Many grandparents wonder how they can enrich their grandchildren’s lives. Some of us have the gift of time and/or resources to explore and encourage extracurricular activities, hobbies or interests with them. This GAN grandmother shares how her early support for her grandson has resulted in him achieving many rewards and lifetime skills.

I felt so fortunate when I learned that I would be a grandmother again, and this time, “a double pleasure!” My granddaughter and grandson twins were born healthy and at good birth weights. When my grandson was 18 months old, his parents became concerned about his lack of eye contact, slow speech development and his repetitive behaviors. Loud noises especially distressed him. They sought professional help and he was diagnosed with autism. My grandson received many therapies and great family support from his twin sister and his parents. I questioned how I might also help.

When he was six years old, I searched for and found a local golf instructor who could understand my grandson’s special needs. He met my grandson and agreed to enroll him in his golf clinics. I drove my grandson to and from his lessons and supported them for several years. After every clinic, we would have lunch, enjoying his favorite “awesome hot dogs” together.

When my grandson’s family moved to another state, he continued his golf lessons and also engaged in team play. During the pandemic, he spent a lot of time on the golf course. As a freshman in high school, he qualified for the varsity team. Now at age 16, he recently made his first hole-in-one and he won the city golf championship in the 16-18 age category. While he now has many awards, the one I most admire is for his “Good Sportsmanship and Love of the Game.”

On his way to winning these awards, my grandson has acquired many skills. He has increased his social engagement and improved his physical coordination. but most important, he is now confident that he can achieve any lifetime goals he sets.

The only regret we have is due to the geographical distance that separates us, we both miss sharing those “awesome hot dogs” together!

Grandparents sometimes have difficult family relationships with the parents of their grandchildren. The following information was submitted by a GAN member who had developed a warm and loving relationship with her grandson from the time he was diagnosed as a child. She had him sleep over and took him on trips and excursions throughout his childhood, enabling his mother to have respite time on most weekends.  When he became an adult, his mother became his conservator and relocated him in housing outside of her home. The following information was submitted by his grandmother in order to offer other grandparents information and options that may be helpful in navigating a similar situation.

I want to see my grandchild ….

It is frustrating and heartbreaking when someone tries to keep you from seeing your grandchild.

Once your grandchildren become 18, a lot changes. While they were minors, their parents had more-or-less absolute control over everything. After 18, typically, the parents secure conservatorship over them. A Limited Conservatorship may be granted by the courts.

A limited conservatorship is not “complete control over everything.” The court evaluates the person who will be conserved, and tries to grant the least-restrictive control possible. States may define these differently. One right that is seldom granted to the conservator is the right to control/limit/restrict social contacts. The first thing you want to know, if you are having issues seeing your grandchildren, is whether the right to determine social contacts has been granted to the conservator. In the unlikely case that the conservator does have the right to restrict social contacts, your only choices are to try and change their minds, or try to build a case in court, with a lawyer.

In California the court requires the conservator to distribute copies of the conservatorship papers to close relatives of the conserved person – this generally includes non-custodial parents, grandparents and siblings. The conservatorship papers outline the areas where the conservator controls the rights of the conserved person. You will want to have copies. If you do not have them, you may be able to get them from the courts (you will likely have to pay for copies).

The conservatorship papers also include the address of the conserved person. What if you haven’t received copies or cannot get copies from the court? What if you don’t know where your grandchild lives? Here is the bad news: You have to find a lawyer to plead a case. And that costs money.

If the court has not granted the right to manage social contacts to the parent, then your grandchild has the right to choose to see you. But it is their right, not yours. If you attempt to make contact, and your grandchild does not want to see or talk to you, then no court in the world will order your grandchild to see you. (If your grandchild wants to see you, but lives with their parents, there may be other issues, such as trespass, involved.)

Your grandchild also has the right to receive unopened mail. So, if you cannot go to visit your grandchild and if you do have an address, I suggest you frequently send them mail – any mail.  Send something that will appeal to them: the comics from the Sunday paper; a book or magazine that you know will engage them; a note or greeting card from you. Include pictures of you and of you with them, if you have those. Include your contact information: your phone number, your email, your Facebook ID.  Do not try to convince them to see you if they have resisted. Just make sure they have the information. Every once in a while, send a note that says something like, “We are planning to go to the zoo, and would love it if you could come with us.”  And then … just wait.

You can also stop by to drop something off and ask if they will see you.

They should have access to a phone – call them or use FaceTime, or ZOOM, etc. They do not have to take your call, of course.

If you do have personal access to them, see them frequently; take them places they like (the park, the library, a baseball game, a movie). Keep records of the contact you make with them, the things you do, etc. This could possibly be useful if you do end up in court to demonstrate your consistent involvement in your grandchild’s life, including the time before they turned 18.

