Hooray – A Perfect Book for Us Autism Grandparents!

I’ve read a bunch of books on autism, and a clear favorite has now emerged: the 128-page Grandparent’s Guide to Autism Spectrum Disorders by Nancy Mucklow. My thought is that everyone – autism families, autism friends, autism professionals, the general public – can benefit greatly from this easy-to-read, easy-to-apply-to-your-own-life guide.

I love the book’s upbeat, encouraging, hope-filled tone – a tone that permeates even the book’s attention to the most challenging and disheartening aspects of autism. And I love the book’s theme of practicality – the constant message that problems and challenges can’t always be solved right now: “Sometimes the right thing to do is to just let it go,” and “Some issues can wait for another day.”

Susan J. Moreno, CEO and founder, OASIS@MAAP says this: “This is a must-read for grandparents, their children, and all teachers, counselors and support staff who work with individuals on the autism spectrum. All levels of functioning and a cornucopia of circumstances are addressed.”

A challenge for any book on autism is how to organize it. Nancy Mucklow has organized this book in a wonderfully engaging and readable manner. There are nine chapters, but the book’s organizational brilliance is in its four categories of materials that are sprinkled throughout.

One category is short autism stories that illustrate certain areas. For example, the book’s first page tells how three-year-old Leisa’s grandparents reacted to Leisa’s diagnosis and began their interaction with her.

Another category is called “Quick Tips,” such as “Quick Tips for Dealing with a Meltdown.” I’ve found every Quick Tip in the book not only helpful, but also revealing of the author’s deep understanding and personal experience. (She’s an autism grandparent herself.)

A third category isn’t named, but I’ll call it “Boxed Information.” Sprinkled in appropriate places throughout the book are boxes containing special information with titles such as, “How to Respond to Friends who say ‘What’s Wrong with Him?’” or “What If You Don’t Agree With What the Parents Are Doing.” I love some of the guidance in this specific box, such as, “Remember that the parents are doing this for the first time too, so your support will be much appreciated,” and “Your job is to support their decisions and make the child’s life as calm and happy as possible.”

And the fourth category is one that I simply call “Charts.” For example, there is an annotated chart that lists all of the senses (taste, touch, vision, etc.) and lists the various ways that a child with ASD may either seek or avoid each sense. Another example is a chart that’s titled, “Common Communication Challenges In Children With ASD,” that lists and describes the causes and emanations of those challenges.

I’ve found a great way to enhance the book’s benefit to me. I’ve highlighted everything that relates to my situation. For example, Angelina doesn’t have depression or pessimism, so the part of the book that deals with that isn’t highlighted. But the book’s box entitled, “The Ten-Minute Tidy-Up,” is highlighted.

And finally, the book offers an analogy that can possibly be beneficial for everyone’s overall understanding of autism: autism is a cat living in a dog’s world. (At least for everyone who is familiar with the ways that dogs and cats see and relate to the world.)

I bought my copy on Amazon for $18.55.

Financial Provisions for Our Grandchildren

[Ian Patrick is not only a financial advisor and Certified Financial Planner® with Merrill Lynch, but also a friend who has donated his expertise to help me with a variety of philanthropic projects over the years. He is now helping again by writing the following article that provides basic information on how we autism grandparents can provide long-term financial support for our grandchildren. – John Bryan, Coordinator, Autism Grandparents Club]

If you are a grandparent of an autistic child, you may be wondering how you can help provide for your grandchild financially over the long term. There are many approaches you can take to address this need, each offering you a different level of control of the funds and varying tax implications for you and your beneficiaries. Keep in mind that some decisions may be irreversible, so it’s important to seek legal advice, tax advice, and talk to a financial professional (preferably one who holds a Certified Financial Planner (CFP®) designation) to understand the pros and cons before you take action. Below are some broad ideas to get you started.

Assuming the grandchild is a minor, you can establish a joint bank or investment account with them or open a custodial account for their benefit and gift up to $15,000 in 2020 without triggering the gift tax. If you open a custodial account, make sure to set up a successor custodian in case something happens to you. As an alternative, you can gift money to the child’s parents, but by doing so you will give up control of how the funds are spent. Even if you gift money directly to a minor, his or her parent would control the use of the child’s money until they reach age of majority (this varies by state). Since your grandchild has special needs, the parent may control these assets even beyond this age if the recipient is not capable of managing their own affairs and has a conservator.

Another simple way to gift assets to your grandchildren is through your will. This will be subject to estate tax rules, and most people will be able to make this gift tax-free. However there still remains a question regarding who is going to manage the money and how it is spent.

A trust is a different method that can give you control over how and when the money is used, even after you die. There are many types of trusts and a “special needs trust” is a popular route for many people. By using a trust, you can control the money as long as you are able and then assign a person or institution (like a bank or trust company) to manage the funds based on the directions you make when you set up the trust. This is a great way for you to control how your gift is spent over your grandchild’s life, long after you are no longer here to oversee it yourself. Trusts can be funded gradually over time or as a lump sum, and the money in the trust can be invested in securities or used to purchase insurance (for example, to provide money when you or their parents die).

