PRESS RELEASE DECEMBER 2003

Perm Autistic Society

Bringing Hope to Families of Children with Autism, a New NGO is established.

Having a child with an autistic spectrum disorder has a great impact on the whole family and can leave them all excluded from ‘normal life’. They suffer major disruption, often one parent has to give up the possibility of working to care for that child (then adult), siblings are neglected, marriages torn apart and the emotional stress is extremely damaging. Films like ‘Rainman’ have done much to raise the awareness of autism with the general public. Unfortunately, they have also led to a number of misunderstandings, for example that all people with autism have unique and special abilities. Autism is in fact the core condition of a spectrum of disorders, which all share common characteristics but which are manifested in very different ways. Autism is a significant disability, affecting communication and interaction not only with other people, but also with the world. The degree of autism varies along a dimension of severe to mild, although the effect is always serious. Perm Autistic Society was formed on the initiative of a group of parents and professionals. Members decided to move on from being a parental support group to an established organisation due to ever increasing numbers of families coming to their attention. It is hoped that being a society will give them more support in raising awareness of autism in the city of Perm. The society already has a small library of published literature and lots of other information from other well established autistic organisations from abroad. In addition of course, members have a wealth of personal experience that could be of real use to other parents/carers of children newly diagnosed.

Describing the support she feels she gets, one parent, Julia comments……………

“I have had to give my youngest child (with autism) so much attention, I feel I have neglected my other two children. They have had to apply for higher education themselves, study alone and a lot of the time, take care of themselves. My daughter is already concerned about the prospect of having to look after her youngest brother after I have passed away. What will happen then, is a great cause for concern.

It’s been a great relief meeting for the first time, other parents with similar worries and concerns.”

Another parent, Lena explains………………………………………………………

“I have tried to explain my daughter’s condition to people in my house. As far as they are concerned, my daughter is simply not well-brought up. We’ve stopped getting fresh air in a courtyard because of the gossip, it’s very hurtful. I can relax with other parents from the society because everybody understands.”

Maria Pallot, a volunteer professional from GB who is currently the director of the organisation says……………………………………………………

“PAS is an important point of contact for families of children with autism, providing not only a source of emotional support but also of valuable and up to date information regarding the condition. It is important to raise public awareness of disabling conditions such as autistic spectrum disorders which are not so visible to the eye, as in the case of physical disabilitiy. We are pleased to have the support and access to experience of other established autistic organisations in Russia and abroad. We look forward to working with local authorities and other services and to welcoming new members, both parents and other interested parties.”

Should anyone be interested in joining the society or in supporting it by charity, they are kindly requested to contact the society by post: Attn: PAS, Ul. Sivkova 14, Industrial District, 614022 Perm; by e-mail: permautisticsoc@mail.ru or pager: 055 abonent 787.

Notes to the editors

1. Autism (including Asperger syndrome) is a lifelong developmental disability occurring in varying degrees of severity. It is characterized by a triad of impairments which involve difficulties forming social relationships, problems with verbal and non-verbal communication and lack of imagination.

2. For more information about this press release please contact permautisticsoc@mail.ru or pager: 055 abonent 787.

3. For further details about autism and the Perm Autistic Society, please contact permautisticsoc@mail.ru or pager: 055 abonent 787.

Interviews with the director of the Perm Autistic Society can be arranged on request.