

Hi! I am not giving you advice, but am going to give you some statistics about my family tree. My son has Aspergers/ADHD My brother has a degree of Aspergers My 3 male cousins have - ADHD, ASpergers and Dyslexia And I know that the older generation of men - my uncle and my mom's male cousins - all have something going on. I have been coping with a special needs child for a while now, and it takes a LOT out of you. Make your decisions with care. Wish you the best. anon

Call your provider and ask about genetic testing? Use a donor to conceive? I'd think there'd be many solutions in this area so start with getting sound medical advice. Consider your options or if you really want kids. Adoption?? mom to many

Any time you get pregnant it's always going to be a genetic roll of the dice. Having developmental disorders in the family may increase your probabilities of having a child with a developmental disorder, but there's always a chance something might go wrong, even if you don't. My oldest son has autism and my younger son had something like a 33% chance (?) of having it, too. We rolled the dice, anyway and he is so far neurotypical. There have been studies but as far as I know there is no hard evidence, and there are no pre-natal indicators as autism is diagnosed by observation of behavior and not by any hard and fast test. I'm not sure how you can discuss this with your family without offending them; honestly, I'm a little offended and I don't even know you. The good news is that since you have the family history you'll have help in recognizing the signs early, if there is, in fact, something to recognize, and you'll be able to get help early, because the earlier the diagnosis and treatment, the better the long term prognosis. Good luck. Jill

I think my 3yo niece is autistic but her mom doesn't

May 2009

I just visited my sister's family. She has a 3 yo girl. I have repeatedly felt something was off with ''Nell's'' development. I feel she may have some form of Autism or Sensory Process Disorder. She has many non-typical behaviors for her age. I base this on development of my own child, contact w/ friends' kids, and kids' behavior at my girl's daycare. 'Nell': tiptoe walks, does 'echolalia', speaks in a bizarre lilt, squeals randomly, is obsessed w/ hair, rarely makes eye contact, will play with strands of others' hair, saying ''Hayurr!'' repeatedly, gets emotionally overwhelmed easily, etc.

However, she enjoys contact, giggles, is sweet and gentle, loves books, collecting things outside...So she isn't fully enveloped by a miserable state of being. Here's the rub. My sis and her hub. are completely oblivious to any of these things as indicators that something may be wrong. I am shocked their pediatrician hasn't noticed. I am sad sis and her fam. do not have social contact w/ anyone with similar-age kids. They live in the country and haven't sought socializing opportunities for Nell. They may start her in a preschool this Aug. I feel that may help them observe a cross-section of her age group. Maybe they'd see Nell isn't ''like'' most other kids.

I do not have a great emotional bond with sis. She's not 'California' and I am, to put it briefly. I have tried to have deep talks with her in the past. They mostly end w/her crisply thanking me for advice then blowing it off, or w/ her getting angry or mocking me for whatever I am sharing with her. She resents me for my ''having an easier go of life'' than her. She is very intelligent and has a devastating ability to cut me down and cut me off if I displease her. I fear her and I love her.

Nell has a peanut allergy which causes dark under-eye shiners. She has eczema. I worry that her behavior, sunken eyes and eczema will target her for scorn by her peers. My sis as a kid was bullied due to her own odd, shy, intelligent ways. My heart breaks as I see her daughter sewn deep in a cocoon of behavior and impulse and allergy. I feel sad that sis and her hub may never see these things. I am at a loss. Am I over-reacting and out of line, or if not - should I share what I feel about Nell? I love that little skinny scrap of a niece. I don't want her to hurt. But I don't want to lose my sis by dumping on them my possibly unfounded fears. Advice? scared little sissy

You sound like a kind sister who's trying to help! I work with kids on the autism spectrum, and it is a wide spectrum with no one looking the same. (Girls also present a little differently than boys--usually with better developed social relatedness and more socially appropriate interests.) It sure sounds like your niece is on the spectrum, possibly has high functioning autism.

Even pediatricians in urban areas miss the diagnosis, so it's important to be proactive. Also, since the earlier the intervention, the better, I would recommend mentioning it to your sister (or asking someone else to mention it) so your niece can get early intervention (from the school district after age three years). Then you'll have done everything you can do, and then you can let it go.

Allergies are common in kids on the spectrum, and some treatments take that into consideration. Some diet modifications can help some kids (gluten, dairy, etc.) I hope your sister can hear it and get help for her daughter. anon

This is more important than offending your sister; you need to tell her your concerns and get your niece the help she needs. Research shows that early intervention is a child with autism's best chance for making progress developmentally. Months and years are precious at this age, and there is no time to waste in getting a diagnosis and services to support her development. Best of luck to you in your conversation with her. I hope it goes better than you expect it will. A local Occupational Therapist

You are over-reacting, and you are out of line. This child does NOT sound autistic. And what is ''California,'' anyway? --California girl

First of all, I wish that people would not be so quick to diagnose a child with a few or even several quirks with autism. It takes a specialist to do that and even they don't always agree. There are several other things it could be. I do appreciate your concern for your niece and I don't think it is entirely unfounded. Unfortunately it doesn't sound like her parents are going to be open to hearing it from you.

