Complex High Needs of Adults with Severe Autism
Very few Ontario adults with severe ASD have appropriate supports to lead good and fulfilling lives in their communities. Some younger and middle-aged adults may have pretty good lives because of the dedication of their parents. As elsewhere in the world, the timely attention to the needs of young children on the Autism spectrum has not yet been matched by concern for the needs of adults. Almost all suffer from general assumptions that they have a poor prognosis as adults. Professionals and policy-makers may not think that they are worth much in resources.
Most adults diagnosed with classic Autism were not supported to develop communication, social skills or daily living skills. There are almost no resources to help them to continue learning. Too many have restricted lives in custodial care with no support for their autistic disabilities. Some are incarcerated with no social contact and some die tragic deaths. Professionals, agencies and caregivers may see autistic adults as mainly challenging because of their severe behavioural problems.
Autism is highly complex and affects each person in a unique combination of ways. Its multiple causes are not yet well understood. Autism involves disorders of the brain, neuroimmune and gastrointestinal systems. The central impairment shared by people with ASD is general difficulty with social communication and relationships. Other symptoms may include hypersensitivities and reactions to any or all sensory stimuli, inability to speak or other difficulties with language, intolerance of various foods and drugs, sleep disorders, seizures, low muscle tone, movement differences, unusual fears, and obsessions with routines and order. The presence and severity of these symptoms vary in individuals. Those most severely affected may express their pain and frustration in behaviours that can hurt themselves and others.
Whatever their original symptoms, autistic adults may also bear the scars of faulty assessments, treatments and teaching in the childhood and early adult years. Perhaps the greatest difficulties are the barriers raised by other people’s critical perceptions, attitudes and expectations.
Most adults who may have had the symptoms of ASD in early childhood were not detected or were given other labels. Those who were not diagnosed at all may have had social and learning difficulties in the school years and, as adults, discover or suspect they have Asperger’s or high-functioning Autism (HFA). But they can seldom get help. Autistic adults who live without support may be reclusive or eccentric; they may be labeled with various mental health disorders and at risk for severe depression and suicide.
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