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"The success of the child hinges on the success of the
parents and their ability to cope with their child's diagnosis."
- Cheryl Kelly
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New Challenges
While there may be some sense of relief in having professionals
confirm your growing suspicions that something is different about
your child, finding out that a child has a developmental disability
is never easy. Parents, when they are finally given a diagnosis for their child, usually experience a range of emotions including
fear for their child's well being and sometimes a sense of loss
about the future they had envisioned for their child. However, having a proper diagnosis can provide some sense of relief because it allows parents and caregivers to finally seek out the appropriate services for their child.
| Receiving a diagnosis allows
parents to begin educating themselves and to seek the empowerment
and support they need for themselves and for their child. |
Stress levels can be very high in many families affected by ASDs.
Parents and caregivers of a child or children diagnosed with autism
or another ASD often feel overwhelmed by:
- Needing to become an expert - educating self and others throughout
the child's life - understanding the complex psychological, medical
and social needs of the child
- Trying to find and access necessary services, effective treatments
and supports
- Facing challenges and conflicts in educational settings
- Dealing with numerous health professionals and other service
providers
- Coping with an added financial burden
- Social isolation. Living with a child with autism often means
an end to entertaining at home and accepting invitations to others'
homes can be difficult
- Altering the living environment
- No time left for other children or to take part in their usual
social and recreational activities
- Dealing with discrimination as the parent/caregiver of the ASD child,
i.e., other parents being reluctant to accept play invitations,
etc.
- Helping their child deal with bullying, discrimination, prejudice
while fostering their self-esteem and their unique abilities
- Living with adult children at home
- Stressed family relationships - shortage of time and energy
- Supporting children who have suicidal thoughts and other serious mental health issues
- Sometimes facing despair, depression and suicidal thoughts themselves
Types of Services
The kinds of services families may need to seek out in order to
increase their own capacity to cope and in order to begin to advocate
for their loved-one include:
- Relationship and parenting counselling for couples
- Individual counselling
- Family counselling
- Stress reduction programs
- Caregiver assistance, respite care and summer/holiday programming
- Parent/caregiver discussion forums and support groups
- Parent/caregiver education and skills building
- Training in treatment techniques
- Funding and financial advice
| ASC considers parents and caregivers who are responsible
for children with ASDs to be a vital part of the autism community
when dealing with issues related to ASD treatment, funding
and service provision. Many parents/caregivers of children with ASDs
have developed considerable expertise about autism. Their
first-hand knowledge of the needs and realities of life for
their children with autism has made them strong and compassionate
educators and advocates for the rights of all children and
adults with autism. |
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