You are in a very difficult position because if she does have developmental or speech problems early intervention is critical, but that is not going to be possible unless her parents are on board. Is there someone who they would be more receptive to? Another family member or a friend? If you know who the child's pediatrician is you could share your concerns with her and have her keep an eye out for the behaviors you describe. If they do start her in preschool, perhaps a preschool teacher could be of help. If you do tell your sister you think her child has autism, I can pretty much guarantee you will be met with anger and defensiveness and nothing productive will be achieved. Mom of a special needs kid

I'm the mother of an autistic son who is a preteen. Yes, autistic children stand out. Perhaps her going to school is a GOOD THING because they can have her tested and then provide her and her parents with services she is entitled to. Having an autistic child is a blessing as it shows you so many different perspectives in being a parent...just try to stop comparing...autistic children can be extremely talented in some areas...try to figure out what they are and be willing to learn something new from an ''expert.'' Be hopeful and perhaps your sis will be open to the world of autism...parents go through denial before the love for the child opens up the acceptance to a new and different world...good luck! Think positive. anon

You are a caring Aunt and I think you feel your concerns need validation with acceptance but they do not. It seems to me that your sister may feel your contempt, and though you may genuinely be concerned, unless you modulate your feelings about your sister and your niece's health she will not listen. I did not care for the way you refered to your niece. I only hope you are more compassionate in person. I also hope that even if she is a child with Autism you will support her growth with positivity and love. I do not know what ''Californian'' means being a die hard New Yorker transplanted to N. California years ago, but if you have a I'm more (fill in the blank) than you attitude forget it.

Stop comparing. Stop talking. Your sister heard you and sees other children. If her child has food allergies she is dealing with a lot. Yes, there is a link between food allergies and Autism. Talk with your sister about maybe how stressful her daughter's allergies may be for her. Get into her world with no judgement and listen. If she trusts you and feels supported she may be open to listening to you.

My son has a speech delay. I sensed it before anyone did-even my doctor. What I strongly resent and will protect him from is the way relatives and friends globalize the delay as if that is all he is about. I have seen how relatives will act differently around him. We all are different. Some of us are differently abled. What you can do is button your lips and gather resources to give your sister if the need arises. wishing your niece the best!

I feel for you. I think that because of your difficult relationship with your sister, you should just let them find out on their own. Seems to me maybe already they know that their daughter is ''different'', if they haven't already made play dates with other kids. Could they be afraid? 3 is really old to not have had some social contact with other kids. As you said your niece will start preschool soon and someone is bound to say something to them then. I know you want to intervene but it's their life. Just hope your niece will find a wonderful accepting place! anon

Could my 3-year-old be autistic?

April 2008

My 39 month old boy does seem to be an odd one. Ever since he started speaking he has had immediate and delayed echolalia, reversed his pronouns for a while, does seem to not interact too much with other kids (but is not scared of being in school). To me the most noticeable issue is that he never seems to talk to any other kid. He will happily follow a kid around but nothing is said. He hit all his motor milestones within the age range and does not show too many typical signs of autism. He maintains eye contact, is not a picky eater, no spinning objects, no self-destructive behavior etc. He does repeat entire books to himself - but when I ask him what he is talking about, he is always able to tell me.

He is very verbal but his usage seems to be developing somewhat differently...he repeats random phrases from time to time and does not seem to know why he has said a particular thing. He does have one seemingly rare speech peculiarity...he re-emphasizes the last sound in certain words...eg milk when he says it sounds like milk-lk-lk-k-k-. Neither his pediatrician or speech evaluator know what this is.

Sometimes I think he is not able to comprehend what is being said, even though I know he is trying. The other day I said, 'do you want to go now' and he echoed it back to me as 'do you want to bring a cow?' Could he have some auditory processing issues whose symptoms mimic autism?

He has passed a recent hearing test and I have gotten him evaluated twice. The second evaluator reluctantly gave him a pdd-nos diagnosis but told me that he might just 'grow out of it.' He does seem to have some sensory issues - big stores and malls cause massive tantrums, he is not really into imaginary play in a big way (though he does run around in a spiderman costume), describes every single thing he or anyone else is doing and goes into a trance from time to time.

On the other hand, he is a smart little guy. He makes some cool connections, and is very affectionate with people he knows well. He is an intense kid who seems to be improving but is not really ''on track.'' I want to get help sooner rather than later as I hear early intervention has the best results. But I am not sure what the problem really is. Others have noticed some peculiar speech stuff too - a friend thought he had a monotone going but even this does not seem to be consistent.

Any insights and advise is GREATLY appreciated. confused

Hmmmm. That's a toughie. The problem is that there's so much about autism that we don't know. Without an actual test to rule it out, we're left to just guess based on observation, so naturally you're going to hear something different from each person you talk to. Something I've learned in my journey with autism is that there's a very fine line between ''autistic,'' ''ADD/ADHD'' and ''Sensory processing disorder.'' I know that it's no coincidence that these issues affect boys at a rate of 4:1 to girls, I just don't know why (and unfortunately neither does science.)

