LIVING WITH AUTISM AND DEVELOPMENTAL DELAY.
Assessment & Diagnosis
Many parents have huge difficulties when it comes to achieving a diagnosis.
Once diagnosed, if it is appropriate and their child meets the necessary criteria, the next 'challenge' is to acquire a Statement of Educational Needs in order to provide the appropriate support.
Butterflies aims to greatly cushion the role of the parents, thus strengthening them to work towards the best possible outcome regarding diagnosis and education.
Through in depth discussions with its members, Butterflies has realised that perhaps, the current accepted 'criteria' for both assessment and diagnosis needs to be looked at with fresh eyes. It is only through effective Communication with the Parents, Teenagers and Young Adults that the systems can become realistically knowledgeable as to the complex challenges that are being faced by the entire family.
Education:
ASD is a silent and often insidious compromise of an individual's perception of the world around them that consequently affects every aspect of their life.
Butterflies members feel that there remains an urgent need to establish a consistent and solid educational awareness for both Head teachers and their staff. This would best serve existing diagnosed children and increase vital intuition regarding children who present with at least some of the recognised criteria.
The many presentations of the Autistic Spectrum are not always easy to recognise especially for those in education. This can make a dedicated educational worker feel frustrated.
Therefore, perhaps more training and supervision would be helpful to ensure that schools play their part effectively and with all care.
Isolation:
Many Butterflies members have expressed how isolated they feel because of the particular lifestyle they have to adopt when providing adequate and often complex care for their child.
Butterflies parents will always receive sensitivity, encouragement and a sense of commonality by being part of a group which can help to lessen the overwhelming feeling of isolation and frustration.
Emotional and Physical Health of Parent:
Often overlooked is the overall well-being of the parents/carers.
If this is not acknowledged the whole family can experience severe, on-going crisis.
It is commonplace for parents to experience a complex compromise of their health as a direct result of their roles.
If we fail to support the parents we cannot claim to be supporting the child/teenager.
It is also acknowledged that the numbers of single-parent families are
increasing where either a mum or a dad has to shoulder the responsibilities very much alone.
From Child to Adult:
Within Butterflies we understand that parenting a child on the vast Autistic Spectrum is for life.... some things may improve, some things may worsen... our children are very individual and outwardly deceptive in their abilities.
To the outside world, our children can sometimes appear to be absolutely fine with no disablity.Thus,as they become older and enter adolescence, their inner challenges can become intensified in relation to Social Skills, Personal Safety and the ability to plan and create a positive adult life. Yet, they do need to be encouraged to achieve a measure of Independence and contribute to society with their individual Talents.
Butterflies members therefore believe that the realities of living with an Autistic Spectrum Disorder (ASD) should be acknowledged as a serious Societal concern by the systems and decision makers. This suggests that the overall provisions and services need urgent attention from Toddler to Adult.
Those who slip through the net:
There is potential for a child who has not been adequately supported and cushioned to become more vulnerable regarding crime, alcohol, drugs, etc. If their family has suffered crisis, the young person's vulnerability is heightened.
As a group, Butterflies also wants to acknowledge and support those who are less able to parent their children as successfully as they would desire, especially those who live with their own undiagnosed autistic tendencies.
Most parents stoically and with all sense of responsibility endeavour to create the best possible scenario for their child's future. They deserve to be honoured and assisted.
Ultimately.......
Butterflies sincerely wants to 'work hand in hand' with the systems and decision makers in order to enhance the existing services, thereby supporting the families to the best of everyone's ability.
Acknowledgments of some Professionals:
As the group has gradually come to the awareness of the systems, many professionals have wholeheartedly agreed that the current provision of services lack continuity and realistic support which leaves them feeling frustrated that they are not providing the best possible tools for families. They also acknowledge the sudden severance of any 'realistic' support when a child's Statement of Special Educational Needs ceases at age 16, despite the fact that the effects of the ASD remain.
We acknowledge and express our appreciation to the National Autistic Society for their on-going, persistent efforts and achievements with regard to legislation.
