Could Your Child Have Autism?

(NAPSI)-Once considered a rare disorder, autism is now diagnosed in one in every 150 children, with boys nearly four times more likely than girls to receive a diagnosis. For parents who believe their child may have autism, it is important to ask questions, get answers and seek appropriate treatment.

What Is Autism?

Autism is a complex developmental disability that typically appears during the first three years of life and affects a person’s ability to communicate and interact with others. Autism is defined by a certain set of behaviors and is a “spectrum disorder,” which means that it manifests itself differently for every individual, varying in the severity and type of symptoms.


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While there are strong and consistent commonalities, there is no single behavior that is always typical of autism and no behavior that would automatically exclude an individual from receiving a diagnosis.

A basic rule for treating autism is the earlier the intervention, the better. Getting the right help at the earliest stage of life can help a child gain the skills he or she needs to be successful. If you’re worried your child may have autism--or feel something just isn’t quite right--you should:

1. First and foremost, follow your instincts. Don’t assume that your child will catch up.

2. Share your concerns with your pediatrician. Consider seeing a doctor who is familiar with autism. The American Academy of Pediatrics offers an online pediatrician referral service, searchable by specialty and location.

3. Utilize early intervention services available in every state. The government provides free services for children with disabilities. Consult the National Dissemination Center for Children with Disabilities at www.nichcy.org and your local early intervention lead agency at www.nectac.org/search/mapfinder.asp. The lead agency is required to provide a timely evaluation, typically within 45 days of being contacted. If your child is experiencing significant developmental delays in one or more of the following areas, you’re eligible for free early intervention services: cognitive, physical, communication, social, emotional or adaptive skills.

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4. Get a diagnosis. Autism can be diagnosed as early as 18 months old. Many children are diagnosed before age 5, although many children get misdiagnosed or not diagnosed until later in life.

5. Seek help from community service and treatment providers like Easter Seals. Start by visiting autism.easterseals.com.

To learn more about autism, find services at an Easter Seals near you or help Easter Seals change the lives of people living with autism by becoming a donor or volunteer, visit autism.easterseals.com.

Early intervention, diagnosis and treatment are crucial for children with autism.

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Why Youngsters With Autistic Spectrum Disorders Remain Underrepresented in Special Education

By Safran, Stephen P

Although numerous investigations have examined the prevalence of autistic spectrum disorders (ASD) in the general population, have special education identification rates of autism kept pace? From the 1992-1993 to 2001-2002 school years, U.S. Department of Education data indicate an increase from 15,580 to 97,904 students with autism, an expansion of 528% and an annual average growth of 22.69%. The number of students with autism per 10,000 public school enrollees has correspondingly increased from 3.64 to 20.53 during this period. Despite this expansion, there remains a substantial gap between students identified with autism under the Individuals With Disabilities Education Act and current prevalence estimates of ASD, in large part due to underidentification of youngsters on the higher functioning end of the spectrum. Keywords: autism; autistic spectrum disorders; identification; special education

In recent years, there has been a dramatic increase in the number of individuals clinically or medically diagnosed with autism and related conditions, often referred to as autistic spectrum disorders (ASD) or pervasive developmental disorders (PDD; Charman, 2002; Fombonne, 2003b). Although explanations of this estimated threefold to fourfold increase over the past 30 years (Fombonne, 2003b) are preliminary, changes in diagnostic criteria; heightened awareness among the public, parents, and professionals; recognition that ASD can be dual-diagnosed with other conditions; as well as enhanced service access are often cited (Wing & Potter, 2002). Whereas numerous studies investigate the prevalence of ASD in the general population (Croen, Grether, Hoogstrate, & Selvin, 2002; Fombonne, 2003a), there has been scant attention concerning the number of students with autism declared eligible for special education services (Sturmey & James, 2001). (In this article, ASD or PDD is used as the broader medical/clinical term, whereas autism refers to the disability category under the Individuals With Disabilities Education Act [IDEA].) Furthermore, whereas the prevalence rate of ASD in the general population has been dramatically expanding, have identification rates kept pace in the public schools?




To address this issue, this article examines trends in the number of students identified with autism since the U.S. Department of Education first required states to report these data for school year 1992-1993. What has been the rate of increase in the number of students identified? How do current prevalence estimates of ASD in the general population compare with special education classification rates of autism? To what extent are pupils with ASD potentially being underidentified for special education services under the category of autism?

Contrasting Clinical Diagnosis and Special Educational Identification

The initial step in identifying any clinical or special education population involves defining the disorder or disability. The concept of autism has undergone a significant transformation since Kanner's seminal 1943 paper (Tidmarsh & Volkmar, 2003). Earlier considered a rare condition almost exclusively associated with mental retardation, research during the late 1980s and the 1990s modified this view (Wing & Potter, 2002). Within the clinical and research communities, as the notion of a "spectrum" of autistic disorders became more accepted, studies on the prevalence of ASD began to generate substantially larger numbers (Tidmarsh & Volkmar, 2003; Wing & Potter, 2002).

The educational definition of autism under IDEA (Individuals With Disabilities Act Regulations, 1999) has both similarities and differences when compared with the Diagnostic and Statistical Manual of Mental Disorders-Fourth Edition, Text Revision (DSM-IV-TR; American Psychiatric Association, 2000):

Autism means a developmental disability significantly affecting verbal and nonverbal communication and social interaction, generally evident before age 3, that adversely affects a child's educational performance. Other characteristics often associated with autism are in repetitive activities and stereotyped movements, resistance to environmental change or change in daily routines, and unusual responses to sensory experiences. The term does not apply if a child's educational performance is adversely affected primarily because the child has an emotional disturbance, as defined by IDEA criterion. A child who manifests the characteristics of "autism" after age three could be diagnosed as having "autism" if the criteria in the preceding paragraph are met. (Individuals With Disabilities Act Regulations, 1999)

In contrasting the educational and clinical definitions, Dahl (2003) emphasized that both include deficits in social interaction, in addition to verbal and nonverbal communication. The IDEA definition, however, requires that these characteristics must have a negative impact on educational performance. Moreover, whereas onset can be expected by age 3, this does not preclude diagnosis or development of autistic tendencies at a later age. For example, research hi the United Kingdom indicates that children with Asperger syndrome are on the average identified at a later age (11.13) compared with youngsters with autistic disorder (5.49; Howlin & Asgharian, 1999). Therefore, youngsters on the higher functioning end of the spectrum, whose symptoms often are masked during early childhood (Safran, 2005), can be identified for special education services at an older age under the category of autism.




The clinician and special educator do not use the same diagnostic or identification criteria (Dahl, 2003). Overall, the IDEA definition of autism is considered broad and flexible enough to include students who exhibit a range of behaviors that are included within all ASD subtypes (Fogt, Miller, & Zirkel, 2003; Shriver, Alien, & Mathews, 1999). However, many individuals may not receive both an educational and clinical diagnosis. For instance, a student can be found eligible for special education services without a clinical diagnosis of any ASD subtype, or a clinically diagnosed youngster may not receive special education services. Furthermore, a child with a clinical diagnosis of any ASD condition can be identified under other special education categories, often mental retardation or other health impaired (Dahl, 2003). However, the actual number of children with ASD receiving special education services under all categories, including autism, has yet to be systematically examined (see YearginAllsopp et al. [2003] and Bertrand et al. [2001] for preliminary data). Furthermore, although the frequency of IDEA due process hearings and legal decisions encompassing autism have increased, only 13 of the 290 (4.5%) identified by Fogt et al. (2003) involved differences over eligibility. This evidence suggests that the educational definition of autism is operationally acceptable to both the legal and advocacy communities.