I can tell you with certainty, however, that my son, whose diagnosis of pdd-nos at 33 months was not given reluctantly, always had excellent eye contact, never spun, never was self injurious and from the day he started speaking, he repeated what he heard. We were also told that he might grow out of it, but instead he grew ''into'' it and his diagnosis was changed to autistic disorder just past the age of 4.

It's possible that you might never get an answer to your question, in which case you'll need to be able to answer, for yourself, how important it is that you find out. I know that your goal is to get help for your son, and as soon as possible, in which case I would advise you that with a diagnosis of pdd-nos already in hand, you should head to your local school district (since he's older than 3) and start some OT and speech, possibly a home program, in addition to school. There's nothing wrong with too much intensive intervention; worst case scenario you'll find out he never really needed it. Actually, the *real* worst case scenario (IMO) is to find out later that he did really need it but you didn't do it. While it's never too late to start services, it's true that the earlier you do it, the better he'll be in the long run. Feel free to contact me directly if you want. Jill

All of what you wrote sounds fairly normal. The confusion of what is said if this was happening all the time I would be concerned. I know of several kids who thought that I said something else. Sometimes it is how one is processing the information or thinking about something. Sometimes others including ourselves we do not annunciate clearly, especially if one talks fast or does not move their tongue, lips and teeth enough to place the sounds correctly in the mouth. (By the way, on the west coast we tend to talk faster than our friends in the south.) Here is what I really think... some kids do not know how to interact with another child. (This I have seen several times.) Imagine having to interact with an animal or people from another culture if you do not spend a lot of time with them --how do you act and what do you do? (Do you ever notice a child watch a group of people- even other kids- with complete fascination or fear?) As an adult you may have to show your child how to play, and how to interact with others. Interacting with others is not as intuitive as it may seem. There are social things that some children really do not know anything about. It may seem frustrating if this is something that you take for granted and just think your child should know. Everyone is different and everyone has some learning that has to do with learning beyond reading, writing and arithmetic. Just show him how to interact and describe what you are doing. Nanny in the know

Your son sounds very much like my daughter at that age- she was a precocious talker but had odd prosidy, echolalia, memorized and used a lot of stock phrases from books and movies, sometimes out of context, and did not interact with other kids though she was affectionate at home and didn't exhibit the classic signs of autism either. We did a lot of research and got a reserved diagnosis of asperger syndrome. She displayed maybe 10 of a list of 40 common traits of asperger's. She got some speech therapy to help with pragmatic language but the most useful classes we got for her were social skills groups with a private therapist. Now she's 14 and doing great. She doesn't identify herself as having Asperger's and she fits in well at school and has friends, and she doesn't get pulled out for any special classes. She is happy and so am I. Remember that autism is a very wide spectrum. Maybe your son, like my daughter, has just some of the characteristics of the high end of the spectrum. I'd read more about Aspergers and see if the description sounds like a match. Good luck! Michelle

Your son sounds very much like my 4 year old - down to the the milk-k-k thing! He was diagnosed with ''autistic-like'' behaviors by OUSD last year, thus qualifying for autism services through the district. The psychologist told us he has Hyperlexia but that's not an actual diagnostic category.

I used to ask myself the question ''Autism or not?'' just like you. The ''A'' word is scary at first and no one wants that label for his or her child. However, in some ways, I've come to believe that whether it is or isn't autism doesn't matter. It sounds like your son, like mine, has echolalia, challenges with social language and social skills, difficulty with auditory processing and mild sensory issues. Whatever you call it, these are real issues and real challenges and you are right to trust your instincts and seek out support.

Getting access to early intervention and teaching techniques that can help your son develop the skills that don't come naturally to him is what's important now. A diagnosis is about your eligibility for those services and therapies, not a judgment about who your son is or will be.

We've had a wonderful experience with OUSD's early intervention program. My son goes to a language-enriched preschool program and has made remarkable progress in the past year. If you're not in Oakland, your district may have something comparable. The East Bay Regional Center is also a good resource.

Please feel free to contact me via email if you'd like more information. I also write about raising a not-so-typical child at http://hyperlexicon.blogspot.com/ Your son sounds like an awesome kid and the label won't change that! Christa

It sounds like Asperger's, which is a mild form of autism. The language problems are much more subtle than frank autism and are very similar to what you describe. Your description of your son sounds nearly identical to how my son was at that age. We took him to many doctors, and finally, at age six, a neuropsychologist said Asperger's. If you have a PDD/NOS diagnosis, use it to get Speech/language therapy. You probably want to look into an early intensive therapy program such as ABA, RDI, floor time. Feel free to e-mail me offline. Don't do nothing, it is so much better to intervene rather than wait and see. Also, contact your school district, but be weary of what they tell you, as they don't want ot pay for the expensive interventions. Karen

Your son sounds a lot like my son, who also has a PDD-NOS dx, but does not fit i the stereotypical autistic mold. You are right that you absolutely do not want to wait for him to ''grow out of it.'' At this age, children are developing so rapidly and the gap between him and his peers may just continue to grow wider.

