Autism resources actually helpful? Asked whether they use the internet as a resource for autism many parents often do not do so — frequently as they are too overwhelmed with getting through the day. What resources have you found really useful? And why? Here’s one list below. Please share your thoughts. Thanks. DrCameronJackson@gmail.com
Top 10 Autism Websites Recommended by Parents
Searching for autism information on the web can be overwhelming. The word “autism” alone results in over 64 million hits on Google. So, where do you turn to for the most relevant information and resources when there are so many different options? We polled parents of Eden II participants, asking them this question, and these were the top 10 results:
1. www.autismspeaks.org -One of the leading autism science and advocacy organizations. Autism Speaks provides a comprehensive resource guide for all states. The site also boasts an impressive list of apps that parents may find useful, including games that focus on communication and social skills.
2. www.autism-society.org -Another great site that includes helpful resources for those with autism, family members, as well as professionals. Autism Society also gives updates on the latest autism news and press releases.
3. www.disabilityscoop.com – Sign up for Disability Scoop’s e-mail news to receive the most current updates on developmental disabilities. Disability Scoop’s experts have been cited by multiple online news sites, including USA Today and People.com.
4. www.autismnj.org -Run by a network of professionals and parents, Autism New Jersey strives to provide New Jersey residents affected by autism with the most up to date information, including info on Health Care and insurance mandates in New Jersey.
5. www.autism.com– The Autism Research Institute focuses on researching the causes of autism, as well as developing safe and effective treatments for those currently affected by the disorder.
6. www.autismweb.com – Managed by parents, AutismWeb includes great insights on different autism teaching methods. The site also provides a forum where parents can go to share their stories, give updates on their children’s progress, and share recipes that may be useful for picky eaters.
7. www.ahany.org – The Asperger Syndrome and High Functioning Autism Association website offers some great resources for those with higher functioning autism. Ahany also provides a great list of summer programs and day camps in New York, as well as useful questions to ask when choosing a camp or summer program for your special needs child.
8. www.autismhwy.com -Started by a woman whose son was diagnosed with autism, Autism Highway is both informative and fun. Easy to navigate, Autism Highway provides an extensive list of Autism related events and specialists. In addition, Autism Highway includes many fun games that children are sure to enjoy!
9. www.autismbeacon.com – Also started by the parent of a child with autism, Autism Beacon strives to supply the best resources for autism treatments. Autism Beacon presents a lengthy range of articles on autism, including sensitive topics such as bullying and sexuality.
10. www.autism.healingthresholds.com – Healing Thresholds includes information on many different therapy treatments for children with autism. The site focuses on the top 12 used by parents, but also includes useful information on nearly 100 additional therapies.
Autism screening with smartphone? Yes! This is a bold, big idea that can work if done right.
There’s now an app that researchers use to screen for autism. The app uses Apple’s Research Kit technology. Duke researchers are involved.
Researchers seek to collect information from families around the world to test whether a smartphone app can reliably screen kids for autism.
The app includes a parent questionnaire and includes a series of short videos for the child to watch. The videos are designed to elicit various emotions. Using the iPhone’s camera function, analytical software within the app will assess the children’s facial responses.
Researchers hope to collect information from children ages 1 to 6 three times each over the course of six months. Parents will receive feedback, which could include tips for addressing behavior issues or a recommendation to seek further evaluation.
“Our goal is to develop a screening, like hearing or eyesight at schools,” said Guillermo Sapiro, a professor of electrical and computer engineering at Duke. “They don’t get glasses — they get a referral.”
There are major league problems of course. Privacy of information for one. All sorts of data gets stolen these days and such a huge collection of information about people is invaluable and can be misused.
This particular research at Duke University plans to collect data only three times over six months from the same child. Results would be much stronger if results were taken for the same child over a much longer period of time — from age one to age four for example. Six months and three snapshots of the same child is just a snapshot for a very small period of time relative to general development of language and social abilities. But this is a beginning and parents may find this app useful whether to seek additional assessment.
If you are a parent in California wondering whether your young child has social development delays or other delays contact your local Regional Center and ask for Early Start Services. Early Start services assist children with developmental delays from birth to age three. California Regonal Centers provide Early Start services.