Prevalence Estimates of Autistic Spectrum Disorders

What is the prevalence of children with ASD? Whereas this appears to be a straightforward question, an accurate answer challenges researchers and epidemiologists throughout the world (Baker, 2002; Chakrabati & Fombonne, 2001; Scott, Baron-Cohen, Bolton, & Brayne, 2002). Differences in prevalence estimates across studies can result from methodological variability, including differences in definition, geographic area, and/or strategies used to identify/ diagnose individuals (Fombonne, 2003a). In the United States there have been three widely cited studies of the prevalence of ASD: the California Developmental Services investigation (California Department of Developmental Disabilities, 1999; Croen, Grether, Hoogstrate, et al., 2002; Croen, Grether, & Selvin, 2002); the Centers for Disease Control and Prevention's (CDC's) Atlanta, Georgia, examination (Yeargin-Allsopp et al., 2003), and the CDC's Brick Township, New Jersey, inquiry (Bertrand et al., 2001). Each of these investigations, however, used widely varying methodological approaches, and the accuracy of their results has been questioned (Fombonne, 2003a, 2003b).

Arguably the most current and accurate prevalence estimates of combined ASDs can be derived from Fombonne's (2003a) review of epideniiological studies. Analyzing international research, he suggested a conservative estimate of 27.5 per 10,000 but supported a more realistic number of 60.0 per 10,000, a figure corroborated by Charman (2002). Based on U.S. census data from 2000, and his conservative estimate, Fombonne (2003a) presented his approximation for the number of individuals under 20 with all subtypes of ASD. To expand on his figures, I also include in Table 1 his higher rate of 60.0 per 10,000. According to these estimates, there are between 221,301 and 482,840 individuals with all types of ASD under the age of 20 based on year 2000 census data.




Examining Special Education Identification Trends

To what degree are youngsters with ASD potentially underrepresented in special education under the category of autism compared with current prevalence estimates? To address this question, my first step was to identify trends related to the number of students identified with autism under IDEA. These data are based on annual reports of the implementation of the Individuals With Disabilities Education Improvement Act (previously IDEA and PL 94- 142), beginning with the 1991-1992 school year (U.S. Department of Education, 1992) until the most recently released head counts for the 2001-2002 school year (U.S. Department of Education, 2002). Statistics were collected using electronic versions of these reports starting in 1995, with earlier hardcopy editions utilized between 1992 (U.S. Department of Education, 1992) and 1994. By law, all states are required to yearly submit the number of students identified by special education category. Although autism identification rates were first collected in 1991-1992, required reporting by the states began in 1992-1993 (U.S. Department of Education, 2002). As a result, only figures starting from 1992-1993 are reported. In addition, the most recent report available (U.S. Department of Education, 2002) also incorporates retrospective identification data derived from previous editions. In instances where a discrepancy exists between earlier reported figures and those most recently released, more recent numbers are included. Enrollment statistics pertaining to the entire public school population were retrieved from Department of Education online sources rounded to the nearest thousand (National Center for Education Statistics, 2004). * How many students have been identified under the category of autism under IDEA for each school year between 1992-1993 and 2001-2002? What has been the annual rate of increase?

The number of students ages 3 to 22 identified with autism reported by the federal government has increased from 15,580 in 1992- 1993 to 97,904 in 2001-2002, an increase of some 528% (see Figure 1). Annual increases from 1993-1994 to 2001-2002 varied from a low of 18.22% in 1996-1997 to a high of 27.15% in 1995-1996, with an average annual increase of 22.69% (see Figure 2).

* What percentage of all students with disabilities under IDEA have been identified with autism between 1992-1993 and 2001-2002?

To analyze the growth of the number of students with autism relative to all pupils with disabilities, percentages were calculated. As illustrated in Figure 3, this number has grown each successive year, from a low of 0.34% in 1992-1993 to a high of 1.66% in 2001-2002.

* What has been the rate of students identified with autism per 10,000 students enrolled in public schools between 1992-1993 and 2001-2002? How does this compare with current prevalence estimates of ASD in the general population?

To make a more meaningful comparison between children identified with autism in the public schools and prevalence estimates derived from epidemiological studies, the number of students with autism was compared with total national public school enrollment. The number of students varied from a low of 3.64 per 10,000 in 1992-1993 to a high of 20.53 in 2001-2002 (see Figure 4). This latter figure, though representing a substantial growth rate, remains approximately 6.97 per 10,000 below Fombonne's (2003a) conservative estimate of 27.5 per 10,000, or approximately 33,227 students based on a total public school enrollment of 47,672,000 for Fall 2001 (National Center for Education Statistics, 2004) . Furthermore, the IDEA figures are approximately 39.47 per 10,000 below his more realistic number of 60.0 per 10,000, or an estimated 188,161 students.

* What were the number of students identified with autism at each age between 3 and 22 during the most recent school year?

As illustrated in Figure 5, the largest number of students identified with autism under IDEA per age group are 9-year-olds (n = 11,641), followed by ages 8 (n = 11,379) and 7 (n = 11,121). As can be perused from these numbers, there appears to be a "plateau" from ages 6 to 9, followed by a consistent decrease starting at age 10.

Why Youngsters With Autism Remain Underidentified in Special Education

Whereas prevalence estimates of individuals with ASD has dramatically expanded (Charman, 2002; Fombonne, 2003a), has the number of students identified with autism under IDEA kept pace? On the surface, comparing 1992-1993 to 2001-2002 data from the U.S. Department of Education (1992, 2002) reflect several noteworthy accomplishments: a 528% increase in the number of students identified (from 15,580 to 97,904), an expansion in the student classification rate (from 3.64 to 20.53 per 10,000 public school pupils), plus an average annual growth rate of 22.69%. Despite these extensive efforts, it is my view that youngsters with ASD remain underrepresented in special education.

Whereas estimating special education identification rates is a haphazard business, whole population prevalence estimates can provide insights into future classification needs. If the number of students identified with autism is equivalent to current ASD prevalence estimates, somewhere between 27.5 and 60.0 per 10,000 (Bertrand et al., 2001; Fombonne, 2003a), and we combine this with a Fall 2001 public school enrollment of 47,672,000 (National Center for Education Statistics, 2004), the number of students with autism can be projected at between 131,098 and 286,032, or a required increase of between 34% to 192% from the 2001-2002 identification count of 97,904. If, and this is a big if, prevalence estimates of ASD can serve as a general guide for future growth, there potentially remain tens of thousands of public school students yet to be identified with autism according to the most recent federal figures available at time of writing. If a near-term annual growth rate of 20% is maintained, plus applying Fombonne's (2003a) best estimate of 60.0 per 10,000 individuals (286,032 students with autism), this identification rate would be reached during the 2007- 2008 school year. Realistically, a 20%-plus annual growth rate cannot be sustained indefinitely as funding pressures spiral due to budget restraints.



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Whereas I believe that there is a strong case for identifying greater numbers of students with autism, this position is arguable for several reasons. First, although actual figures are unknown, many children with ASD are identified in other special education disability categories such as mental retardation or other health impaired (Bertrand et al., 2001; Yeargin-Allsopp et al., 2003), thereby reducing the number classified with autism. second, prevalence estimates derived from epidemiological research are just that, estimates of population size. These figures differ from "administrative" head counts such as special education identification numbers where funding may be the dominant factor in determining population size. Third, the diagnostic criteria for all subtypes of ASD and the special education definition of autism, though overlapping, differ and will invariably result in different eligibility and diagnostic decisions.