Write a letter to your school district asking for a comprehensive psychological and pragmatic speech evaluation and if possible walk it into the office yourself and have them date stamp it. I am not sure what school district you are in, but try looking up the office of Programs for Exceptional Children or Special Education and address it to the director of that department. There is a process where they have to respond within 15 days, you sign a consent, and then they have 60 days to do an evaluation not including breaks, so it may not all get done before summer at this point. Once they evaluate him, if he qualifies he can be placed in a public preschool immediately that will address his needs. You can include a written report from the doctor that gave the PDD-NOS dx in his school evaluation. Also, if you haven't already, you can get an evaluation from the Regional Center to see if he qualifies for any services there. If you want to get him into some kind of intervention while you are waiting for all of this, there are preschool aged playgroups at Word Works in Oakland that focus on social skills and language or call the Angel Network in San Francisco to find an integrated playgroup. Also, have him evaluated by an occupational therapist for his sensory issues. You might want to read the book ''The Out of Sync Child.'' Good Luck. Been There

Hi - I read your post and I really felt for you and could relate to your confusion. Your son sounds very similar to my own son who is just turning three this month. We started the process of getting him evaluated about 9 months ago after his preschool teachers and others, started commenting on his odd behavior. Our little guy has the same difficulty with language you describe - the reversal of pronouns, the delayed and immediate echolia, the tendency to memorize entire phrases or sentences. He doesn't technically have a speech ''delay'' but we started him in speech therapy two times/week and he is definitely benefitting from it. Have you considered this? our insurance covers a portion. My son has trouble talking to kids, is better one on one with adults. Also you said you had him evaluated and he rec'd a pdd-nos dx. Was this from a developmental pediatrician? If so, did they recommend a treatment program for him? It might be helpful to tell you what we did in my son's case. We had him evaluated by two different developmental pediatricians (if you need names, I can help) and he also rec'd a pdd-nos dx from one and a aspergers dx from the other. My son has more sensory issues than it sounds like your son does- for example, he is always jumping in place, highly active, aversive of other things, ie. certain textures/foods. After the evals, we started him with early intervention services thru the State (regional center of the east bay), including an aide at his preschool to help him socialize with other kids, speech, occupational therapy and an afternoon program of ABA which is also helping with his language development and play skills. If your son is already three, then you have transitioned out of early intervention services thru regional center, and need to discuss the situation w/ the school district. One idea is to have a private speech evaluation done, and then call your school district and request an IEP, send them your private speech report, recommending services, and then have the SD offer your son speech therapy and whatever else.. We figured that our son might ''grow out of it'' but that a little extra help wouldn't hurt things... Even with the extra help for our son, and he is making good progress, it is still apparent that he is developing differently than other kids. if you want to talk more you can call me 847-6877 Been There

I wonder if it's Tourette's Syndrome? It's a form of compusive obsessive disorder. People can be fully functional with some odd things regarding speech and thought patterns (really PATTERNS). I would take your son to another Dr. maybe a psychologist? Sounds interesting actually, wow, he can remember whole books! Good Luck. anon

You should ask the school district for an auditory processing evaluation. Auditory processing problems happen when the hearing itself is fine but the sound gets processed in a garbled way by the brain. Your son sounds a lot like my daughter in many ways. My daughter did that thing where she emphasized wierd parts of words also and her speech therapist didn't know why either. The hearing you say one thing when you said another is classic for someone with auditory processing problems. My daughter used to repeat what people said to her so it seemed like echolalia but really she was repeating it to help herself process it. As your son gets older you can have very specific tests that break down the component parts of auditory processing. You put earphones on and then they test you for specific skills. You can have a very strong auditory memory but then mishear things frequently or not hear the parts of words distinctly or not hear against background noise. I wish I could tell you that we got a firm diagnosis for my daughter but we never did. We've been back and forth about the autism thing also and usually end up on no, she's not. I would focus on what your sons specific needs and strengths are to help him develop. You can move forward with treatment by addressing his needs (social skills help, phonemic awareness when he gets older) without an overall diagnosis. best wishes

I can't tell you if your child may be on the autism spectrum or not, but I CAN tell you that both my sons (now 6 and 9) have the same odd stutter at the ends of words, and have had it since they were small. Neither is on the autism spectrum , but both have some motor issues and learning differences. This has NOTHING to do with intelligence, (both are very bright do very well in school,) only with the ability to perform certain kinds of tasks. Some of your son's behaviours remind me of my older boy's at that age.

I would say you have valid concerns and might consider having your child evaluated. If you can get referred by your pediatrician your health insurance might cover at least part of it. The advantage of testing now is that if your son needs help in school or out if it, he can get it early, and at the very least you will be aware of areas he might need help with later.

I would love to hear if anyone else has insight into this particular odd stutter. If the stutter is causing him problems, you can get free speech therapy through your school district. It helped my younger son a lot, and made it easier to get him access to other services once he was in school, since he already had an IEP for speech.

Don't worry, but do follow up on this. stutterer's mom

Your description sounds a lot like my son who did not have a definitive diagnosis until recently. (He is 8.) He has auditory processing problems and problems with interpretting social interactions. You might consider doing research on ASD, autism spectrum disorders. If you would like to talk about it directly, email me. (Also, I run a free program for families with special needs children (ages 2-4) at the YMCA. You might find our support group helpful.) rl

Dear Confused, My 34 month old son sounds extremely similar to your son -- the echolalia, reversed pronouns, wants to be around kids, but does not talk to them, emphasizes the last sound of a word (yessssss), has tantrums at crowded places, etc. The only difference from your post is that my son IS a picky eater. Since he was under 3, we had him evaluated through the Regional Center and he received the diagnosis of PDD-NOS provisional (which means that he may or may not ''grow out of it'').