If you suspect that your child has substantial delays in several areas your child may be eligible for ongoing California Regional Center services at age three. Whereas in 2009 approximately 1 child in 155 had autism as of 2015 one (1) child in 66 has autism.
As substantially more children at being diagnosed with autism it’s reasonable to expect that more children in California (those with substantial delays in several areas of functioning and a recent, valid diagnosis of Autistic Spectrum Disorder) will be eligible for ongoing Regional Center services at age three.
If you suspect that your child may be substantially delayed in several areas, before the age three request assessment for ongoing Regional Center services. Check the website for your local Regional Center as to exactly what you need to do to request ongoing Regional Center services at age three.
For children ages 0-3 living in Santa Cruz county, Monterey county, San Benito county and Santa Clara county contact: http://www.sanandreasregional.org/early-start/
As many children with autistic spectrum disorder symptoms have behavior problems which can substantially affect overall safety of the home ongoing Regional Center services after age three can be quite helpful for parents.
If you live in Santa Cruz County and want additional information concerning your child’s developmental delays, you may contact licensed psychologist Cameron Jackson PSY14762 for a free initial screening.
Dr. Jackson’s office is in Santa Cruz, CA. (831) 688-6002 DrCameronJackson@gmail.com
Why huge increase autism 1990 to 2000? Nine (9) of 10,000 kids born in 1990 got autism. Ten years later, in 2000 forty-four (44) in 10,000 had autism.
Enviornmental causes? Yes. It’s time to focus on metals, pesticides and infectious agents says researchers at M.I.N.D.
A study by researchers at the UC Davis M.I.N.D. Institute has found that the seven- to eight-fold increase in the number children born in California with autism since 1990 cannot be explained by either changes in how the condition is diagnosed or counted — and the trend shows no sign of abating.
Published in the January 2009 issue of the journal Epidemiology, results from the study also suggest that research should shift from genetics to the host of chemicals and infectious microbes in the environment that are likely at the root of changes in the neurodevelopment of California’s children.
“It’s time to start looking for the environmental culprits responsible for the remarkable increase in the rate of autism in California,” said UC Davis M.I.N.D. Institute researcher Irva Hertz-Picciotto, a professor of environmental and occupational health and epidemiology and an internationally respected autism researcher.
Many researchers, State of California organizations and advocacy organizations view rise with skepticism says Dr. Iva Hertz-Picciotto.
The M.I.N.D. research is based on data provided by the California Department of Developmental Services. The DDS research was published in April, 2003 and is available on the California Department of Developmental Services website.
We know there is a huge increase in autism. In 2009 there was 1 in 150. Now in 2015 one child in 65 that have autism. That’s a huge increase.
So are children getting identified earlier and receiving California Regional Center services any earlier than in 2005?
Are parents in 2015 who get California Early Start services requesting assessment for on-going Regional Center services at age three?
If you suspect that your child is not developing normally in social communication abilities and your child is under age three you can request assessment by your local Regional Center psychologist for ongoing services.
If your child has a valid diagnosis of autism and is substantially handicapped in three (3) life areas your child may be eligible for on-going Regional Center services.
M.I.N.D. researchers say that California state agencies are skeptical about the rise of autism.
The facts are there. Why are California state agencies skeptical? Perhaps agencies are skeptical because on-going services for autism are expensive?
On the website for the Department of Developmental Services on the right side under publications you can find all the DDS publications available for download as a PDF file.
Contact Cameron Jackson DrCameronJackson@gmail.com for further information
CA Regional Center fails the sniff test.
Consent is a big deal. Written consent starts many important things such as: Will you marry me?
Will you have my child? Will you co-sign on a loan?
I consent that my child receive special education services. Yes consent is a big deal. For many reasons.
However, when it comes to consent, San Andreas Regional Center fails the sniff test. And this is probably true for other Regional Centers of which there are 21 in California.
Exactly how San Andreas Regional Center fails the sniff test is described below. First, some comments why consent is so important. Think about consent in general and why written consent is important:
Most people understand that consent matters and is a big deal. For example, everybody goes to the doctor. Everybody who goes to the doctor has to sign a consent for release of confidential information. Everybody knows that without written consent records cannot be sent electronically. Thus most people have some understanding that signed consents matter and are a big deal.