In addition to financial assets, you may wish to give your grandchild (directly or via a trust) a home to live in, furniture and other things to make their lives easier. As with financial assets, it will be important to think about how the property will be maintained, and by whom, and how the cost will be managed over your grandchild’s lifetime. It’s a lot to consider and every situation is as unique as your grandson or granddaughter.

[The final sentence is key: “. . . every situation is as unique as your grandson or granddaughter.” We autism grandparents will want personal financial advisors who are trained to understand and evaluate our unique situations and then suggest appropriate financial planning options. – John Bryan]

Our Common Situations, Needs, and Importance

We autism grandparents sometimes feel like nobody else has the same challenges and family dynamics as us – that our situations are unique and nobody else can really understand. Of course our feelings are technically accurate in that each grandchild with autism is unique – and thus our own situation is unique. But there is knowledge and research about autism grandparents that can be helpful to all of us as we try to understand and make the best of our personal situations.

Dr. Jennifer Hillman has published several scholarly research articles about autism grandparents – all of which amplify the importance of autism grandparents. Following are 20 takeaways from her June 2007 article entitled, “GRANDPARENTS OF CHILDREN WITH AUTISM; A REVIEW WITH RECOMMENDATIONS FOR EDUCATION, PRACTICE, AND POLICY.” Even though the article is now 13 years old, it continues to be poignant and valuable. The article, which can be found via Google, sites dozens of research sources from which Dr. Hillman derives her information.

1. “One in 166 grandparents will become grandparent to a child with autism.” (That number is likely much greater now in 2020.)
   

2. Autism “grandparents hurt twice: once for their child and once for their grandchild.”
   

3. “It is important to discuss grandparents of children with autism as a unique population in relation to grandparents of children with other disabilities.” They are subject to “a unique series of stressors. These stressors include behavioral problems, difficulties in communication social isolation and stigma, difficulties in obtaining and implementing treatment, concomitant medical problems, problems in sustaining employment, financial burden, and an unclear prognosis.”
   

4. “The difficulties in communication inherent in autism can lead parents and grandparents to experience sadness, frustration, and disillusionment.”
   

5. “Families have reported significant difficulty in initiating and sustaining ABA programs and in obtaining appropriate services from both early intervention and school systems. Estimates suggest that less than 10% of all children with autism receive appropriate treatment.”
   

6. “Parents of children with autism report higher levels of stress than parents of children with mental retardation, Down’s Syndrome, and cerebral palsy. Additional findings suggest that up to two thirds of mothers of autistic children suffer from depression.”
   

7. “Another significant source of stress is that the long-term prognosis for autism remains unclear. Current reviews suggest that nearly half of all adolescents and young adults with autism suffer from anxiety or depression, with approximately only 15% possessing the skills to live independently.”
   

8. “Grandparents engage in a variety of activities that provide both emotional and instrumental, or practical, support to parents of children with autism. Emotionally supportive activities include listening and providing empathy and friendship.”
   

9. “Maternal grandmothers receive highest ratings and reports of satisfaction [regarding their support] from both mothers and fathers.”
   

10. “Close mother-daughter relationships have been associated with reduced parental stress.”
    

11. “Specific areas of conflict [between parents and grandparents] may include disagreement over treatment or discipline for a child’s behavioral problems.”
    

12. “A lack of knowledge about a child’s diagnosis and symptoms appears related to a state of role confusion among grandparents of children with autism.”
    

13. “Research suggests that grandparents who maintain limited involvement with disabled grandchildren do so in response to poor relationships and previous conflict with their adult children, rather than their grandchild’s disability per se.”
    

14. “Although custodial grandparents in general appear to be a diverse group, they also share a common need for social support. Obtaining support through social service agencies and support groups can serve as a buffer for grandparental caregivers who must cope with a disabled child’s health care or behavioral problems.”
    

15. "Because various studies suggest that nearly half of adolescents and young adults with autism suffer from anxiety and depression, positive interactions with grandparents could provide essential support.”
    

16. “Educational needs [for autism grandparents] include the design of curriculums and programs that will help grandparents explore and define their role as grandparents of a child with autism. Grandparents also need accurate information about the symptoms and treatment of autism.”
    

17. “Limited knowledge about a child’s disability can hamper grandparental involvement. . . . Open, guided communication between parents and grandparents to mutually define grandparental responsibilities and roles would be desirable.”
    

18. “. . . encourage grandparents to join support groups . . . The benefits appear great.”
    

19. “Life planning is another essential area . . . particularly for custodial grandparents . . . Talking openly between parents and grandparents about custodial arrangements in the event of a caregiver’s untimely death can also be challenging but critically important aspect of life planning.”
    

20. “ . . . few social workers engage grandparents in their work with autistic children, and nearly half expressed no interest in learning more about ways to incorporate grandparents into diagnosis or treatment. This apparent stigma or reluctance among professionals to learn about autism as it relates to grandparents must be challenged and rectified in order for all family members, including grandparents, to receive appropriate and effective help.”

One thing we grandparents can continually do that will be helpful to our grandchildren and their families is to learn more and more about autism and about autism’s relationship to grandparents. Dr. Jennifer Hillman has written several articles about this, and each can be helpful to us.