Through the Regional Center, we have recently received the following services: speech therapy, occupational therapy, in- home behavioral/ABA therapy. We are also giving him some supplements like fish oil, etc. And I have to say for the past four months, we have seen some tremendous improvements. He still has a long way to go to catch up with his peers, and he still has the echolalia and other speech issues. One thing we are going to start doing with our behavioral therapists is have some supervised/guided play dates, so that the therapist will help my son interact with the other child.

So, I'm not sure if I'm answering your question or not, but from my non-professional opinion, it does sound like your son may fit somewhere on the autism spectrum - at ''high functioning'' level, and that he may benefit greatly from therapy. I'm not sure if you've already done so, but I think the first step is to contact your school district to see what services they will provide since he is over 3. J

I think my 3-year-old has autism

Nov 2007

I think my almost 3 year old son has autism. We have a Dr. appointment tomorrow, but my day care provider has noticed the same things I have. It seems like he's on the milder end of the spectrum, but all the web searches I have done have very depressing prognoses. Can any of you tell me what autism is like when a child is school age or older? My son started speaking when he was 1 but stopped making progress when he turned 2. He can't start or keep up a conversation, and instead repeats exact phrases he has heard from his favorite tv shows. Although he makes great eye contact with me, his teachers at daycare say he sometimes avoids eye contact and prefers to play by himself. He loves to be cuddled, unlike severe autistics, and expresses affection to me and his dad. He points and wants to share what he sees but has a hard time expressing himself. He doesn't have any motor deficits, but sometimes flaps his hands when he is very excited. Not often, though. Does it get worse after 3? How much worse? Was your child like this at 3, and if you started treatment, how much improvement did you see? I am very distraught about this and would really like to hear positive stories of how your autistic child is doing. Very sad

I would be careful not to jump to conclusions from what you described. Autism is getting to be the ''in'' diagnosis for all sorts of other disabilities in speech and language and socialization. My child got that label for similar behavior and it wasn't until a friend suggested we have her hearing checked that we found out she had a moderate hearing loss. That caused her delayed speech and consequently poor socialization. You should get a thorough diagnosis first. Your pediatrician can refer your child to a neurologist, a speech and language pathologist, and a developmental pediatrician or behaviorist. When treated early, all disabilities including autism have good prognosis. It is not the label, but it is how the disabilities are treated that is the most important. Try and not worry. Progress does happen with the right suppost services. Been there too!

I am SO so sorry. By now you will have had your doctor's appointment and might probably have some more information, and I'm sure you're totally overwhelmed by all the information and options and everything. Right now you need to find some support for yourself as well as for your son.

Your son sounds a lot like mine did at that age, except mine didn't point and want to share, so that's actually pretty good news for you. Pointing is the #1 diagnostic indicator of autism, so the fact that he does point is really good. For us, things got really bad around 3.25 and stayed bad for about a year. But then things got better, and now he's almost 6 and in a regular ed Kindergarten.

You'll hear a lot from a lot of different sources about miracle diets and miracle therapies and miracle supplements, but keep in mind that not every treatment is going to work for every kid, and you have to do what's best for your child, as only you know. However, intensive treatment as soon as possible, no matter what kind you choose, will give your son the best chances. It's a lot of hard work for both of you, and you'll have a lot of different fights on your hands and it's not going to be easy, but hard work now will pay off later. My son never spoke except to recite things he'd heard on the TV or the computer, and now he asks meaningful questions and can have a conversation with a peer.

I'm sorry you're sad, I was in your shoes 3 years ago and I was very sad, too. Please feel free to contact me directly if you want to talk more. Jill

My daughter was very similar to this. She did the hand flapping, she would repeat phrases from TV shows out of context, and she had a delayed speech development. She had extreme problems with anything out of her routine, and any loud or mechanical noises (blenders, vacuum cleaners, lawn mowers) would send her into a state of total panic. At one point, the sight of a vacuum cleaner sent her into panic.

I guess that I went into denial about the possibility of autism, and focused on something called ''sensory integration dysfunction'' I took her to the pediatrician who didn't want to label her. So, we recognized there was something - we didn't want to call it autism (which I think is now being overdiagnosed, just as ADD was a few years ago) but we did know that there was something. Among the things we did - we focused on routine, and talked to her a lot if the routine was going to be broken. We enrolled her in gymnastics and music courses. The music course was a HUGE help. At the age of 4, a new teacher at her preschool asked if she was an early talker, because she talked sooo much and soooo well. We talked her through loud noises and convinced her that if she understood what they were, she didn't need to be afraid of them. (she now says about the blender ''I am not afraid of it, but it annoys me'') We worked with her a lot on eye contact. Today she is 7 - she is in first grade, reading at a 3rd grade level. She is also in an Aikido class and taking piano lessons at school. She is also making good friends at school, at brownies, and in the neighborhood. Quite the change from the little girl who never wanted to be with anyone. There are still oddities about her - but overall she is great.