Another example: Many children get Early Start services. Early Start services are provided by California regional centers such as San Andreas Regional Center. Parents must sign written consent before assessment will start. No consent signed? Then no assessment and no services.
Many children who receive Early Start services improve considerably. Some children, however, make little or very slow progress in their social skills and how well they manage change.
Some of these slow developing children show substantial symptoms suggestive of autism. Early Start is required by law to contact the local public school and set up what is called a “transition” meeting.
Some children with autistic symptoms may be eligible for ongoing regional center services under the California Lanterman Act
Given the above, might think that before any assessment occurs for Lanterman eligibility for ongoing services that someone legally responsible must give written consent. That would logically follow. But, no.
Guess what! No written consent is obtained by SARC when children transition out of Early Start and may be eligible for ongoing services.
This is when CA Regional Center fails the sniff test.
San Andreas Regional Center SARC does not get written consent prior to assessing Early Start children who might be eligible for ongoing services.
This CA Regional Center only gets written consent one time — prior to assessment Early Start services.
So what? Does it matter that San Andreas Regional Center does not get written consent from Early Start children who might transition to ongoing services at age three?
Yes! No written consent translates into no current medical or school information will be obtained and thus not available forreview by the psychologist who assesses that child.
And, as a result a less than minimum report may be produced by CA Regional Centers based on limited or out of date records. Does this pass your sniff test? Nope.
This kind of behavior — where CA Regional Centers may meet the minimum requirements of the law but fails to implement best practice guide lines for the assessment of autism –should stop.
It is time that all CA regional centers meet the guidelines recommended by the California Department of Developmental Services (DDS) for the assessment of autism in young children. San Andreas Regional Cener knows what those guidelines are. It’s time that this CA Regional Center met those guidelines willingly.
It all starts with consent. Yes, consent is a big deal. And consent leads to obtaining and sharing current information about young children some of whom have substantial autistic symptoms. And some of these children can and should be eligible under autism for ongoing regional center services at the age of three.
Should the public and parents require regional centers to get consent prior to assessing for autism? Yes. Consent if a big deal for many reasons. And then act on that consent. Get up to date, current medical and school records after getting consent. Yes, consent is big deal and matters.
What you can do: email your California representatives and say it’s high time that Regional Centers meet best practice guidelines for assessment of autism. Contact your local public schools and ask them to pressure the Regional Centers to get parent consent and use up to date standardized tests when testing children for autism and other developmental disabilities. And contact the California Department of Developmental Services to put pressure on specific regional centers such as San Andreas so that they will more fully meet best practice guidelines.
Did you know that the former boss of San Andreas Regional Center is now the top boss of the agency (DDS) that writes the best practice guidelines? He is Santi Rodgers and his email address is available on the DDS site. Let Mr. Rodgers know that you want best practices used when children are assessed for autism.
CA Regional Center fails sniff test.
Yes, San Andreas Regional Center seems in the dark regarding autism. There are 20+ regional center services that provide services to substantially disabled persons in California diagnosed with autism and other developmental disorders.
But maybe SARC is just whistling in the dark – hoping that the criteria and the number of children getting diagnosed with autism will change soon.
For sure, San Andreas Regional Center keeps some families in the dark about autism.
For example, look what San Andreas Regional Center incorrectly wrote to one family when the agency denied services. The statement below paraphrases what the family received and is not an exact quote. The letter states:
Autistic Spectrum Disorder is diagnosed when the impairments in communication and social interactions are pervasive and sustained and not supported by ….
The letter referred to was signed by the San Andreas Regional Center specialist for autism. This person knows and sets policies.
Note the use of the word “communication” in the denial for services letter. What!! That is so misleading!
When making a diagnosis of autistic spectrum disorder the clinician must state whether the child with autism has or does not have communication difficulties. Yes – using the DSM5 criteria for autism — children can be diagnosed with autism and not have communication difficulties.
First of all, this denial letter is not accurate concerning the child’s possible “communication” deficits. The issue is social communication difficulties not whether this child can verbally communicate.
Secondly, this SARC denial letter leaves out any discussion whether the child has restricted, repetitive patterns of behavior or activities.
To summarize, SARC leaves out one main area [restricted, repetitive patterns of behavior or activities] and the other area [social communication and social interactions] is discussed incorrectly. This above quote is from the letter one family got from SARC as an explanation why their child has been denied California regional center services.
