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.
SAMPLE CARE PLAN for adult in his 50s, with severe ASD and other complex, high support needs:
Whole-body Autism Spectrum Conditions (Level 3) involving movement and sensory disorders that make him hypersensitive to sensory and environmental stimuli, including sight, sound, touch, smell, taste; air pressure, temperature, humidity; as well as in proprioceptive and vestibular senses and acutely sensitive to change or stress.
Inability to speak with voice and difficulties with social communication, leading to negative perceptions and under-estimates of his intelligence by others.
Apraxia (and Catatonia): inability to coordinate his body (about half the time).
Cycles of anxiety and depression.
Epilepsy: tonic-clonic seizures averaging more than one per month and not amenable to drugs and, perhaps related, occasional intense rage disorders or meltdowns.
Intolerance of many foods and all drugs with gastrointestinal, immune system and sleep issues.
Special fears and anxieties around any routine changes or medical procedures
On the positive side, he is not sorry for himself, always hopeful and trying his best. He loves to garden and care for his home. He likes running, walking, art, music, reading and learning in various subjects. Using AAC (Augmentative or Alternative Communication), he shows he is intelligently aware of what people say and feel and responds well to interaction and encouragement.
His complex, high needs call for special qualities in the people who support him and share his life as well as concern for various environmental factors.
At all times, someone must be on the alert for any need—notably for seizures, mood swings, and sleep and gastrointestinal issues.
Facilitating his self-expression needs reliable, experienced support and is worth the effort to clarify problems and suggest helpful strategies.
All supporters need confidence, empathy and patience, and to be encouragers.
A co-ordinating supporter must:
– set an example in positive facilitation of a good seamless life led by the person
– inspire, train and provide resources for innovations that make life worth living
– observe, record and interpret everything
– relate to any resource people
– co-ordinate and administer all other support, including financial management
– while encouraging all concerned to share household and support tasks, be prepared to do any or all of these when necessary.His home and garden are spacious, in a friendly, accepting neighbourhood.
– Home is laid out to give him the sense of being central in it with quiet spaces to retreat to.
– He has privacy in his own bedroom with ensuite bathroom.
– Diet kitchen and secure pantry respect intolerances and preferences and avoid cross-contamination.This adult has also experienced most of the various interventions and therapies outlined above—as a child or adult. Still of lasting value are communication, dietary intervention, sensory integration, as well as art, music, animal-facilitated and horticultural therapy.
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