Here is the moral of the story. Take a deep breath - you know your child better than anyone else. Do research, read, talk to other parents, and recognize that your child is unique. Work with your child to overcome some of the issues, but understand that the issues are real. Don't let anyone put your kid into a box. Listen to what the professionals say, but trust your own instinct. Lee

My son had similar symptoms at 3 years old as well. His diagnosis is unclear (professionals ranged in their assessment), ranging from Asbergers to non-verbal learning disabilities. Regardless of the diagnosis, the behavior therapy is the same and often effective. Initially this was very difficult for me, but my interaction with the professionals skilled in the area of child development give me great home. There is a lot we can do for these kids. My advice is to get him/her assessed by a child development specialist and get all the information you can. We see Dr. Brad Burman occasionally, a speech therapist, and an occupational therapist. Once you get beyond the ''what'' to ''what can we do'', you'll feel a lot better! Good luck- Anon

Hello! My DD does not have autism but has other developemental issues so she attends playgroups and soon preschool with kids of various special needs including autism. I have gotten to know many kids ''on the spectrum'' and their moms. I have to say each child i know who has autism is just as different, unique and individual as any other child I know. For any of our children it is so hard to predict what the future will be as each child has their own unique talents and personalities. It is hard to get a diagnosis for your child at whatever age and their is a grieving process that goes along with it for sure. But i can't tell you how helpful and empowering it can be to build a team/community for your child. Meeting and becoming friends with other families in the special needs world has been a great gift to us. We also have found a wonderful group of therapists who support our daughter and us during celebrations and rough patches. It is scary at first to be sure, but there are people out there to help you, your son and your family. Sending you positive thoughts and knowing that it does get better. Proud mom of child with special needs

It's important to know that many children with autism make alot of developmental progress with the right enough help. And most doctors won't tell you this, but some children with autism recover completely from it. Many of the current new cases of autism have to do with the interface between genetics (predispositions) and environmental insults (vaccines, pollution, repeated antibiotics, etc.) Websites to go to are: Autism.com (the Autism Research Insitiute, based in San Diego) holistichealth.com autismtreatmentcenter.org (parent training to work with your child) These are not your usual resources; most doctors won't given them to you. The fact that your child was doing better and then began to show these signs of autism points to the interaction I mentioned above; ARI (the first website above) and Holistichealth.com could be significant resources for you. I'm a parent of a wonderful autistic guy, and I don't know what we would have done without these; they've helped us alot. MK

You must be worried sick, but PLEASE don't go down that road until you have an official diagnosis, and if possible, a second opinon. A friend of mine had her daycare provider tell her they suspected Asperger's and had her running in circles -- turned out not even to be the case. There can be many complicated factors and look-alike symptoms. You mentioned you are going to see a doctor very soon. Once you get some concrete facts, take it from there. In the meantime, try not to stress! Montclair Mommy

Autistic - sort of? 6-year-old

May 2007

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!

If it hasn't been done already, consider getting a specialized OT evaluation for sensory processing issues (aka sensory integration disorder). ''The Out of Sync Child'' is an excellent reference you might want to check out as well to see if you think there's a fit. Sometimes kids with sensory issues can ''look'' autistic in their social behaviors when they're with people they aren't comfortable with, but are fine with close family. And many autistic kids have sensory issues too. My kid's ''sort of austistic'' too

The autism spectrum is very broad so your son might be on the edge. It's possible that he has PDD-NOS (Pervasive Developmental Disorder-not otherwise specified). Despite the scary title, this can be a very mild condition. The son of a friend of mine has this and he's learned to make friends and has done very well in school. People with mild forms are quite able to sense emotions in others and express their own. My son, who has Asperger's Syndrome and had severe symptoms at age 6, was still able to form a close bond with me and express affection. I would recommend that you have your son evaluated and see if he does fall into one of these mild categories. There are lots of positive interventions, so even if your son does have a mild diagnosis, I'm sure he'll do quite well. Good luck. Nancy

Sigh. This is a hard one. My child also has social issues, but nothing diagnosable. Realize that the school district has to provide an IEP if a child has a diagnosis. Then the school district has to provide services to that IEP's specification. (I'm not an expert in this; my son doesn't have one, so sorry if I got anything wrong.) This is great, to a certain extent, because you don' thave to pay for what the school district provides.

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

I'm not an expert, but I do understand that the spectrum for autism is vast. Perhaps he's very close to the edge but still on the spectrum?

Autism is a spectrum disorder, which means there's a very wide range between ''autistic'' and ''not autistic.'' Oftentimes the line between ''autistic'' and ''typical'' is really REALLY hard to see. However, in my experience, and in answer to your question, yes, one can be autistic and still be able to read expressions well. One can also be autistic and also relate well. One can also be autistic and make good eye contact, be affectionate with loved ones, make friends and still ''seem'' perfectly typical.

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

Look in to Asperger's Syndrome. It was the answer for my son. read up!