What SARC aka San Andreas Regional Center should have written:
Autism is diagnosed when there are “Persistent deficits in social communication and social interaction across multiple contexts…” and those social deficits are coupled with “restricted, repetitive patterns of behavior, interests, or activities as manifested by at least two of the following, currently or by history….
The diagnosis of autism changed dramatically when the Diagnostic and Statistical Manual Fourth Edition (DSM-4) was replaced by DSM5.
You decide. Is SARC in the dark, whistling in the dark or keeping some families in the dark about autism?
Diagnostihttp://www.icd9data.com/2012/Volume1/290-319/295-299/299/299.0.htmc Criteria for Autism Spectrum Disorder
DIAGNOSTIC CRITERIA FOR AUTISTIC SPECTRUM DISORDER
- Persistent deficits in social communication and social interaction across multiple contexts, as manifested by the following, currently or by history (examples are illustrative, not exhaustive):
- Deficits in social-emotional reciprocity, ranging, for example, from abnormal social approach and failure of normal back-and-forth conversation; to reduced sharing of interests, emotions, or affect; to failure to initiate or respond to social interactions.
- Deficits in nonverbal communicative behaviors used for social interaction, ranging, for example, from poorly integrated verbal and nonverbal communication; to abnormalities in eye contact and body language or deficits in understanding and use of gestures; to a total lack of facial expressions and non-verbal communication.
- Deficits in developing, maintaining, and understanding relationships, ranging, for example, from difficulties adjusting behavior to suit various social contexts; to difficulties in sharing imaginative play or in making friends; to absence of interest in peers.
- Restricted, repetitive patterns of behavior, interests, or activities as manifested by at least two of the following, currently or by history (examples are illustrative, not exhaustive):
- Stereotyped, or repetitive motor movements, use of objects, or speech (e.g. simple motor stereotypes, lining up toys or flipping objects, echolalia, idiosyncratic phrases).
- Insistence on sameness, inflexible adherence to routines, or ritualized patterns of verbal or nonverbal behavior (e.g. extreme distress at small changes, difficulties with transitions, rigid thinking patterns, greeting rituals, need to take same route or eat same food every day).
- Highly restricted, fixated interests that are abnormal in intensity or focus (e.g. strong attachment to or preoccupation with unusual objects, excessively circumscribed or perseverative interests).
- Hyper- or hyporeactivity to sensory input or unusual interest in sensory aspects of the environment (e.g. apparent indifference to pain/temperature, adverse response to specific sounds or textures, excessive smelling or touching of objects, visual fascination with lights or movement).
- Symptoms must be present in the early developmental period (but may not become fully manifest until social demands exceed limited capabilities, or may be masked by learned strategies in later life).
- Symptoms cause clinically significant impairment in social, occupational, or other important areas of current functioning.
- These disturbances are not better explained by intellectual disability (intellectual developmental disorder) or global developmental delay. Intellectual disability and autism spectrum disorder frequently co-occur; to make comorbid diagnoses of autism spectrum disorder and intellectual disability, social communication should be below that expected for general developmental level.
Look before you leap is good advice for all job seekers — including licensed Ph.D. clinical psychologists considering a job with San Andreas Regional Center located in northern California.
There are openings with San Andreas Regional Center: Two psychologist jobs are open as of Labor Day, 2015. One in Salinas and one in Watsonville, CA.
Back to basics: Are you a licensed California Ph.D. psychologist? Are you looking for a job?
Before you “leap” and take job as psychologist with San Andres Regional Center, consider the following:
Get in writing from your employer Executive Director Javier Zaldivar that staff (not you) will obtain current, up to date medical and educational records concerning prospective clients.
To do your work, which largely consists of writing psychological assessments of prospective clients applying under autism or intellectual disability, you need current up to date medical and school records. Having current records available for review assists you when testing clients and doing your psychological assessments.
Why does this matter?
DAY TO DAY RESPONSIBILITIES: If you don’t ahead of time get it in writing that San Andreas Regional Center staff and not you will get up to date medical and educational records — you may be asked to write assessment reports based strictly on the records available in the file. And those records can be quite old. And that can be a drag.
What does that mean?
