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