Your son sounds like a unique and worthy individual and I wish you the best in helping him to find his way in the world. A few years ago, I worked with a pretty high-functioning autistic boy in a play group. I was the facilitator and we had some other children involved and we just had a couple of hours a week to practice playing. The goal was to help the boy develop better social skills and to encourage him to build his imaginative play skills. I must say that it was often really fun, even for me, and I bet your son would benefit from something like this. There is a Bay Area therapist who specializes in this imaginative play therapy, but I don't live in the area anymore and I can't remember her name. Sorry! I believe she taught/worked at San Francisco State. I went to a workshop she taught in the area once. Good luck tracking her down and finding resources for your son. Elizabeth

Sometimes even typically developing kids need to be taught social/language skills in an organized, step-by-step fashion. Your child may benefit from social skills or pragmatic language groups. Also, he may have sensory-motor and/or motor planning delays which would affect his sense of space and proximity, as you described his interactions in the park. You might want to consider having him evaluated by an OT, if you have not done so already. Good luck! anon

Hi, Autism is a very broad spectrum including Aspergers and can present itself very differently in individuals. I obviously can't diagnose if he has it or not, but a good local resource for play and social skills is Pam Wolfberg at San Francisco State in the special education department. Her focus is Integrated Play Groups and Autism. Website for Integrated Play Groups http://www.autisminstitute.com/

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

My 5-year-old also has what has been labeled ''autistic-like characteristics'', yet does not meet the clinical definition of autism. Nor does he meet the definition of Asperger's, or anything else for that matter. He loves people, and relates well to his family (he is very sensitive to me and my moods), but has difficulty with social skills.

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

Autism is a ''spectrum'' disorder - there's a huge range of behaviors that fall somewhere on the general spectrum. It sounds like your son, while not fully autistic, is somewhere in that range. Dorine Slocum, of Vida Behavioral Solutions in Oakland, works with kids like this - kids who have any of a range of social-skills problems. I know she's worked with autistic kids before, but she also works with kids who just don't get the nonverbal cues (how close to stand, how loudly to speak, etc.) that make social interactions work. You can contact her by phone at 510-835-1272, or online at www.vidabehavioralsolutions.com if you prefer. Hope this helps! Kathleen

Hi, ASD has a wide range of behavioral patterns on the spectrum. It sounds as though he may lean a little more towards Aspergers syndrome. You can have him evaluated for this if you think it is necessary. Regardless, yes children can sometimes read expressions and lack the ability to socially interact. The training you seek is out there. Does he have any sensory integration issues that you are aware of? How you interpret the sensory perceptions you have, directly relates to how you interact with those around you. Depending on the severity of the problem, you may want to consult a DAN protocol doctor or see what services are offered by your school district. The latter usually requires a diagnoses though. Bryan

sounds like he might have aspergers. there are a few books out there. ones by tony attwood are good. behavavioral training is the only ''cure.''

Boy, do I feel your pain! My daughter has various ADHD type and learning disability problems depending on who you talk to and which day you see her! We had a long 4 visit evaluation with multiple raters and videotaped standardized diagnostic tests at Children's Hospital and they said she was NOT on the autistic spectrum--nowhere close. (Autism should only be diagnosed using multiple raters and standardized tests--not by eyeballing the kid.) Another Kaiser psychologist said she had PDD after 2 visits, another Kaiser developmental pediatrician said she was not on the autistic spectrum after 1 visit. For various reasons I continually wonder whether my daughter is 'kind of autistic' even though she is extremely imaginative and very outgoing (but often inappropriate) socially. I've done a lot of worrying, thinking and reading about the issue. In my opinion, this type of confusion will continue until we find a 'hard' biological marker or markers for what is now probably just a loose grouping of many similar seeming developmental issues. Since there are no 'hard' markers for autism some pracitioners use a very loose definition of autism that is increasingly including a lot of kids who are just a little off socially. In the early '90s the DSM categories widened what can be considered 'autism' and at school there are bureaucratic pressures increasing the likelihood of getting an autism diagnosis--schools can not give an ADHD diagnosis but they can classify someone as ASD. This whole mess leads to a lot of confusion, and to a lot more 'autism' diagnosis which is very much in vogue right now. I think it is important to be skeptical and remember the whole autistic spectrum is a social construction based on subjective ratings of behavior. Anyway, to answer your question, yes, your son can benefit from social skills training. Lots of kids need help with social skills. Google Michelle Winner. Her program and books are for kids with all sorts of social cognitive issues. good luck

4-y-o aggressive and unpredictable, possibly autism

May 2005

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

I can give you some suggestions, online and offline.

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

Send a letter to your school district, requesting a ''Functional Behavioral Assessment.'' Since he qualifies for special education and has an IEP, the district is responsible for his education, which means how he acts in the community (outside of a structured school setting) and at home. A psychologist from the school will assess and then there will be a meeting to create a behavior plan. I *think* this could also be handled with a new IEP -- legally, you can call a new IEP whenever there's a need to change the child's program.