Where on the autistic spectrum can future increases in identification be projected to emanate from? Although exact numbers are currently unavailable, it is probable that professionals in early intervention and special education have already identified the vast majority of children on the lower end of the spectrum. These youngsters are diagnosed at an earlier age, and their symptoms are more visible to families and professionals (Howlin & Asgharian, 1999). As investigations in the United States corroborate (Bertrand et al., 2001 ; Yeargin-Allsopp et al., 2003), higher functioning youngsters with ASD, such as those diagnosed with Asperger syndrome, whose symptoms are often more subtle and may be masked due to average to above-average intellectual functioning, academic achievement, and language abilities, are either identified at an later age or not at all (Howlin & Asgharian, 1999; Safran, 2005). Although progress has been made, there remain many more youngsters on the higher end who remain unidentified. For these youngsters, whose social skills deficits, unusual mannerisms, rigidity, and lack of empathy are often wrongfully interpreted as purposefully rude and inappropriate, life challenges are no less real (Safran, 2001). It is with this group of children that future special education identification resources must be focused.

References

American Psychiatric Association. (2000). Diagnostic and statistical manual of mental disorders (4th ed., text revision). Washington, DC: Author.

Baker, H. C. (2002). A comparison of autistic spectrum disorder referrals 1997 and 1989. Journal of Autism and Developmental Disorders, 32, 121-125.

Bertrand, J., Mars, A., Boyle, C., Bove, F, Yeargin-Allsopp, M., & Decloufe, P. (2001). Prevalence of autism in a United States population: The Brick Township New Jersey, investigation. Pediatrics, 108, 1155-1161.

California Department of Developmental Disabilities. (1999). Changes in the population of persons with autism and pervasive developmental disorders in California's Developmental Services System: 1987 though 1999. A report to the legislature. Sacramento: California Health and Human Services Agency.

Chakrabati, S., & Fombonne, E. (2001). Pervasive developmental disorders in preschool children. Journal of the American Medical Association, 285, 3093-3099.

Charman, T. (2002). The prevalence of autism spectrum disorders: Recent evidence and future challenges. European Child & Adolescent Psychiatry, 11, 249-256.

Croen, L. A., Grether, J. K., Hoogstrate, J., & Selvin, S. (2002). The changing prevalence of autism in California. Journal of Autism & Developmental Disorders, 32, 207-215.

Croen, Lisa A., Grether, J. K., & Selvin, S. (2002). Descriptive epidemiology of autism in a California population: Who is at risk? Journal of Autism & Developmental Disorders, 32, 217-224.

Dahl, K. B. (2003). The clinical and educational systems: Differences and similarities. Focus on Autism and Other Developmental Disabilities, 18, 238-246.

Fogt, J. B., Miller, D. N., & Zirkel, P. A. (2003). Defining autism: Professional best practices and published case law. Journal of School Psychology, 41, 201-216. Fombonne, E. (2003a). Epidemiological surveys of autism and other pervasive developmental disorders: An update. Journal of Autism & Developmental Disorders, 33, 365-382.

Fombonne, E. (2003b). The prevalence of autism. Journal of the American Medical Association, 289, 87-89.

Howlin, P., & Asgharian, A. (1999). The diagnosis of autism and Asperger syndrome: Findings from a survey of 770 families. Developmental Medicine and Child Neurology, 41, 834-839.

Individuals With Disability Act Regulations. 34 C.F.R. 300.7 (1999).

National Center for Education Statistics. (2004). Digest of education statistics, 2004. Washington, DC: U.S. Department of Education. Retrieved September 25, 2006, from http:// www.nces.ed.gov/programs/digest/d04/

Safran, S. P. (2001). Asperger syndrome: The emerging challenge to special education. Exceptional Children, 67, 151-160.

Safran, S. P. (2005). Diagnosis. In L. J. Baker & L. A. Welkowitz (Eds.), Asperger's syndrome: Intervening in schools, clinics, and communities (pp. 43-61). Mahwah, NJ: Lawrence Erlbaum.

Scott, F. J., Baron-Cohen, S., Bolton, P., & Brayne, C. (2002). Brief report: Prevalence of autism spectrum conditions in children aged 5-11 years in Cambridgeshire, UK. Autism, 6, 231-237.

Shriver, M. D., Alien, K. D., & Mathews, J. R. (1999). Effective assessment of the shared and unique characteristics of children with autism. School Psychology Review, 28, 538-558.

Sturmey, P., & James, V. (2001). Administrative prevalence of autism in the Texas school system. Journal of the American Academy of Child & Adolescent Psychiatry, 40, 621.

Tidmarsh, L., & Volkmar, F. R. (2003). Diagnosis and epidemiology of autism spectrum disorders. Canadian Journal of Psychiatry, 48, 517-525.

U.S. Department of Education. (1992). To assure the free appropriate public education of all handicapped children with disabilities: Fourteenth annual report to Congress on the implementation of the Education of All Handicapped Children Act (Public Law 94-142). Washington, DC: Author.

U.S. Department of Education. (2002). To assure the free appropriate public education of all children with disabilities: Twenty-fourth annual report to Congress on the implementation of the Individuals With Disabilities Act (IDEA). Washington, DC: Author. Retrieved September 26,2006, from http://www.ed.gov/about/reports/ annual/otherplanrpts.html

Wing, L., & Potter, P. (2002). The epidemiology of autistic spectrum disorders: Is the prevalence rising? Mental Retardation and Developmental Disabilities Research Review, 8,151-161.

Yeargin-Allsopp, M., Rice, C., Karapurkar, T, Doernberg, N., Boyle, C., & Murphy, C. (2003). Prevalence of autism in a US metropolitan area. Journal of the American Medical Association, 289, 49-55.

Stephen P. Safran

Ohio University, Athens

Author's Note: This research was completed during the author's faculty leave at Ohio University during academic year 2005-2006. Please address correspondence to Stephen Safran, PhD, Ohio University, Dept. of Teacher Education, College of Education, McCracken Hall, Athens, OH 45701; e-mail: safran@ohio.edu.

Stephen P. Safran, PhD, is a professor of special education at Ohio University, Athens. He received his PhD at the University of Virginia in special education. His current research, presentation, and training interests include school-wide positive behavior supports and autistic spectrum disorders/Asperger syndrome.

U-M center gets $7 million to study autism in infants

A $7-million grant from the National Institutes of Health will help researchers at the University of Michigan Autism and Communication Disorders Center focus more closely on early intervention for the youngest autistic children -- those up to about 18 months old.

Even as babies, most people search others' faces to help assess situations. An autistic child may not, said Catherine Lord, UMACC's director.

Lord said she believes infants can be encouraged to seek out such feedback, cementing a routine that could help as they learn to navigate the world.

"The idea is can you prevent some things from going awry if you catch them early enough?" Lord said.

It's the third such grant in recent months that will help U-M and Wayne State University study autism -- its origins, a possible treatment and the impact of early intervention.


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The grant adds to about $5 million of NIH funds recently awarded to the UMACC for similar early intervention, Lord said.

Those with autism have difficulty with social skills and communication and may have repetitive behaviors like hand-flapping. The most severe cases require lifelong support; other autistic people are high-functioning.

No one has pinpointed a cause or cure.

But the right intervention can lead to results, said Stephanie Harlan, director of the Autism Connections program at the Judson Center, a nonprofit, human service agency with several locations in southeastern Michigan. Her son was diagnosed with the disorder at 2 1/2 years old. He has been in occupational therapy and social skills therapy, takes medication and is on a special diet.

Now 9, he no longer meets the criteria for autism, Harlan said.

"Everyone has different theories of why it has worked for some kids and not for others," she said of intervention. "All I know is we got the right combination of treatments, and it has worked."





At WSU, a nearly $5.8-million NIH grant will fund research toward a possible treatment.

Researcher Diane Chugani, a professor of pediatrics and radiology at the WSU School of Medicine, says autistic children may not produce enough serotonin, a neurotransmitter that helps a young brain develop.

Chugani said autistic children were treated with a drug similar to serotonin in an earlier study she did, and many improved their social interactions and reduced repetitive motor actions.

