I am his only friend. What will happen to my son?
Homeless shelters, lack of supports for adult living with autism
By Lorilee Snook
Editor's note: Lorilee Snook is a pseudonym. CBC has agreed to use it in order to protect the privacy of the author's son. This commentary is part of Critical Condition, a series focused on the health-care system in Newfoundland and Labrador.
Thirty-odd years ago, one winter's night, my son came into the world. I was overjoyed at the sound of his first cries.
But as my son grew, the cries of his infancy evolved into frequent screaming. His teenage years brought even more escalations.
They progressed to psychotic episodes, threats of suicide, and high-risk, out-of-control behaviour.
In 2005, when he was 21, he spent several months at the Waterford Hospital. He was sent home without a definitive diagnosis.
Now, I am a senior and I wonder what will become of my son when I am no longer here to care for him.
Taking out a loan to pay for counselling
I continued seeking help for my son, but waiting lists to see mental health specialists were lengthy with no interim support.
As a single mother of two, the cost of private care was prohibitive, so I took out a loan to get him the immediate support that he — and I — needed.
The counsellor suggested his behaviour and struggles could be due to autism spectrum disorder.
Attempts to find professionals at Eastern Health who could help my son were unsuccessful.
I paid out of pocket to have my son diagnosed at a private clinic.- Lorilee Snook
No one had in-depth knowledge, training, or experience in helping adults with ASD.
When he was 30, I paid out of pocket to have my son diagnosed at a private clinic. Not just with ASD, but also attention deficit hyperactivity disorder, and obsessive compulsive disorder.
I was told he has Asperger's and a very high IQ, but lacks emotional intelligence and the skills necessary to thrive in our society without appropriate support.
Policy concludes my son is 'too smart' to get help
I thought an official diagnosis would finally get my son the support he needs, but that is not the case.
Put plainly, our government has a policy that says my son is too smart to need help because he's scored above 70 on IQ tests.
In 2015, the provincial government recognized that there is no relationship between intelligence and autism, and promised to eliminate the archaic IQ-70 policy. However, the policy remains unchanged.
My son's high IQ did not qualify me, as his caregiver, to receive respite or guidance.
My son has lived in homeless shelters
Lacking skills to deal with ASD, I was eventually unable to manage my adult son's needs and sometimes violent escalations.
Had help been available to me, I would not have been forced to make the heartbreaking decision to have him removed from my home.
In the last two years, he has lived in two shelters and three apartments.
Impulsivity and irrational decision-making persist, due to his low emotional intelligence. It is almost impossible for him to budget money and food, so I continue to help him as much as possible while encouraging his independence.
His difficulty with social interactions results in isolation, loneliness and depression.
He is 33 now, and I am his only friend. Who will help him when I'm gone? And how many other families are in similar situations?
We have the highest autism rate in Canada
A recent report by the Public Health Agency of Canada shows that Newfoundland and Labrador has the highest rate of ASD in the country, with one in 57 affected.
This does not include the many adults, like my son, who have yet to be diagnosed by Eastern Health.
A crisis is imminent.
The chronic shortage of qualified ASD experts in Newfoundland and Labrador exposes the huge gap in our mental health care system.
Intensive training to provide ASD specialists for adults must be a priority and addressed immediately.
Further to that, funding and resources already implemented for school-aged children must be extended to support adults with ASD, including those who are considered 'high functioning.'
I fear for my son's future
My son struggles to accomplish the many ordinary tasks necessary for independent living.
While there are some organizations, like Empower, that can assist in a few of these areas, these supports are not maintained throughout holiday periods or weekends.
My son needs daily guidance and support to maintain his independence and assist with things like budgeting, job-seeking, and meal planning.
Emotional intelligence should be included in future assessments when determining which services can be made available.
As human beings, we are programmed to seek social interaction, but many who are on the spectrum are not always comfortable around others. A solution must also be found to facilitate connections and promote a sense of belonging while allowing for autonomy.
My son needs help in navigating the health-care system, seeking adequate and appropriate supports, and he needs a community that will help him thrive when I am no longer here to help him.
My son has the potential to build his self-esteem, feel valued, and lead a productive life.- Lorilee Snook
I have spent countless hours on the phone, in waiting rooms, knocking on doors, being told, "No, your son does not qualify for this service," and searching for any and every support I can get.
Recently, after what was deemed a psychotic episode, my son was admitted to the Waterford Hospital again. After a few days, he was released without any supports or followup.
My son has the potential to build his self-esteem, feel valued, and lead a productive life, but without the supports he so desperately needs, he is unable to establish a career or achieve the success he strongly desires.
His potential is being wasted, along with that of many others. Will help come too late for my son? Will it come at all? Does anyone care?
What changes would you like to see in the health-care system in Newfoundland and Labrador? Get in touch at [email protected].