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

We had good success working on some behavioral issues with Behavior Analysts in Pleasant Hill. One advantage of a behaviorist is that they can observe your child and see the behaviors that occur in challenging settings and then draw up a consistent behavior plan that all the specialists can use. Good luck. asymetry

Worried that 11-mo-old might be autistic

Jan 2005

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

Sounds to me like you're being too concerned. My son didn't like signing either, and he didn't really do a lot of talking until after 2.... Just remember that kids ahve a lot of different performance levels. a mom

Breathe easy. We moms will find just about anything to worry about, but I think you can let this one go. Being intolerant to dairy is NOT a red flag for autism. Before you start to self- diagnose (which is always a bad idea in my opinion)please talk about your concerns with your child's pediatrician. That's what they are there for. Fellow mom

I can't help you on the science, but it sounds like your kid is pretty normal. Your description pretty much described my now 21-month old daughter at 11th months. She had icky major dairy issues (vomited up even the slightest bit of cow or soy milk mixed into a food such as pancake batter); she pointed, but didn't wave; ignored any attempts to teach signing; only used two words (mama and dada), but not necessarily correctly; etc. The dairy issues disappeared with her first birthday (almost to the day) and the only bizarre symptoms that she is showing now sadly are typically associated with rising two-year olds. Her verbal skills are about right, maybe a little behind, but she and I communicate easily. She is ******ly well adjusted (far better than she was at 11 months when she was suffering from a bad case of the 'Mommies'). I realize that autism is more of an issue for boys than girls. I am not discouraging you from getting it checked out if it helps you sleep better at night. but, it sound like your kid is normal. -Been there

My son was diagnosed with autism at age 2.2 years. I knew something was up with him at about 1.5 years (didn't understand language, in his own world, not interested in other kids) but waited since everyone said I was worrying too much, etc... At the two year visit with the pedi, he referred us to the Regional Center of the East Bay for assessment. It took 2.5 months after that to get the visit with the doctor -- 2.5 wasted months. We have him on a GFCF diet now and it's really not that bad once you get your head around it and find good places to shop. I've put my older ''quirky'' son on it too. I would strongly urge you not to wait but go get an assessment thru the Regional Center right away. I had to call them about 3 times before they called back. Then they sent a big packet I had to fill out describing my son's behavior etc... Then they set up an appointment at Children's Hospital. Even tho I was devastated to get the diagnosis, at least it gives us great services thru the Early Intervention program in California. Just be glad you live here! mm

Autism is such an uncharted subject that's really finally coming to light. My youngest brother, who's 12 now, was diagnosed with Autism when he was 3 years old. If my parents had known more about they're options and had better medical advice then i'm sure the steps they could have taken might have been more preventative or even just encouraging. They did choose to take a very homeopathic approach, though, which has been the most beneficial. Around the time he was diagnosed,there wasn't much information except what was being passed off as conspiracy theories, etc. So, they changed his diet, chose only organic supplements, cut all dairy and any processed glucose and sucrose products from everyone's diet and although you can't make the autism go away, you can improve his lifestyle by being focused, supportive and very aware. In fact, if this is a path you choose to take, it's recommended that everyone try to stick to the plan. There are more and more books and information being published so, you are luckier than they were. But, really, if you are concerned, take him to see a specialist. Because early intervention is you're best weapon against the odds. Good luck!! Alena

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

Aug 2004

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

Please be kind and sweet,,its hard especially when other parents point out what the child can not do. Regional center of oakland is a great place for them to contact. They have lots of people that can come to the house or your family can take them to the center for help. Just be their and be supportive and no negative remarks. Hope this helps

I just wanted to comment on some of the characteristics you describe - a friend's baby had very similar symptoms and was finally diagnosed with Angelman's Syndrome. As that is very serious, I hope that's not the case for your sister's baby, but I thought I'd mention it since it's a rare and apparently often overlooked diagnosis. In terms of how to be supportive, I've found with my friend that just talking openly about how his baby is doing, what they're going through in terms of tests, etc., and how he feels about it all, as well as allowing him to talk about something ELSE works best. He relayed a story about a friend of his with a son with developmental problems that were hard to diagnose, and that the worst part for that person was that the only thing people ever talked to him about was his son. He felt like everything else he used to have in common with his friends just disappeared, though he realized they were all just trying to be sensitive. Anyway, hope this helps. Star

Hi, First off, just wanted to say how very kind I think you are to be asking for constructive advice on supporting your brother and sister-in-law in this situation. One of our daughters has autism, and those friends and family members who've worked to educate themselves about the disorder have made a profound contribution to our household's sanity and general quality of life.

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

First of all, you're already doing one of my suggestions and that is educating yourselves as much as possible so that you understand what your niece's limitations/challenges are and won't expect too much of her as a result of knowing. You will also be able to empathize with your sister's situation and that is always helpful. My sister did try to educate herself but I didn't get too much support from my parents because they weren't forward thinking enough to say that my son had a disability. They just wanted to think it was me not parenting him the right way. It has gotten a little better but I still wish they would educate themselves more, that's my biggest wish. Otherwise, trying to give her a break would be another suggestion. Your niece needs to be able to get a break from her parents too so if she had that comfort level with you, that is so helpful. And it's a comfort for the parents when it's someone that understands that the child is not a typical child. One more suggestion, if it's feasible, is to try to go to appointments/therapy sessions with her if you can. Sometimes the doctor will just need to talk to her or give his feedback and helping with the baby would be helpful and to just be a support for your sister. I hope this was helpful to you. Mom of autistic son