Dr. Eileen Donovan, medical director at the Detroit Institute for Children, which serves disabled children, said the grants will greatly increase the odds of unraveling the mysteries about the disorder. "This is somewhat an uncharted area," she said.

BY ROBIN ERB •Detroit FREE PRESS EDUCATION WRITER • June 7, 2008

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Autism program helps parents, officials and children to deal with emergency situations

DOVER, NH — It's a scenario that every parent of child with autism dreads.

Suddenly you're involved in some sort of accident, and your child is alone and confused and could be easily startled by the presence of emergency personnel.

It's a scenario that many in the community with autistic children are beginning to prepare for.

Six area families, including four from Dover, signed up for the Easter Seals Autism Awareness 911 program during an open house last Thursday night outside of the McConnell Center. The program allows for parents to fill out a profile of their child, which is then forwarded to the city or local dispatch centers so those homes with autistic children can be flagged for police, fire and emergency personnel.

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Information also is forwarded to New Hampshire 911 to flag the phone number.

During Thursday's event, several autistic children had a chance to interact with firefighters and police officers, along with some of their equipment and apparatus.

Dover resident Marie Berman said the event was the perfect opportunity to familiarize her 6-year-old daughter with firefighters and their equipment.

"It's good for her to learn that if she is in danger, these are the people that can help," Berman said.

Berman's daughter has sensory issues and gets scared by loud noises and crowded places. Berman said it's good for her to be around the fire trucks and police cars, so she could hear the sirens.

"It helps her to not be afraid," Berman said.

Elizabeth Webster, who founded the program with her partner Dawn Brady, said the two have worked with police in Manchester and Concord. They hope to spread the program throughout the state.

The next autism event is scheduled for Saturday, Sept. 13 from 3:30 p.m. to 5:30 p.m. at the McConnell Center.

Article published Jun 6, 2008 - Fosters.com

The great autism rip-off ... How a huge industry feeds on parents desperate to cure their children

By Barney Calman

There is little hope given to parents of children with autism. Mainstream medicine offers no explanation for the cause of this life-long learning disability, thought to affect one in 100, and there are no effective treatments.


Perhaps the most cruel characteristic of the condition, which impairs communication development and ability to relate to others, is that children often develop normally until about two years of age, when they suddenly 'regress', becoming mute, withdrawn, refusing to make eye contact and prone to tantrums.


Many never take part in mainstream education and some require full-time care, even as adults.



In the absence of solutions, desperate parents are increasingly turning to the world of alternative medicine in their search for a cure.

In this burgeoning market, private doctors and clinics have sprung up across the UK claiming they can treat or even 'reverse' the disorder.


Recent research published in the Journal Of Developmental And Behavioural
Paediatrics found that a third of parents of autistic children have tried unproven 'alternative' treatments.


Worryingly, the study claims one in ten has used what the experts class as 'a potentially harmful approach'.


Jacqui Jackson, 43, lectures around the country on Autistic Spectrum Disorder (ASD).


The Blackpool-based mother of seven, five of whom suffer from ASD, knows all too well the powerful allure of the promised 'cure'.


After the Jackson family - including Matthew, 24, Rachel, 22, Sarah, 20, Luke, 19, Anna, 18, Joe, 15, and Ben, 11 - appeared in the 2003 BBC documentary My Family And Autism - dramatised in the film Magnificent 7, in which actress Helena Bonham Carter played a character based on Jacqui - they were inundated with calls from alternative practitioners.


'You are so desperate in the early stages, you'll try anything,' says Jacqui.


'I bought enzymes and supplements from America, which cost a fortune. I even paid thousands for a special mattress, blankets and pillows with magnets sewn into them that the sales people promised would do wonders but, of course, didn't work.


'Autism is seen by some people as big business.


'I meet parents who want a cure and spend money in the hope they'll have a normal child. I try to warn them that there is no evidence any of these things work, but they'll often go ahead.'

Jacqui with her four sons who all suffer from autism - from left, Matthew, Luke, Ben and Joe

To investigate Jacqui's claims and to discover exactly what is being offered to parents, I visited five practitioners of 'biomedical' autism therapies posing as a parent of a three-year-old boy diagnosed with ASD.


In each case my story - a 'typical' case of an autistic child, developed with the help of medical experts - was the same: My 'son' Archie was born on September 15, 2004, after an uncomplicated pregnancy and birth.


He had all the usual baby vaccines, including the MMR at 14 months, and developed normally until around 18 months old when he became withdrawn and stopped speaking, refusing to make eye contact. Our GP referred us to a specialist who diagnosed him with ASD.

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I claimed to be seeking help from more 'forward-thinking' doctors.


During my investigation, I was recommended expensive tests, vitamin supplements and special diets, ointments, suppositories and injections to 'flush out toxic heavy metals', bizarre-sounding high-pressure oxygen chambers and intravenous infusions of hormones - and told in each case that they could bring about a complete recovery from autism.


Yet medical experts say there is no evidence to support their claims, and in fact many of the treatments I was offered were potentially harmful, and even possibly fatal.


The experience left me disturbed at the lack of regulation surrounding these practices.

The cost of some treatment programmes ran into thousands. Yet some clinics claimed to have six-month waiting lists.


This week, new legislation aimed at protecting consumers from 'rogue traders' came into force, prohibiting businesses from making 'false claims' that a product is able to cure illness.

Although the practitioners stopped short of saying they could 'cure' autism, each described to me instances of young patients who had been transformed by their treatments and were able to lead totally normal lives and participate fully in mainstream education.


The doctors I visited are all linked to the highly controversial US-based Defeat Autism Now! (DAN!) group - a collection of fringe academics and doctors.


DAN! practitioners often recommend chelation therapy - injections intended to detoxify the blood of heavy metals, the treatment that led to the death of autistic five-year-old Abubakar Nadama, a doctor's son from Batheaston, Somerset, in 2005.


By speaking to autism experts and GPs, I was able to identify five key players in the DAN! movement in the UK and Ireland.


My first encounter was with Dr David O'Connell, a former GP. His clinic is promoted by the Autism File, a magazine that supports the DAN! approach.


Within moments of our first telephone conversation he tells me what, no doubt, every parent of a child with autism longs to hear: 'Your son could recover.'


O'Connell claims education programmes for autistic children are like 'teaching a dog tricks' and instead offers injections of 'a harmless, naturally produced hormone' called 'secretin' which he claims can bring about a 'reversal' of autistic symptoms.


'Two thirds will improve by more than 30 per cent,' he states. 'Any gains will be permanent.'


So, why have I never been told about this treatment? 'Because doctors in this country are in the dark ages,' comes the reply.


During our appointment, Dr O'Connell - tall, balding and tanned, who I guess to be in his early 60s - says: 'Nine years ago, I gave the first injection of secretin to a child. There was a 76 per cent improvement after just one treatment.'


He shows me a single sheet of paper covered with columns of numbers written in biro. 'Each number represents a child I've treated. Parents fill out a form measuring their child's behaviour before and after treatment.


'After a single treatment one child, who had never talked, went into his parents' bedroom and started asking questions.'


To be absolutely sure, I ask him again if this treatment can cause children with autism to recover completely.


'Yes,' he replies. 'But we don't know why and a few children don't improve.'


It sounds incredible but I'm worried, I say, about my child having injections of a hormone that isn't offered by mainstream medics.


'It's totally safe. I've treated more children with autism than any other doctor in Britain,' he replies. 'The only limiting factor is money.'


Treatment is expensive. The telephone consultation cost £240, with the second at the office a further £200. He recommends a battery of blood, urine and stool tests available only from private clinics, at a cost of £1,546.


Subsequent consultations cost £150, and each monthly secretin injection is £450. There is also mention of infusions of 'immune globulin' to bolster the immune system at £550.


