Examining the unexamined life of an adult with autism: Part 1

This is the first in a series of posts examining the question of what I think might lead to a happy and fulfilling life for my adult autistic daughter, Lily.

The first and most essential basis for a happy life is that ones basic needs of food and water, shelter and warmth, health and safety should be adequately met. Some might argue that these are Human Rights and I think we would agree that they are at least American Rights. (For some reason Republicans are now balking at the idea that Health is a human right but this is relatively new. Richard Nixon practically invented Health Care Reform).

Because Lily has little sense of self-protection or awareness of danger, she needs people who care about her to watch over her at all times and they need to be trained and vigilant. They must help her prepare food and must be trained in adequate nutrition on a small food budget and how to prepare foods safely. The staff help her care for her house and keep it clean. They drive her to and fro in a van and take her into the community. They keep her safe from harm and keep her from harming herself.

Staff who work with Lily must also be watchful and aware of subtle changes in behavior that might indicate a medical problem and be active in searching out the cause.  New “behavior” is not just a “behavior”; but, might indicate a physical or emotional problem. They must take her to the appropriate health care provider for evaluation, (providing they can find one willing to care for a nonverbal autistic person on Medicaid).

I think basic needs must be met first before expanding upon the other areas of life that enhance happiness and fulfillment. Maybe some ascetics and monks can claim happiness and fulfillment on an empty belly, but not most and not my Lily.

There are adult persons with autism who need less support in these areas of  basic need but they might still need help for a number of years managing life in a more independent living arrangement.

Unfortunately, when communities and states need to cut budgets for social services because the tax rate is so low, lower than it has ever been in this country, too low to maintain our standards of living, too low to provide for basic needs for the elderly and disabled, the already low wages paid to direct care workers in these support service industries are so low that the quality of direct care workers suffers.

I am dealing with these issues of poor quality staff and unmet basic needs every day now. Although it is frustrating that Lily is not being challenged to learn skills or even maintain skills, the more pressing problems are adequate nutrition and safety.

Why does our society now value keeping money in the pockets of the rich  over basic human rights for the disabled, the elderly and the very, very poor?

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3 thoughts on “Examining the unexamined life of an adult with autism: Part 1

  1. Despite all the inadequacies – well documented in recent NY Times articles as well as in your own writing – do you see any moments of connection and warmth between Lily and her caregivers? Some years ago I worked as a consultant in nursing homes – another setting where basic needs are great and caregivers poorly paid – and I was moved by the individual acts of kindness and caring. Individual acts don’t offset systemic inadequacies, but I’m wondering if they occur in Lily’s home as well?

  2. There are a few individual staff members that bond with Lily. She has one friend now in Leah who Lily senses genuinely likes her. Lily will be at ease if Leah is there and she hugs her hello when I take her back to her house. Everyone else is just furniture or someone to challenge in the game of “Who is the smart one here”.
    There are others of course who do work very hard and do a fairly good job even though they have no particular connection or warmth toward Lily. I am grateful for anyone who actually chooses this job, as a full time job, one that I could never do myself.

  3. At one nursing home I asked a very overworked and underpaid nurse manager about her unfailing kindness and competence with the residents on her unit. She said she had been raised by loving grandparents after her own parents were unable to care for her. They were both now dead, but she saw her service to the elderly people under her care as a way of both giving back and of bearing witness to her grandparents’ belief in her. I’m glad Lily has a Leah with whom she can share hugs. Such a relationship is precious.

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