Before you go to court, you may want to do what you can to try and convince the parent/conservator that your involvement in your grandchild’s life is a positive thing, both for them and your grandchild. If the parents are the conservators, you might suggest that you are offering them “respite support” by taking your grandchild. Be flexible and try to allow them to actually get a break.

If there are restrictions (dietary, geographic, etc.) that are imposed, try to respect that and ask why those restrictions are in place. This is a fine line; what if your grandchild asks for a hot dog, and the parents have a strict, “No Hot Dogs” rule? If there is not an underlying medical reason, you may be tempted … but … is this a confrontation you want to have? My personal recommendation is that you never do anything like give the grandchild the hot dog and tell them not to tell their parents!

BE persistent. Be positive. Be non-confrontational. Be present in any way you can!

Do not expect any thanks or acknowledgements from your grandchildren or their parents. Take what comes your way joyfully and always remember you are doing this for them. The give-and-take of a neurotypical “social contract” does not exist in this universe. Our grandchildren are precious beings who deserve all that we can do for them. Just keep doing anything you can to keep some kind of contact going.

By Bonnie Malkin Gillman, Founder

Because children with autism require more attention, therapies and support, the needs of their brothers and sisters are frequently overlooked.  Siblings share many of the same concerns their parents have regarding social isolation, the need for information and they worry about the caregiving expectations their parents have for them in the future.  Sometimes, they feel resentment, embarrassment and under great pressure to achieve.  They are frequently in the waiting room when “family centered” counseling and services are offered and are overlooked by support agencies.

Here are some ways you can help them:

• Plan to spend special time with siblings and be a good listener.  If you provide a safe, comfortable environment, they may express their concerns to you.
• When siblings argue, try to remember that typically developing children deserve a life where they, like other children, sometimes misbehave get angry and fight.  Try not to intervene with statements like “Leave your brother alone.  You are bigger, you are stronger, you should know better.  It is your job to compromise.”  They are already more likely to feel guilty about their sibling’s developmental needs and most siblings have disagreements from time to time.
• Siblings deserve to have their own personal safety given as much as their brother or sister who has special needs.  If they are in vulnerable situations due to aggressive or challenging behaviors, try to provide as much respite time as possible for them.  If possible, plan activities that will keep them apart and enable you to give your full attention to only one of them at a time.
• Offer to care for your grandchild with autism so that his/her parents can spend personal time away with their sibling(s).  It will convey the message that parents are supportive of all of their children and afford them the opportunity to communicate about their concerns.
• Important to Remember:  One child’s special needs should not overshadow another’s achievements and milestones.  Celebrate and reinforce the accomplishments of all of your grandchildren.

You may find more information about sibling support groups by calling your local children’s hospital or go online to these sites:

For All Ages: http://www.sibs.org.uk   http://www.siblingsupport.org/

For Adult Siblings: http://siblingleadership.org

When GAN became a non-profit organization in 2006, there was very little information known about autism, and nothing online to advise grandparents about how they could help their family members. GAN was established to provide evidence based information about autism to grandparents and to help them understand therapies and treatments. As more information is now available about how autism is diagnosed and treated, GAN has become more focused on providing lifetime resources for adults with autism.

At present, 90% of the financial support for people with autism is designated for children from birth to age 10 years old.  There are few adult resources, especially in newer communities, where they may not exist at all.  Grandparents can be very effective advocates in the development of new lifetime supports.  Here are some suggestions for ways in which you can advocate:

• Contact local Senators and Congressman to request more adult programs and services in your and your grandchild’s community
• Encourage community colleges to provide post-secondary or vocational education courses for people with developmental disabilities
• Help to increase employment opportunities by patronizing and complimenting businesses that already employ people with disabilities and encourage them to hire even more.
• Speak to business owners about employment opportunities for people with autism who may even have special abilities that match a job description. If possible, help to establish a business that employs people with autism.
• Advocate for or help to develop affordable residential or independent housing options for people with disabilities
• Identify and increase community medical, legal, recreational and social lifetime resources

We can become strong advocates for our grandchildren, even if they live at a distance.  Send an email, make a call or engage with a business owner when you’re dining out or shopping. It’s easy to do!

You already know that grandparents are passionate about wanting the best programs and services for their families. But… there are many things you can do everyday to advocate for families … when you’re at home – and out in the community…

When you’re at Home:

• Go online to become better informed about autism and to learn about new discoveries and treatments
• Volunteer for research studies. Some are just simple, online surveys. The Family Autism Network’s website posts local research enrollment opportunities – from a variety of universities and other local sites.
• Participate in national and international studies by signing up at the Interactive Autism Network Project – and you will find even more available online.
• Register on the Autism Speaks website for notifications about pending legislation that will affect families AND contact your political representatives about how you want them to support or not support proposed legislation.
• Send an email to encourage and thank businesses that employ people with developmental disabilities – Reach out to other companies that you patronize -or where you have contacts – to encourage them to train or hire people with disabilities.