'The more injections a child has, the better the result,' he says.


'Autism can be a life sentence if you do nothing about it. And the sooner you start treatment, the more chance it will work.'


At no point during our conversations does he ask to see any medical records.


A more sympathetic character is Dr Asha Rekha Chagarlamudi, a locum GP who runs 'The Autism Clinic' one day a week from her home, a semi-detached house on a private estate in Bromley, South-East London.


She's a parent of a child with autism, so it would be hard to believe her motivations are anything but genuine.


Yet she recommends Archie should have intravenous chelation therapy and 40 sessions of Hyperbaric oxygen therapy (HBOT), which would involve my 'son' sitting in a decompression chamber similar to those used by divers suffering the bends.


She takes a medical history and says: 'Archie's symptoms are caused by inflammation of the brain. Chelation therapy will help eliminate the poisons from the blood which cause this - and HBOT will reduce the swelling.


'Chelation is most effective given by intravenous infusion, which you can only get in America because doctors here won't do it.'


She does not mention the recent death caused by this treatment.


Harley Street-based Dr Damien Downing, who claims to be a 'leading figure in the field of nutritional health', is also keen on chelation.




During our consultation I'm asked to fill in a questionnaire to assess the severity of Archie's condition.


'Toxins are everywhere, rubbish dumps, incinerators, mobile phone masts, microwaves, vaccines - this caused your son's autism,' says Downing, who charges £250 per consultation.


'Chelation in the form of an oil that is rubbed on to the skin will rid him of the toxins, and many children are completely normal after.


'But you must be committed to at least a year of treatment, if not more, before you see results.'


The treatment is a cause for debate even among committed DAN! practitioners.


In Dublin I meet Dr Gabriel Stewart, a specialist in chelation therapy for adults, who tells me he tries to dissuade parents from giving their autistic children intravenous infusions 'not because it's dangerous, but because it isn't effective in clearing mercury from the blood'. Consequently, Archie was not suitable for treatment.


He also warns that some 'DAN! doctors' are less than reputable.


'All you need to do is attend one conference in the US and you can say you're a DAN! doctor - and many of them aren't medically trained.'


Dr Lorene Amet, of the Autism Treatment Trust in Edinburgh, is one such non-medic.
Her doctorate is in HIV biology although she doesn't clarify this during the £120 consultation.


Amet takes a medical history, asks about behaviour and diet, and recommends a series of blood and urine tests that she says are not available on the NHS because 'doctors don't know about them'.


She continues: 'The tests give us a complete picture of your child's health and what has caused his autism.


'From the results we will design a diet and supplements plan. He could recover completely but early intervention is the key - you must act now or you'll regret it.'
I've been offered a bewildering number of treatments, but could any of them be right? Could any really work?


At the end of the investigation I speak to Richard Mills, a director of Research Autism, a coalition of parents, those with autism, academics and medical experts, set up by the National Autistic Society (NAS) and the Institute of Child Health to study new treatments for autism.


'Your experiences are not uncommon,' he says. 'There is no evidence that any of these treatments work. There is evidence that some do not work, and even could do harm.'



Mills, who has worked in the field of autism research for the past 30 years, describes the helplessness and despair parents feel when trying one unsuccessful treatment after another.


'Parents often tell us they weren't made aware of possible negative effects and many spend thousands, running up bills on credit cards, on treatments that don't work.


'Many of the practitioners who sell these treatments are no better than snake-oil salesmen. This kind of hard-sell approach is completely immoral.


'Lack of regulation means anyone can set themselves up and claim to be able to successfully treat autism, without any proof that it's actually possible,' he says.


Still, I can't help but think that if Archie were real, I'd be willing to try anything, and pay anything for a chance to help him live a normal life.


Dr Gillian Baird, consultant paediatrician at Guy's Hospital, London, and a leading expert on autism, explains that although autism is incurable, some children can improve.


'We know that there is something biologically different about the brain function of children and adults with autism, but we don't know what that is or what causes it,' she says.


'There are accounts of treatments that have helped but this is not the same as evidence.


'The reason some parents believe they see improvements is because autism is a condition that changes over time. And behaviour in all of us can be altered by environment and what we put into our bodies.'


She warns parents that invasive treatments, such as injections, carry a risk of infection.


Mills advises parents to ask to see research to back up any claims and ask for copies of any published studies to discuss with a GP or consultant.


'These practitioners often claim mainstream doctors aren't interested in helping children get better. This is not only completely untrue but hurtful.


'Doctors who devote their lives to working with them every day would like there to be a successful treatment for autism as much as anyone - they know just how desperate parents are for an answer.'


Jacqui Jackson urges parents of children with autism to think again before subjecting them to unproven treatments. 'Perhaps we should begin to look at autism as another way of being, instead of hoping to find a cure,' she says. 'These doctors promise they can make autistic children "normal". But who is to say what normal is?'


• For information about autism treatments, visit www.researchautism.net.





Daily Mail - UK Last updated at 11:00 PM on 31st May 2008

Device helps parents of autistic children who may wander off

By JILL MOON

MURPHYSBORO - A Southern Illinois company keeps up with the times by helping parents of autistic children.

Now that one in 150 children are diagnosed with autism, Care Trak caters to parents with a tracking device for their children who are prone to "bolt and run." Care Trak, which grew from its parent company, Wildlife Materials, that makes animal tracking systems, sells a portable, electronic device so parents can find their children if they run off.

Each year, thousands of autistic youngsters take off running, leaving their parents panicked and frantic.

"Care Trak focuses on serving these parents and caregivers of autistic kids," said Mike Chylewski, Care Trak's vice president of operations.
"Because autistic kids have limited or no fear of danger and have a high tolerance for pain, parents are understandably frantic to find their child. Care Trak is a source of action and calm in what is otherwise a frightening and urgent situation."

The Care Trak device is a telemetry-based tracking receiver that electronically tracks lost persons who are wearing the 1-ounce transmitter. Care Trak also supplies devices for Alzheimer's and dementia sufferers but sells directly only to parents of autistic children because of regular use by these parents.

Care Trak's co-owner, Richard Blanchard, explained that dementia patients wander off less often than autistic children and Blanchard would rather caregivers of dementia patients call local law enforcement immediately than try to operate unfamiliar equipment under duress and worry.

"With Alzheimer's, the caregiver is more often elderly themselves and the technology of using the equipment is more confusing," Blanchard said. "It's fairly easy to use, but under the pressure of a loved one being gone, it's harder to pull this equipment out of a closet and use it."

Whereas, caregivers of autistic children tend to be younger and well versed in electronic technology, he said. And the equipment is used more frequently with autistic children who go to school, crowded events, parks, shopping with parents and many other outings on a regular basis. Law enforcement agencies also would have a receiver of the clients with autistic children, yet parents would have their own receiver.

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"We view selling to parents directly as a win-win for all," Blanchard said. "Caregivers and parents have peace of mind and sheriff's departments and police organizations don't have to spend a lot of time and money to search."

The device helps locate individuals typically within 20 to 30 minutes, he noted.

"We prefer to talk to people first to find out how they'll use it and what their needs are," he said. "When we sell equipment, we don't just disappear. We stay with the client throughout the whole process to make sure they know how to use the equipment. If they can't use it when they need to, the equipment is useless."

He also pointed out that Care Trak is not a "babysitting" service but just another tool to help parents.

Autistic children tend to wander short distances, but still could end up in dangerous circumstances. The Autism Society of America estimates that 1.5 million Americans and their families are now affected by the disorder. However, many autistic children are highly intelligent, physically active, observant and inquisitive.

