The first generation of Autistic people to remain in the community rather than being "housed" is ageing.
Are we prepared?
Something parents of people with more challenging forms of autism will not tell you is how much we fear ageing. Both for ourselves and for our children. We won't tell you because it taps into our greatest, and most self-loathing, wish. Our wish to live longer than our children with special needs.
Not because we want our child's life shortened. Far from it!
It's because the fear of what will happen to our children when we are gone is so real and pervasive that we can't escape it. So we pray we live longer than our children so that SOMEONE will always be there to protect them.
Why should we be so afraid?
Is it because we believe our child should only be with us, never venturing into the world?
Are we hindering our adult children's development and independence?
Is it some egocentric act to make sure we are always "in charge"?
It is because there are no supports in place in society for our children.
And it scares us. Rightfully so.
What happens as the family caregiver ages and is no longer able to provide a home or support or advocacy for the autistic adult?
What happens as the autistic person them-self ages?
There is little to no information on how typical age-related illnesses and disorders present in an autistic person with cognitive delay and/or great sensory, communication or anxiety challenges. There has never been a generation before now of people with such developmental challenges who aged within the general population. In the past our children were taken from us and were horribly and cruelly kept in institutions, as far from sight as possible. They were drugged to the point of catatonia and confined and restrained and abused. Most did not live to a full life expectancy. It was a horrible existence that is thankfully disappearing. Autistic people are finally living life in their communities with their families and friends.
But how do we know if a non-verbal adult is showing signs of dementia?
Does a stroke present differently in someone with Autism and Acquired Brain Injury?
Will the several decades long use of medications commonly used for treating anxiety and/or sleep disorders in Autistic people have detrimental effects?
What are the early signs of a heart attack in someone non-verbal with a high pain tolerance?
How do you discover diabetes, and administer insulin , in someone violently terrified of doctors, hospitals and needles?
The list goes on.
And there are no answers.
Because these questions are NOT being asked.
These concerns are not being debated and addressed.
Public awareness of Autism was the old fight. Now the battle is to see that the general population realises Autistic children grow to be Autistic adults. And soon they will be Autistic Seniors. The battle is to heighten awareness within the medical community of this very real, and very neglected, concern. No parent should ever have to wish they outlive their child simply because society will not acknowledge that their child's needs grow and change as they age into adulthood and into their later years.
How will you, as a parent, as an advocate, as an educator, as an Autistic person, as a medical practitioner, as a scientist, as a theologian, as a SOCIETY, how will you ensure that services, supports and KNOWLEDGE are available to ensure autistic people can age WITHIN society.
Lets start the dialogue