What can you do everyday to help In the Community?

• Attend and support autism conferences, workshops and training events. The Family Autism Network website has a Calendar of local events – and The Center for Autism offers outstanding programs for families. If events are not well attended, they most likely won’t be available in the future.
• If someone with a disability helped you when you were shopping, be sure to compliment that employee. Personally thank the store manager for their hiring policy before leaving.
• Do you belong to a philanthropic group that features speakers? Contact the Center for an autism professional who can schedule a presentation on a topic of interest.
• Check to see if your local Parks & Recreation Department offers programs for people with disabilities. If not, advocate for them.
• Eating Out? – is a child having a meltdown nearby? Do the parents need help? Offer to assist them. Express empathy, not criticism.
• Consider volunteering for a local autism event. If you’re available on October 22nd, GAN can use your help at the Spooktacular Social for Adults with Autism (16 years & Older) & Their Caregivers. Not available then? Check our calendar of events for additional community volunteer opportunities.

And, finally, the most important way I believe you can help the autism community everyday is to:

Talk publically with others about autism. When people hear the “A word” – very often – even strangers will reveal that they, too, have family members, neighbors or friends with autism. Speaking openly about autism helps to eliminate the stigma associated with autism – and makes others who are affected feel less isolated.

There are simply NO LIMITS as to how you can support people with autism in our community. Your generous financial contributions tonight – and daily advocacy – will help to ensure that individuals with autism – will have a better quality of life –

… and a future with NO LIMITS!

By Alycia Halladay, PhD, Chief Science Officer, Autism Science Foundation

Males are four times more likely to be diagnosed with autism spectrum disorder (ASD) than females, but the reason why is unclear. A few years ago, a genetics study showed that females with ASD have a higher number of genetic mutations than males.¹ This finding led to the “female protective effect” hypothesis, which says that girls must have a higher number of genetic mutations in order to be diagnosed with autism. This hypothesis led investigators to compare the brains of males and females for evidence of the protective effect.

Most genetic studies look at DNA or RNA from saliva or blood. Because fewer females than males are diagnosed, fewer samples of female brain tissue are studied, and scientists understand less about females with autism. Through the resources of Autism BrainNet, Dr. Cyndi Schumann and colleagues were able to compare the brains of males and females.² Schumann’s project found a higher number of potentially harmful genetic mutations in females in a newly discovered form of genetic material called microRNA. Surprisingly, the mutations were not found in genes known to be involved in autism. Rather, they were found in genes related to immune system function.

These findings are consistent with other studies of the brains of males and females with ASD. For example, Donna Werling and Daniel Geschwind discovered that gene expression changes between males and females were not in identified autism risk genes.³ They were in genes that trim and shape neurons and control how they connect. The genes carry out these functions by regulating microglia–the major cell of the immune system in the brain.

Both studies highlight the importance of studying the human brain to understand autism. Also, the causes of the disparity in diagnosis in males and females might have more to do with the way that male and female brains work and less to do with autism risk genes. Finally, since there is a difference in the biology of autism in males and females, females may need different, specialized interventions and treatments. What is discovered in boys doesn’t necessarily reflect what is going on in girls.

Autism BrainNet is an organization that coordinates the essential aspects of ASD brain tissue research. Without Autism BrainNet, understanding the brains of females with autism would not be possible. Please consider registering to receive more information about brain tissue research and donation at www.takesbrains.org.

References:

1. Iossifov, I., O’Roak, B. J., Sanders, S. J., Ronemus, M., Krumm, N., Levy, D., … Wigler, M. (2014). The contribution of de novo coding mutations to autism spectrum disorder. Nature, 515(7526), 216–221. Abstract
2. Schumann, C. M., Sharp, F. R., Ander, B. P., & Stamova, B. (2017). Possible sexually dimorphic role of miRNA and other sncRNA in ASD brain. Molecular Autism, 8, 4. Abstract
3. Werling, D. M., & Geschwind, D. H. (2013). Understanding sex bias in autism spectrum disorder. Proceedings of the National Academy of Sciences of the United States of America, 110(13), 4868–4869. Article
4. Jacquemont, S., Coe, B. P., Hersch, M., Duyzend, M. H., Krumm, N., Bergmann, S., … Eichler, E. E. (2014). A Higher Mutational Burden in Females Supports a “Female Protective Model” in Neurodevelopmental Disorders. American Journal of Human Genetics, 94(3), 415–425. Article

Photo credit: Used with permission of family