Care Trak can locate a child with autism up to one mile on the ground, day or night, inside or outside. The device is mobile so when parents realize their child has bolted, they can take the receiver and track them immediately. Since the Care Trak is a telemetry-based system, obstacles or overhead cover, such as clouds, do not hinder the device.
With Care Trak, individuals wear a small transmitter, usually on the wrist like a wristwatch. It gives a signal 24 hours, seven days a week, even in water while bathing or swimming. Users should change the batteries once a month.

With dementia patients, usually receivers are held only by support organizations such as sheriff's or police departments. If an individual wanders off, caregivers normally would call the department to locate the transmitter.

Parents of autistic children get an invisible perimeter system, which includes a small receiver and a scanning unit to be plugged into a wall circuit. The scanner continually looks for a signal given off by the transmitter. If the signal disappears, it lets the caregiver know the signal is out of range.

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The receiver's antennae can be removed and taken along to locate a child. When going out, parents can operate the device by internal batteries. At a park, the receiver can be set on a picnic table or if parents and child are walking, they can put the receiver in a handbag or satchel.

Blanchard encourages parents who live in an area without the Care Trak program to talk to area law enforcement to persuade them to become involved with the tracking program.

Care Trak's parent company, Wildlife Materials, started Care Trak in 1985 in Carbondale and moved both companies to Murphysboro four years ago. In 1970, wildlife biologist Robert Hawkins, who taught at Southern Illinois University Carbondale, began Wildlife Materials for wildlife research. Hawkins is now retired and Blanchard and William Liao, both longtime employees of Hawkins, bought the company in 2001.

Care Trak started when a Carbondale resident asked Hawkins to help him with his wife, who had Alzheimer's and walked off several times.

"He put a falcon transmitter on her," Blanchard recalled. "As the need grew, the Federal Communications Commission gave us authorization to produce products specifically for this application."
May 30, 2008 - 9:36AM-The Telegraph.com

Billboards put spotlight on autism

By Carl Chancellor/Beacon Journal staff writer

The Greater Akron Chapter of the Autism Society has decided to put a face -- make that faces -- on the brain disorder that affects 1.5 million people in the United States, including about one of every 150 children.

During April, which is National Autism Awareness Month, the Akron area's skyline will be dotted with 10 billboards featuring the faces of local children who have Autism Spectrum Disorder (ASD), a complex developmental disability.

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In addition to the photographs, the outdoor advertisements will feature an educational message about this common, yet little understood, disorder.

''All 10 billboards prominently feature the tagline: ''Intelligent. Unique. Autism.'' Each billboard also has it own secondary message, such as: ''Speech can be harder with autism -- Be patient;'' ''Making friends is harder with autism -- Be a friend;'' and ''People with autism see the world differently -- Don't we all?''

Lisa Weaver, president of the Greater Akron Chapter of the Autism Society of America, said the billboards are on display in Summit, Medina and Portage counties. The chapter also serves Stark and Wayne counties.

''We hope the billboards will help raise awareness and understanding of what autism is,'' Weaver said.

A collaboration of the Autism Society and Clear Channel Outdoor advertising made the billboards possible, she said.

Weaver, a Barberton resident, is the mother of two children. Her 13-year-old son Andrew has autism and is featured on one of the billboards.

''The message on his billboard -- 'Seeing the world differently' -- is so perfect for him,'' she said, explaining that her son has difficulty with ''communication skills.''

Autism can be mild to severe and not all autistic people are affected in the same way or have the same symptoms.



In rare cases, autistic people display extraordinary abilities, like amazing memorization powers or playing an instrument without ever being taught.

Weaver said her son began reading when he was 18 months old.

According to the Autism Society, the cause of the disorder is unknown and there is no cure.

The thrust of Autism Awareness Month and of the billboard effort is to encourage the public to educate themselves about the disorder and the challenges autistic people face. The hope is that understanding will foster respect and the realization that with help, kindness, patience and encouragement people with autism can show improvement.

More information about the Greater Akron Chapter of the Autism Society of America is available at www.asagreaterakron.com or by calling, 330-543-3955.

The Greater Akron Chapter of the Autism Society has decided to put a face -- make that faces -- on the brain disorder that affects 1.5 million people in the United States, including about one of every 150 children.

During April, which is National Autism Awareness Month, the Akron area's skyline will be dotted with 10 billboards featuring the faces of local children who have Autism Spectrum Disorder (ASD), a complex developmental disability.

In addition to the photographs, the outdoor advertisements will feature an educational message about this common, yet little understood, disorder.

''All 10 billboards prominently feature the tagline: ''Intelligent. Unique. Autism.'' Each billboard also has it own secondary message, such as: ''Speech can be harder with autism -- Be patient;'' ''Making friends is harder with autism -- Be a friend;'' and ''People with autism see the world differently -- Don't we all?''

Lisa Weaver, president of the Greater Akron Chapter of the Autism Society of America, said the billboards are on display in Summit, Medina and Portage counties. The chapter also serves Stark and Wayne counties.

''We hope the billboards will help raise awareness and understanding of what autism is,'' Weaver said.

A collaboration of the Autism Society and Clear Channel Outdoor advertising made the billboards possible, she said.

Weaver, a Barberton resident, is the mother of two children. Her 13-year-old son Andrew has autism and is featured on one of the billboards.

''The message on his billboard -- 'Seeing the world differently' -- is so perfect for him,'' she said, explaining that her son has difficulty with ''communication skills.''

Autism can be mild to severe and not all autistic people are affected in the same way or have the same symptoms.

In rare cases, autistic people display extraordinary abilities, like amazing memorization powers or playing an instrument without ever being taught.

Weaver said her son began reading when he was 18 months old.




According to the Autism Society, the cause of the disorder is unknown and there is no cure.

The thrust of Autism Awareness Month and of the billboard effort is to encourage the public to educate themselves about the disorder and the challenges autistic people face. The hope is that understanding will foster respect and the realization that with help, kindness, patience and encouragement people with autism can show improvement.

More information about the Greater Akron Chapter of the Autism Society of America is available at www.asagreaterakron.com or by calling, 330-543-3955

Published Apr 03, 2008 Akron Beacon Journal

Preparing for Autistic Children's Teen Years

North Jersey's autistic population is growing up, and school districts that have scrambled to start classes for the youngest students are turning their attention to the teenage years.

"This is the generation of parents that fought for high-quality programs starting at age 3," said Gary Molenaar, director of instruction at the Bergen County Special Services District. "Now these kids are aging up through the middle and high school years, and they want the same quality of service."

New classrooms for high school students are opening in Dumont and Rockleigh. In Ridgewood, a middle school dedicated to providing autism services opened this year with 24 students from Bergen, Passaic and Essex counties. Administrators expect it will grow eventually to serve 78 children. In Franklin Lakes, a new class for middle school students will open in September and it already has a waiting list.

Expanding services for older students is a pressing need.

In Bergen County, nearly two-thirds of students with autism were found to be between the ages of 6 and 13 in a 2006 survey of 73 school districts. More than one-third of administrators said they were concerned about having adequate secondary school classes in the future.

"The input is that this is going to be a graph that looks like this," said county Special Services Superintendent Robert Aloia, pointing skyward.

Throughout North Jersey, autism programs have long waiting lists at public and private schools alike. The state has the highest rate of autism recorded in the United States, at one in 94 children, according to a 2006 federal report. There is no clear-cut cause for the increase, though growing awareness is a factor.

The disorder is associated with repetitive, socially inappropriate behaviors and impairs the communication and sensory input skills children need to learn. Individuals with autism are diagnosed by their behavior and usually are described as being "on the spectrum," a reference to their wide range of abilities. Some may never speak. Others may learn to function normally as adults.

As students enter their teenage years, they pose a double challenge for educators.

