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AUTISTIC PERSONS WITH BLINDNESS AS AN ADDITIONAL HANDICAP

 

Else Johansen Lyngseth, Head of Educational Department at Tambartun National Resource Centre of the Visually Impaired in Norway.

May Nyheim, Senior Advicer at Tambartun Resource Centre and Co-ordinator for the sub-project Autistic Persons with Blindness as an additional Handicap.

 

Some common denominators are to be found between blind and autistic persons if one compares their peculiarities, problems and personalities. In many cases these common traits have various reasons and functions.

In both groups we can see following problems:

-Absence of constructive activity
-Lack of ability to be engaged in play
-High level of echolalia
-Need predictable systems
-Problems with sosial rules for behaviour and problems with literal sense
-Problems of generalisation
-Blindisms and stereotyped behaviour
-Passivity towards the surroundings

Degree and extent of these patterns vary, and some are more socially acceptable than others. When a person has no eyesight, the blindisms are easily explained away as caused by the loss of vision. No matter what the reason may be, they prevent learning and constructive activity, unless they represent reactions of attention towards the surroundings. This may create problems in social contexts.

In Norway some of the people with blindness and autism earlier lived in the central institutions for mentally retarded, others in special schools for the blind.
In 1990 a mayor reform was implemented directed towards people with disability in our country where the municipalities were given the task to secure the quality of life for this people. The bases was that all individuals are equal, with the same rights and possibilities as everyone else. The right to have a good life, including a house or an apartment of their own, a job to go to, possibilities for making friends, and the right to participate in leisure time activities in the local communities.

Special social workers were employed to take care of the disabled person s daily problems in the schools and in their homes.

When the reform was completed, we expected a large number of visually impaired people referred to our centre. This did not happen. New clients with autism with blindness as an additional handicap were not registered at all.

The diagnose blind and autistic is very low frequent. Blindness is considered as a serious disability, autism is traditionally looked upon with mystery and negative attitudes.

Historically, visually impairment has often been explained as the reason behind strange behaviour. Professionals working with visually impaired have often been fighting against the diagnose autism. Our experience shows that parents often get a relief when the diagnose autistic is set. It takes away a lot of guilt. It is not their fault that their blind child acts strange and has a different development compared to other blind children.

A Norwegian research among the pre-school children, blind before the age of 8 months indicate that 40- 50 % have sufficient scores of criteria to be given the diagnose autism. Brandsborg, K. (1993). (Psychological-social Development of Congenitally Blind Children)
This research was carried out among blind pre-schoolers with no registered brain dysfunction, and it was a longitudinell research over a periode of six years.
The scoring was done according to their attitude and behaviour within the criteria of DSM III-R, wich is one of the tools used for diagnosing autism.
This research tells us that visual impaired children has a risk for developing autism or parts of the autistic syndrome.

We have no statistics showing the occurrence of the group autistic persons with blindness as an additional handicap. An anticipated occurrence is one autistic visual impaired child born each year in Norway. If we also include mentally retarded blind children, or blind children with other additional handicaps, the real figure must be higher. We assume that there are a lack of registration of persons with blindness and autism in Norway.

75% of the visually impaired getting service from Tambartun Resource Centre are mentally retarded in various ways or have other additional handicaps.

The most common additional disabilities are:

-autism
-mental retardation
-c.p. (cerebral palsy)
-other physical disabilities
-deafness or hard of hearing

The frequency of visual impairment among autistic people is relatively relative high.
One possible reason is that the frequency of self- destructive behaviour in this group is fairly high. In our work for the Autism Program for the last two years we have registered six persons who have serious visual impairment caused by self-destructive behaviour. This figure may be is far to low, but I want to point out that the self-destructive blind and autistic persons are few.
 
 
 

Another common denominator seen between blind and autistic people is characterized by display of stereotyped activities. These include:

-idiosyncratic stereotyped movements
-body-roling, moving the trunk or the body back and forth in a rhytmical fashion
-rotating movements of the trunk, eye-balling, pressing fingers, most often the thumb, rhythmically against the eye ball
-hand fluttering
-head-banging
-twirling hair around the fingers
-making grimaces
-placing themselves in bizarre postures

Similar findings have been reported of the occurence of stereotyped activity among blind, autistic, and mentally retarded children. The only discrepancy is that a higher frequency of stereotyped activities is found among autistic children upon social contact.

Tools for diagnosing autistic persons with blindness as an additional handicap are not available, and nobody has had an official responsibility to carry out the work in Norway so far.

Working with blind and autistic people can be a great challenge, but we do not know enough to give services that is satisfying for this group yet.

A National Program for development of competence on autism- "The Autism Program" is a 5 year long co-operative project involving two Ministries. The university of Oslo is the acting institution.
The Autism Program is divided into several sub-projects where "Autistic persons with blindness as an additional handicap" is one. Tambartun Resource Centre for the Visually Impaired is the co-ordinator of this sub-project. 12 blind and autistic persons take part in the project. Their ages are from 3 to 40 years, with different levels of function and geographic background.

General goals for the project:

1. Contribute to better efforts and services for autistic people on a national basis, and to ensure a satisfactory quality of these measures in the future.

2. Contribute to development of a system implying a national network of competence, taking care of the needs for establishing and conveying top level competence in services for autistic persons.

In order to reach the goals for this project it seems necessary to make a triangulation study of the characteristics for autistic persons, the characteristics for blind persons and then compare the two groups to find the characteristics for blind and autistic persons.

This can in our opinion, be done only by co-operation between agencies for the blind and agencies for autistic persons, working closely together with combined cases of autism and blindness.

For every blind and autistic person in the project we have made a plan for habilitation. These plans are described for each individual based on information from the careperson`s knowledge and on competance of the person parcipating in the project. We have developed an interwiev-guide for this work. The blind and autistic persons personality is the basic point for the contents. Plans are made for a period of at least 5 years, and are made as concrete as possible. The goal of these plans is to secure that the education of each individual is functional and focused on activities to day and future activities.

This work should enable us to offer better and more co-ordinated services in relation to needs, goals, and request for the autistic person ,parents, staff and others in need of these services.

The Autistic Program started in 1993. The work is getting on very well and "The National Autism Program" will end in December 1998.

Tambartun National Resource Centre for Spesial Education of the Visually Impaired,
N-7084 Melhus
Norway
Tlf: + 47 72 87 93 00
Fax: +47 72 87 24 10 

The National Autism Program:
"Autismeprogrammet"
Nasjonalt program for utvikling av autismekompetanse
Institutt for spesialpedagogikk
Universitetet i Oslo
Postboks 1144 Blindern
N-0317 OSLO Tef: 47 22 15 03 60
NORWAY
Fax: 47 22 15 75 56 
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