If you went to any MD you’d expect them to make a diagnosis based on the most current, up to date information, correct? You want the most accurate diagnosis, right? Well, you as a licensed Ph.D. psychologist need current, up to date medical and school records on which to base your diagnosis and your recommendation whether the applicant is eligible for regional center services.
As licensed Ph.D. psychologists are mandated to meet American Psychological Association ethical standards (code 9.0), it’s important that regional center staff obtain current, up to date school and medical records which will allow you to meet your legal and ethical duties.
WILL THIS JOB CHALLENGE YOU TO GROW? See separate posts on whether a job as psychologist with San Andreas Regional Center will allow you to build your skills. During the interview, be sure to ask about career paths and how psychologists assist the agency in general ways.
For example, how to psychologists contribute to the goals and objectives of the agency as set by the Executive Team for San Andreas Regional Center? The Director in charge of the Executive Team is Javier Zaldivar. He has offices at Campbell 408 341 3476 and Gilroy 408 8462028.
San Andreas Regional Center describes itself as a community based, private non-profit corporation funded by the state of Calfornia. It is one of 24 organizations in California which provide services to persons with disabilities including those with autism, intellectual disability and those who require treatment/ services similar to persons with intellectual disability.
For general information including about employment visit http://www.sanandreasregional.org
Questions? Look before you leap when seeking a job and your landing will be more rewarding. contact http://www.freedomOK.net
There’s a dog in my bed.
A mother whose child was so badly behaved she convinced herself that he was autistic. Then the mother found out the real reason for the child’s behaviors: the family dog.
Three-year-old Billy was prone to violent temper tantrums. He even hurled a bike at his mother Robyn on one occasion.
Checking things out, sleep expert Debs Sugden observed video footage which showed the family dog and cat kicking Billy out of his own bed.
The sleep expert explained that Billy’s broken sleep had led to him suffering from ‘delayed sleep phase syndrome’ . This is a medical disorder where sleep is delayed two or more hours past the conventional bedtime.
Firenze Sage: Well the smart little bugger sure fooled them this time.
Parents manipulate process for autism services hoisted on their own petard?
Here’s a list of what NOT to do when seeking services for a child with substantial delays such as autism or intellectual disability.
And if you do the following – don’t expect the process to go smoothly!
That the parents are both teacher/ educators which is a profession prone to “know it all” types may have played a role in what happened and that these parents today are still clueless.
The family first went to an M.D. who made recommendations that a handful of evaluations be done & then to come back to discuss the results. The parents did not follow through on any of the MD’s recommendations concerning assessment.
Instead, the parents went to a CA agency that provides services to children with developmental disabilities. There, the parents:
- Told the agency exactly what diagnosis to give their child. And what diagnosis was not acceptable.
- Spent most of the first interview saying NO when asked for additional info/ records.
- Refused permission for the agency to observe the child with same age peers at school.
- Created a pseudo history of events via email trail.
- Provided false information because their advocate told them to do so.
Overall, these parents/ educators tried to manipulate the process from start to finish. What happened?
Hoist by they own petard! One thing lead to another and the end result was that the parents did not get the diagnosis they expected. So they they tried to change the diagnosis through a complaint process. And that did not work.
The parents feel “stuck” with a diagnosis they do not agree with. Shown the support for the diagnosis they still want to reject it. And the parents state that they feel that the process was a painful one. Well, the actions they took (see above bullets) resulted in effects they did not expect.
It is hard for parents to accept that their child not only meets criteria for autism but also for intellectual disability.
What about the child? The 13 year old substantially delayed child still does not have an Individual Education Plan (IEP). The parents, both educators, say that they don’t want their child harmed through special education categorization or certain medical diagnosis which they don’t accept.
In my view, just as water seeks its own level, many children with disabilities are more comfortable educated with children who share similar abilities. I hope that this child does get an IEP and can have connections with children who share similar abilities and interests.
Cameron Jackson, Ph.D. DrCameronJackson@gmail.com
Dr Jackson is a psychologist with a private practice in Santa Cruz, CA 831 688 6002
How to celebrate milestones of children with developmental delays?
Children with developmental delays frequently do not graduate from high school.
One private school in Santa Cruz, CA which serves largely children with autism is the Bay School. Per report by a parent, there is no graduation ceremony at the Bay School when students finish their Senior year.
So, what to do if a student with developmental delays wants to celebrate completion of high school but there is no ceremony or ritual?