Schools must continue the rigorous, data-driven behavior modification lessons that have become the gold standard in well- regarded North Jersey programs. But they must do so outside of the controlled classroom environment in order to teach students to use their hard-earned social skills in unpredictable settings.

"You might learn something in school, but have difficulty generalizing that in the community," said Roberta Wohle, director of the Office of Special Education at the state Department of Education. "You want students to have opportunities within the community, in a structured way, to help practice those skills."

At the Washington@Ridgewood program for middle school students run by the county special services district, each day's schedule includes lessons and "errands." One frequent assignment: Place lunch orders for the staff and pick up the food. Students earn a tip for their efforts, and then head to the local drugstore or supermarket to spend the money.

"They practice how to find products, how to ask people questions and how to talk to people who they don't know," said teacher Karen Piasecki. "It's also practice in counting money, and learning to wait for your change."

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Time is of the essence as children approach the end of their elementary school years. Learning is labor- and time-intensive for many students with autism, who lose their entitlements to school and therapy when they turn 21.

"Ten or 11 years might seem like a long time, but truly, it might not be for the individual with autism who requires a lot of repetition to learn skills," said Linda Meyer, executive director of NJ COSAC, an advocacy group. "Your goal in adolescence is to pick what's functional for the individual to learn, so they can be as independent as possible when they graduate."

Kathy Kienz's son Ryan, 13, attends the private Epic school in Paramus. In school, he is learning skills that hopefully will foster independence later in life, such as how to visit a gym. At home in Clifton, he has learned to make his own bed and load the dishwasher.

Kientz, who leads a local support group for parents of adolescents with autism, said she hopes that Ryan's years of schooling will prepare him for life after age 21. But she worries about a persistent dearth of services for a growing group of teenagers and adults with autism.

"We know it's coming," she said. "We know we've already got a population of adults that aren't being served, and we've got one in 94 children being diagnosed in New Jersey. We have some time now to prepare."

Source: Record, The; Bergen County, N.J. Tuesday, 27 May 2008, 15:00 CDT

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Living to learn, learning to live: A lifetime of dealing with autism

By RA’VAE EDWARDS/Jefferson City News-Tribune

May 26, 2008 | 5:26 p.m. CST

JEFFERSON CITY — All the small yet extremely celebrated successes in Chad Winkler’s 22 years have led him to his biggest success yet: college graduation.

On May 18, Winkler graduated cum laude from the Missouri University of Science and Technology in Rolla, with a bachelor’s degree in ceramic engineering with minors in history and chemistry.

For the past 18 years, he has worked, pushed, struggled to earn each of his successes. From the first time he was able to do a forward roll until graduating college with honors, Winkler always strived for success.

His battles started at age 4 when he was diagnosed as being autistic.

Then, when he was in fourth grade, he was diagnosed as having Asperger’s Syndrome, which is just one part of the spectrum of autism, sometimes referred to as autistic spectrum disorders. It is characterized by difficulties in verbal and nonverbal communication.

“Now I’m ready to spread my wings and fly,” Winkler said.

And that he will do.

In a few weeks, he will drive his new car and his new puppy to his new apartment in Salem, Ill., where he starts his new job.



“He’s an amazing young man,” said his mother, Becky Winkler. “He has had to overcome so much in his life and he’s successful. I always knew he would be.”

Winkler’s success in life and college doesn’t come as a surprise to his mother. Although she felt a level of personal guilt when he was diagnosed with Asperger’s Syndrome, she knew he was still a child with potential, and she never let him forget it.

“Even though others told us he would be nothing more than employable in a sheltered workshop, we pushed him to do his best,” she said. “He did it, and look at him now. It’s just amazing to see the man he has grown to be.”

Becky Winkler said there were times when she made him do things he really didn’t want to do.

“We’ve always tried to treat him as a typical child,” Becky Winkler said. “If he didn’t understand something or he couldn’t do something, we would back up and try it a different way.”

She encouraged his involvement with 4-H, supported his efforts to raise public awareness of autism through public speaking and taught him to always reach for the stars.




Winkler is a 2004 graduate of Blair Oaks High School. Growing up with Asperger’s, and dealing with the disabilities that come with it, was not an easy task. Being made fun of by his peers, combined with having to deal with some adults who didn’t believe in him, helped push him to succeed.

“It only made me work harder,” he said.

“When they would say things like that, it just made me want to do better,” he said. “It was hard, but I knew I could do it and I did.”

Winkler is modest when he talks about the obstacles and hurdles he has overcome. A shoulder shrug and a smile are indicative of his level of pride.

Although he is proud of his accomplishments thus far, he thinks that no one should set limitations on themselves.

Read More....

Information About Employment for Autistic Individuals

Having a job and earning a wage is a fundamental part of most adults' lives. It brings an income, independence and respect. Many people with autism or Asperger syndrome share this wish to work, yet currently only 6 per cent have full-time jobs. People with an autistic spectrum disorder (ASD) often find it hard to get and keep a job because of the challenges they face as part of their condition and because employers lack an understanding of autism. Employers often do not realise a person with an ASD can bring strong skills, abilities and talents to the workplace.

The pack which you can download below (it's the second link) provides information about how you can overcome these difficulties and the support that is available to you if you want to get a job.

Contents of the pack:

Having a job
Different kinds of work
How to start looking for a job
Support to help you get a job
Interview tips
Your rights under the Disability Discrimination Act When you start work
Information for parents or carers of someone with an ASD who wants to work
Further advice and information
PLEASE NOTE if you are experiencing problems downloading the brochures, please refer to the 'Help' page accessible at the top right-hand corner of the screen. Scroll down to get to the information on PDFs.

Alternatively, you can request a copy of the brochure of your choice from the NAS Policy Department on 020 7903 3558 between the hours of 10:00 and 16:00, Monday to Friday

The Undiscovered Workforce: Looking for a job (PDF)

Facts About Autism

Here are some facts about Autism provided by the New England Center for Children:
Autism Spectrum Disorders occur in 1-2 or more of every 500 births and 3-4 times more often in boys.


Autism is a developmental disability thought by scientists to have a genetic origin.


A family that has a biologically related relative with an Autism Spectrum Disorder is much more likely to have a child with an Autism Spectrum Disorder than a family without this history.


Autism is the third most common developmental disability following mental retardation and cerebral palsy.


75-80% of persons with Autism also have mental retardation.


Autism is more common than multiple sclerosis, cystic fibrosis or childhood cancer.


Early intensive behavioral intervention has been shown to produce marked changes in the skill deficits and problem behavior associated with Autism.

Below, please find recent facts about Autism compiled from sources including the National Institutes of Health, the Centers for Disease Control and Prevention, the U.S. Department of Education, and the Autism Society of America.


1 in 250 births

1 to 1.5 million Americans

Fastest-growing developmental disability

10 - 17% annual growth

Growth comparison during the 1990s
- U.S. population increase: 13%
- Disabilities increase: 16%
- Autism increase: 172%


$90 billion annual cost

90% of costs are in adult services

Cost of lifelong care can be reduced by 2/3 with early diagnosis and intervention.

A couple say visiting Disney World helps unlock their autistic son's closed world

Linda Shrieves | Orlando Sentinel Staff Writer
May 4, 2008

When Sara Miles tells people that she moved from Seattle to Orlando so her son could be close to Disney World, she knows what they're thinking.

That she's crazy.

But most people don't understand what it's like to have an autistic child -- to watch a talking toddler lose his speech and melt into a quiet world that no one else can enter. Most people don't know what it's like to see the doors to all your dreams slam shut.

So when Sara and her ex-husband brought their autistic son, Ben, to Disney World for the first time back in 2002, they were astounded. The boy who threw temper tantrums at the grocery store suddenly seemed quiet, patient and observant. The boy who rarely talked began naming the rides they had been on.

