But as brilliant and talented autistic characters proliferated on television and in movies, and celebrities began to publicly identify as being on the spectrum, families with severely impaired children began to feel that the autism spectrum diagnosis isn’t effective for children (and adults) with radically different needs.

The neurodiversity movement has done much to combat stigma and promote acceptance of autism in mainstream life. “Many of these individuals need constant monitoring, even as adults, because of safety concerns including being at a higher risk of abuse and maltreatment due to their need for help with daily living skills and personal care.” “They and their families are at risk of being marginalized by a focus on more able individuals,” the Lancet commissioners wrote. The separate category of profound autism is warranted, supporters say, because the needs of these children may be neglected if they are not identified. Noting the strengths and talents of neurodiverse people, they argue that people on the spectrum should speak for themselves whenever possible, rather than having their needs represented by parents and other neurotypical authority figures.īut parents of severely affected kids who are unable to speak for themselves say they are being overlooked in the focus on neurodiversity. They see autism as an identity, not a disability.

Since that change, many in the autism community, including many autistic self-advocates, have embraced the idea that autism should not be seen as a disorder, but as a neurological difference. The spectrum combined what had been five disorders, including Asperger’s syndrome, which was the diagnosis for high-functioning children with mild autism. Critics argue that the variation in services needed is covered by the current DSM-5 diagnosis of autism spectrum disorder, and that the new label will be harmful.Īll children with autism have been grouped together in the same broad diagnosis of autism spectrum disorder (ASD) since 2013, when the DSM-5 came out. Supporters say defining this group and estimating the number of children who fit this category is a step towards making sure more services exist.

They are also excluded from research about autism because most studies require that the study participant have an IQ of 70 or higher. Proponents of the new classification say that the needs of these children are at risk of being neglected because they are radically different from those who are less affected. Researchers suggest the reason for these disparities may be that fewer children in these groups who are mildly affected by autism are given a diagnosis. It was also higher in racial and ethnic minorities than in white children, and in children in low-income families than affluent families. The CDC study found that the percentage of kids with profound autism was higher in girls than in boys. Many have epilepsy and behaviors like self-injury and aggression that require round-the-clock support to be safe. Children with profound autism require help with tasks of daily living. The term profound autism is defined as having an IQ of less than 50 or being nonverbal or minimally verbal. The Centers for Disease Control and Prevention (CDC) recently released a study finding that 26.7 percent of a group of 20,000 8-year-old children on the autism spectrum would meet the criteria for profound autism. At the other are kids who are intellectually disabled, nonverbal, and in need of intensive, lifelong support.Ī proposal is gaining traction to give those severely impaired children a separate diagnosis from those who are higher functioning: profound autism. On one end of the spectrum are college-bound kids who have unusual talents and abilities. Autism is a spectrum disorder that can affect children very differently.

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