Clearly, here’s an opportunity to innovate.
Make up a ceremony that will be meaningful for your child with delays. Each child is unique so the best person to decide are the parents and family and friends who support this young person leaving high school behind.
Do you know a child with developmental delays? Find out their birthday and the date that they will formally finish their Senior year.
Send a card and/or a small gift. Make a phone call. And you might include a fresh flower or two for the parent(s) who has taken this long journey with their child soon to be a grown up. Below is a post by an MD on the same topic.
licensed psychologist DrCameronJackson@gmail.com
Politics to making a diagnosis of Autism and/or Intellectual Dsability? Yes!!
Times have changed. In the last 5+ years, a diagnosis of Autism is sought after as a diagnosis particularly if the other diagnosis to rule in or out is Intellectual Disability formerly Mental Retardation.
See the post below wherein the MD is haunted by a diagnosis of mild Autism which she made 20 years ago. Perhaps if that MD had suggested what treatments could be offered for mild Autism and typical progress made through social skills training, then perhaps the parents might have returned on their own for follow up appointments.
Twenty years ago we did not have internet. Now, it’s possible to get e-mails and immediately set up a connection with parents so as to address their concerns.
Recently, I diagnosed a 13 year old boy with Intellectual Disability, Unspecified. My guess is that he has Moderate ID, i.e., an I.Q around 40-50. When the parents were interviewed they said that they wanted a diagnosis of Autism. Later, at another meeting they entirely rejected a diagnosis of Intellectual Disability. Because Intellectual Disability affects all areas of general functioning whereas Autism is more limited it will not take 20 years to see which diagnosis is more accurate. The politics of this diagnosis still reverberates. Parents want any mention of Intellectual Disability stricken from our records. Politics involved? Yes!!
Haunted by an autism diagnosis: A sense of closure after 20 years
It was my first parent conference ever. I had watched an experienced social worker give a series of diagnoses to a family and now—following the “see one, do one” model—it would be my turn. Things started off well. When I reviewed the cognitive and language data, the parents were attentive and the mother’s nods indicated that the information was consistent with her own thoughts about her son. When I moved on to discuss the constellation of behaviors that included poor eye contact, conversational weaknesses and restricted interests and suggested that they might be manifestations of mild autism, the mother vehemently stated her disagreement. She said that she “had seen autism and this was not it.”
The family never returned for the scheduled follow-up appointments. I had no information about what had become of the boy. But I thought of him over the years; he haunted me. I went on to develop a clinical and research passion for autism and to head the RELATE program for early diagnosis and treatment of autism here at Einstein. The field of autism changed in the background, with the concept of the spectrum of autism becoming widely accepted. But I wondered through the years if, in my clinical debut, I had jumped the diagnostic gun. Had I given these parents an incorrect diagnosis for their son—one with lifelong implications? The case haunted me as I wondered whatever became of the boy and his family.
I looked back at the old chart and the release of records form and found that there was another sticky note affixed to the record. It said that the patient was currently being seen on the adult unit, and those recent records were also attached. I excitedly flipped through the pages to find the new report. The record began: “The client is a 29-year-old male who reports that he was diagnosed with mild autism as a child, that he completed high school, went on to college but could not manage it and dropped out and has been unable to hold a job since due to social difficulties. He comes seeking treatment.” The report goes on to describe his poor eye contact, trouble with topic maintenance and trouble understanding the examiner’s perspective. It was clear, based on the recent evaluation and current attitudes and criteria, that the patient has an autism spectrum disorder.
From a selfish perspective, this follow-up—more than 20 years later—gave me a sense of closure. The long-ago diagnosis had been accepted, at least by the young man himself, and he continues to show signs of this generally lifelong diagnosis. But I ached to know the course his family had taken in accepting the diagnosis and what help he had received along the way. Could he have done better and succeeded in his education and work activities if he had received more specialized help, such as social skills training—readily available these days but hard to find in the 90s? I don’t think the case will haunt me in the same way it had. Maybe in some new ways, though, it will.
Lisa Shulman is a neurodevelopmental pediatrician and director, infant and toddler services, Children’s Evaluation and Rehabilitation Center (CERC), Albert Einstein College of Medicine. She blogs at The Doctor’s Tablet.