It was the first time that Ben had spoken words that his parents, teachers and speech therapists hadn't coaxed out of him.

"As soon as he set foot in the Magic Kingdom it was like someone turning on a light switch," says Ben's father, Ron Miles. "I know it sounds crazy to move across the country for this, but if it's the key that unlocks his potential, it's worth it."

For five years, Ben, now 14, has been a fixture at the Magic Kingdom. On weekends and school holidays, he can often be found zipping through the crowds at Fantasyland to get to his favorite place: Snow White's Scary Adventures.

Of all the rides at the Magic Kingdom, the Snow White ride captivates Ben the most. He has ridden it 2,084 times -- so many times that the cast members once took photos inside the ride and gave Ben a photo album when the ride temporarily shut down for renovations.

And when Disney cast members learned that Ben was approaching his 2,000th ride last month, they arranged for him to meet Snow White and the Seven Dwarfs, an event that included a kiss from Snow White.

Ben's parents aren't entirely sure why Ben loves the Snow White ride so much.

That's one of the many puzzling pieces of autism. Parents don't know why their child becomes attached to a particular toy or activity.

Yet, as the number of children diagnosed with autism grows, researchers are focusing more attention on this complex developmental disability. According to the U.S. Centers for Disease Control, one out of every 160 children has autism and more than 25,000 U.S. children will be diagnosed with autism this year.

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While autistic children and their abilities vary widely, there are some common traits. For instance, autistic children often develop a fixation on one topic or one interest -- and researchers have discovered autistic kids frequently obsess about animated characters. "Thomas the Tank Engine is a big show for kids on the autism spectrum," says Dr. Richmond Mancil, an associate education professor and autism specialist at the University of Central Florida. "These kids don't really have an interest in trains. They don't care about trains, but if it's Thomas, they're interested."

While other autistic kids became focused on things such as Legos and World War II tanks, Ben zeroed in on Disney movies.

Fantasia. Snow White. Beauty and the Beast.

By age 4, he knew how to operate the rewind and forward button on the VCR. He wore out videotapes, listening to sections of movies over and over, especially the section of Snow White in which the evil queen turns into a hag.

By the time Ben was 8, Sara and Ron -- by then divorced, but sharing custody -- decided to take Ben to Disney World. Privately, Sara worried that the vacation might end like most trips to the grocery store: with Ben screaming and crying and Sara uncertain what had set him off.

But when they walked into the Magic Kingdom, Ben's face spread into a huge grin. Then he ran up Main Street, through a sea of tourists, and headed straight for Cinderella Castle.

What astounded Ron and Sara, however, was Ben's speech.

To their surprise, Ben, who rarely spoke, began naming the rides. "The Haunted Mansion," "Snow White," "Pooh."

His behavior was strikingly different, too. He waited patiently in long lines. He was calm and happy. "We had never seen him like that out in public -- not ever," says Sara.

After the trip, Sara and Ron Miles decided that if Ben, their only child, needed to be near Disney World, they would pack up and move. As a teacher, Sara could relocate. Ron's a software developer, so his employer agreed to let him try working remotely from Florida.


Read more...

Specialist enhancing learning experience for county’s autistic students

Jennifer Raley
Cumberland Times-News

CUMBERLAND — As the autism specialist for the Allegany County Board of Education, Corrie Humbertson spends her days traveling from classroom to classroom helping teachers implement research-based strategies to enhance the learning experience for students with autism.

Recently, Humbertson, who has more than 30 years of teaching experience, completed the Professional Immersion Training Program at the Center of Autism and Related Disorders at the Kennedy Krieger Institute in Baltimore.

“It confirmed that a lot of what we are doing is right on target,” said Humbertson, who is in her third year as the first autism specialist hired by the board.

On a daily basis, Humbertson assists with building communication strategies, social dynamics and visual strategies.

“Children with autism are visual learners, so it helps for teachers to include visuals, like showing a picture on the overhead,” said Humbertson. “They also like to have a sense of their day, so it’s good for them to have a schedule in front of them, maybe with some pictures on it.



“My favorite part is being in the classroom with the kids and when I see a teacher get it and take a strategy and build upon it,” said Humbertson. “The teaching staff is so accepting and eager to learn — it really takes a team.”

“With the significant increase of autism, we are very lucky to have someone like Corrie,” said Sheree Witt, special education and student services director for the board.

“The more specialized the autism services are at an early age, the more likely children will be to demonstrate age-appropriate skills later.”

In 1998, approximately four to five children out of 10,000 were diagnosed with autism, and now it is one out of 150 to 160, according to Humbertson.

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A Program Designed To Protect Children With Autism

(NAPSI)-Raising a child is a challenge. Raising a child with an illness or disability such as autism is a journey with unprecedented struggles along the way.

According to the Autism Society of America (ASA), autism is a complex developmental disability that affects a person’s ability to communicate and interact with others. The Centers for Disease Control (CDC) reports that autism affects one in 150 children, with a higher concentration among male children, where one in 94 boys are affected.

Autism Speaks, a nonprofit organization devoted to autism, indicates that autistic children may have impaired communication, social and cognitive skills, very rigid routines and repetitive behaviors.

Since autism affects individual children to unpredictable degrees, there is no textbook method when it comes to caring for an autistic child. The ASA advises parents that it is important to be flexible and open-minded to treatment options, changing paths when need be. Methods for caring for an autistic child should be adapted to the individual child’s strengths, weaknesses and needs.

Parents should create a safe and nurturing environment for their child, assisting the child during difficult times with positive reinforcement.

There are many resources for parents to help them provide care for a child with autism. The ASA can equip parents of newly diagnosed autistic children with the tools and information they need to treat the condition.

Autistic children need to learn how to respond during a medical emergency. Many children are either too young or lack the ability to properly articulate their needs, especially during an urgent medical situation.

“Parents need to ensure that their child’s personal medical information is available in an emergency situation,” says Martin Kabat, Ph.D., president and CEO of MedicAlert Foundation International. “This will give them comfort and peace of mind, knowing that their child’s health will not be endangered due to insufficient information when it is needed most.”

One of the tools available to parents that can help protect autistic children in an emergency is the MedicAlert Kid Smart program.

MedicAlert, a nonprofit foundation, has been managing and communicating critical medical information on behalf of its millions of members since 1956. The MedicAlert Kid Smart program ensures that children’s medical records are immediately available to emergency responders to help with their treatment decisions.

MedicAlert’s 24-hour emergency response personnel also help identify children who are involved in emergencies or lost and notify designated family members and caregivers of the situation.

When enrolled in the program, children are provided with one of MedicAlert’s personalized identification jewelry designed just for children and engraved with a membership number, medical condition(s) and the foundation’s 24-hour toll-free hotline.

Children with autism have the tendency to act on impulse and may wander away from their caretakers, making identification and family notification critical when a child is found.

Robyn Olson, whose son Ryan has autism, recounts that, “Ryan doesn’t comprehend the danger he’s in when he wanders off. We enrolled Ryan in the MedicAlert Kid Smart program after the first time he got lost, which had us worried for hours as to where he might be. Now, with MedicAlert, we know we’re going to be contacted, usually within minutes. That’s a huge comfort to me.”

Parents should take advice from the ASA in remembering that in an emergency situation involving the health of their child, it is important to remain calm. Children have the ability to sense and copy your emotional state. There is no reason to make them worry. It is more beneficial to teach them how to calmly respond to a given situation.

The Parent Teacher Association (PTA) has joined with MedicAlert to bring about awareness of the Kid Smart program that underscores the importance in the safety and wellness of all children across the country. For more information about autism and other children’s conditions, visit www.medicalert.org/kidsmart.

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Autism affects a person’s ability to communicate and interact with others. It’s estimated that it affects one in 150 children.