Honourable senators, I rise today to speak on the inquiry of Senator Munson calling attention to the Senate of the tenth anniversary of its groundbreaking report Pay Now or Pay Later: Autism Families in Crisis.

I congratulate Senators Munson, Housakos, and Bernard for their exemplary leadership on this file and for raising public awareness about autism.

Autism affects every sector of society. A national autism strategy must be alive to the systemic barriers and negative attitudes that impede access to ASD-related services across multiple sectors.

The criminal justice system is no exception. In fact, research over the past two decades shows that people with ASD and other developmental disabilities are seven times more likely than the general population to come into contact with law enforcement during their lifetime. Since co-occurring mental health conditions such as anxiety and depression are common in individuals with ASD, prisoners with ASD suffer in prison environments.

Honourable senators, we must ensure that people with ASD and other disabling mental health issues are not imprisoned because they cannot access the resources and therapeutic support they need in the community.

Yet, just this past week two such situations were brought to my attention.

One is a young man whose parents, one a police officer, were encouraged to call the police when their adolescent son’s aggressive outbursts became difficult for them to manage. They were incorrectly advised that there would be more services for their son in the criminal justice system. This was not true, and now they have a more unruly son whose trust in his parents has been severely shaken and whose parents are now expending thousands of dollars on lawyers and medical assessments to try to extricate him from the system. If they manage to do so, they will then continue to experience the pre-existing series of challenges a result of the inadequacy of the supports, services and resources available to provide much-needed assistance.

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The other situation involves a woman serving a prison sentence, a woman the prison staff consider to be so incapacitated that they have argued that she is not capable of consenting to assessments, much less treatment. Her mother has advised that her daughter was previously diagnosed as autistic.

She is segregated in a maximum-security unit, as this is the easiest place for staff to manage her self-harming behaviour. When they deem her to be out of control, they pepper-spray her. Then when they take her to the shower area to decontaminate, instead of staff turning on the water for her or advising her to do so herself, they leave her there. Instead of turning on the water to relieve the burning sensation of the pepper spray, she responds to the pain by punching herself in the face. One videotaped incident records her bashing herself some 100 times. The day after that incident, not only was her skin burned from the spray, but she was so battered that she was described as looking as though her head and face had been beaten with a bat.

These are but two of the reasons we need to invest now in community-based supports and services. It is also why we must ensure that those we do not prevent from being criminalized or imprisoned are moved out of prisons and into provincial or territorial health services. In the federal prisons, section 29 of the Corrections and Conditional Release Act allows for such transfers for prisoners for the purposes of accessing necessary health care.

Families must be equipped with adequate resources and guidance to support children with ASD. As senators who have spoken before me have underscored and as research supports, intervention at an early age can improve a child’s chances of reversing some of the effects of autism. However, most families struggle to bear the enormous costs of raising a child with autism.

The situation is particularly dire for children and their mothers who are incarcerated and those who live below the poverty line. Most mothers who are incarcerated are the sole providers of their family’s needs at the time of their imprisonment. Their imprisonment carries with it devastating consequences of depriving their children of care. This burden is especially unbearable for children in need of special care, including children with autism.

When Nelson Mandela, himself a former prisoner, came into power in South Africa, he ordered that all mothers with children under the age of 12 be freed from prison. In justifying his decision, he characterized it as part of “A collective effort [that] has to be launched by the government, civil society and the private sector to ensure that every child is looked after, has sufficient nutrition and health care.”

As we look toward a national strategy for autism, we too must recognize and support the role that mothers play in caring for their children’s health on a day-to-day basis, particularly in families lacking other resources for care. We must ensure that the correctional system does not continue to further burden impoverished children with ASD by sentencing mothers and their children to separation.

We also need to address the stigma that prevents parents with criminal records from providing educational supports to their children with ASD. Some of the mothers I know who wish to volunteer to provide in-class support for their children are prevented from doing so because they have criminal records. Community-based alternatives to imprisonment, as well as increased access to resources envisioned by the report Pay Now or Pay Later: Autism Families in Crisis, will be instrumental components of any viable strategy to help people with ASD.

We must also be mindful that autism does not discriminate on the basis of race, ethnicity or socio-economic status. As such, it is a grave injustice to allow these differences to obstruct a national autism strategy. Indigenous communities have struggled to access ASD-related services because of systemic racism and social isolation. Any framework for a national autism strategy must be sensitive to the needs of marginalized groups if we are to ensure fair and effective delivery.

Honourable colleagues, many of us call on you to endorse the recommendations of the report Pay Now or Pay Later: Autism Families in Crisis, as well as the removal of systemic barriers across diverse communities and within the criminal justice system. Both approaches are integral to a nationwide strategy committed to helping people with ASD and the families that support them.

Thank you. Meegwetch.