I knew families whose children had been diagnosed with autism and other related disabilities that would fit the definition of autism as it is now understood. The difference is that forty years ago, I never heard anyone talk about “high-functioning” autism or any of its milder forms. The manifestation of the disability was almost always severe and was often combined with intellectual disability, severe language impairment, and behaviors that interfered with education in regular classrooms and sometimes caused self-injuries or injury to other family members.
As a non-expert, I do not pretend to know enough to explain the explosion in autism diagnosis, but cases of severe autism have not abated. The needs of this population are growing, especially with the aging of family caregivers and the tendency for some advocacy groups to turn their backs on people with the most severe disabilities in favor of presenting an optimistic and more palatable image to the public and policy makers. If I had to rely on presenting a “positive” image of my children now and in the future to justify spending on services for them, I would be sabotaging the prospect of them receiving services that are both appropriate to their needs and effective in preventing harm.
A new organization called the National Council on Severe Autism (NCSA) has been launched “Pursuing recognition, policy and solutions for the surging population of individuals, families and caregivers affected by severe forms of autism and related disorders.”
This from a press release on 1/10/19:
“…The new organization is created to address pragmatically the many serious challenges in services, housing, and policy facing families, caregivers and individuals affected by severe forms of autism and related disorders.
“‘Autism is often romanticized and sugar-coated in the media and social media,’ said Jill Escher, NCSA President. ‘In contrast, our efforts will be guided by pragmatic realities. For countless families devoted to the well being of their disabled loved ones, the daily challenges can be overwhelming, and the prospects for the future extremely bleak. We will work to increase capacity and a range of new options for this population.’….”
The organization has gotten off to a good start with a Website that presents their reason for being, policy statements, and an active blog .
From the NCSA blog:
As a non-expert, I do not pretend to know enough to explain the explosion in autism diagnosis, but cases of severe autism have not abated. The needs of this population are growing, especially with the aging of family caregivers and the tendency for some advocacy groups to turn their backs on people with the most severe disabilities in favor of presenting an optimistic and more palatable image to the public and policy makers. If I had to rely on presenting a “positive” image of my children now and in the future to justify spending on services for them, I would be sabotaging the prospect of them receiving services that are both appropriate to their needs and effective in preventing harm.
A new organization called the National Council on Severe Autism (NCSA) has been launched “Pursuing recognition, policy and solutions for the surging population of individuals, families and caregivers affected by severe forms of autism and related disorders.”
This from a press release on 1/10/19:
“…The new organization is created to address pragmatically the many serious challenges in services, housing, and policy facing families, caregivers and individuals affected by severe forms of autism and related disorders.
“‘Autism is often romanticized and sugar-coated in the media and social media,’ said Jill Escher, NCSA President. ‘In contrast, our efforts will be guided by pragmatic realities. For countless families devoted to the well being of their disabled loved ones, the daily challenges can be overwhelming, and the prospects for the future extremely bleak. We will work to increase capacity and a range of new options for this population.’….”
The organization has gotten off to a good start with a Website that presents their reason for being, policy statements, and an active blog .
From the NCSA blog:
If you wish to Share your story, the NCSA wants to hear from you:
Please share with us your story and concerns, and also your ideas about how to improve the lives and prospects for all those affected by severe forms of autism and related disorders. Topics may include, for example:
• Housing and long-term supports
• Education and training
• Day programs and employment
• Medical care and therapeutics
• Behavioral crisis and crisis care
• Financial issues
• Autism research
• Individual, parent and family well-being
Your information will help inform NCSA’s efforts, and will be kept confidential. If follow-up information is needed, we will contact you. Thank you for your generous assistance and time...
Amy Lutz, a parent of an adult with severe autism, writes about the organization on the Inspectrum blog from Psychology Today: "National Council on Severe Autism (NCSA) Launches; New organization will advocate 'for those who cannot speak for themselves.'", 1/14/19.
Please share with us your story and concerns, and also your ideas about how to improve the lives and prospects for all those affected by severe forms of autism and related disorders. Topics may include, for example:
• Housing and long-term supports
• Education and training
• Day programs and employment
• Medical care and therapeutics
• Behavioral crisis and crisis care
• Financial issues
• Autism research
• Individual, parent and family well-being
Your information will help inform NCSA’s efforts, and will be kept confidential. If follow-up information is needed, we will contact you. Thank you for your generous assistance and time...
Amy Lutz, a parent of an adult with severe autism, writes about the organization on the Inspectrum blog from Psychology Today: "National Council on Severe Autism (NCSA) Launches; New organization will advocate 'for those who cannot speak for themselves.'", 1/14/19.
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For more information:
Website: ncsautism.org
Email: info@ncsautism.org
Facebook: https://www.facebook.com/ncsautism/
Twitter: @ncsautismorg
Mail:
National Council on Severe Autism
PO Box 26853
San Jose, CA 95159-6853
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