Context Independent living
Almost everyone on the spectrum prefers their own place to live, where they feel safe, are not disturbed or distracted by others and where there is sufficient opportunity to pursue one’s favorite pastimes. In short; a place where they can be themselves.
Generally, people who live independently are more socially capable than others on the spectrum. However, being on the spectrum for them too means having difficulties which permeate all spheres of life and put them in a delicate balance. A wide range of supports should exist to help the independent individual; among which special measures related to the overall design of their homes.
According to a rather recent US national survey 84% of caregivers reported that the person with autism currently lives at home. Asked about the ideal living situations for the individuals in their care, slightly more than half (46%) answered living with his or her family. A group home would be better said 12% and 10% preferred a home of their own with a roommate.
Because of the large number of newly diagnosed youths, the demand for any sort of living arrangements – among which (semi-)independent ones – will continue its unprecedented rise. An article in the New York Times estimated half a million people on the autism spectrum will become of age in the next decade.
A wider but somewhat older study (2008) found 96% of those between 17 en 30 years of age lived with their parents or guardian. (76% if defined more strictly.) Two thirds of their parents were concerned with their housing needs. Only 26% of these parents believe their child will always have a place to live (compared with 60% of non special needs parents), while 15% said their child has the life skills to be able to live independently.
Briefly: the estimated percentage of youths living at home lies between 76 and 96%; those who want to and probably are able to live independently in the future is around 10 to 15%.
This section – “Context Independent living” – takes people who live alone as point of departure. While most recommendations will also apply when living together with a partner or a roommate, at times additional suggestions and considerations can be found in the ‘Context Child home’.
Living (semi-) independently presupposes one is sufficiently self-reliant; i.e. able to manage one’s household, to plan ahead, be flexible (‘shifting’), maintain sufficient overview and be able to control one’s emotions. The level of the ego-dimension should be sufficiently high, but not necessarily the autism dimension. Social and communication limitations may be severe and often form the basis for a lack of friends or love-relationship. Also sensory difficulties, which roughly run parallel with the severity on the autism-dimension, may be considerable.
Preoccupations, the third core-symptom, should, for instance, not lead to undernourishment or structural lack of sleep. Of course one may not completely fit this profile, so some additional coaching may be necessary.
Cases in which people on the spectrum live without any coaching or support are extremely rare; even when things are going very well for an extended period of time, life events or transitional experiences may warrant temporary professional coaching. This idea is at the heart of ‘life coaching’ as expounded in this report by the Dutch Health Council.
Recommendations Independent living
Below 60 recommendations are listed of which only one – no. 5 – is exclusively aimed at independent living, while 36 have applications in all contexts which are distinguished on this website.
New material is continually added. At the moment 44 recommendations have been worked out, distributed over five chapters and various themes, as listed in the following scheme. They are marked in blue (hyperlinks).
(See here for the organization of all recommendations.)
Recommendations around Independent living