The Unique Joys And Challenges Of Parenting A Neurodivergent Young Adult

November is the month where having an “attitude of gratitude” is promoted. For parents of neurodivergent young adults, it can be challenging at times to feel gratitude. There can be moments of feeling overwhelmed and time spent wishing life could be easier for your child. But parenting a neurodivergent young adult can bring its own unique benefits. There are friendships created with other parents on a similar journey who truly understand your path in life. There can be the discovery of having a voice as the need to advocate for your child can be vital. And perhaps there is the gift of a better understanding of others. Parenting a neurodivergent young adult may not be a chosen path but it has its own unique beauty.

Joining a parent support group is a wonderful resource for parents of neurodivergent young adults as it can be comforting to talk with fellow parents who are on the same journey. I facilitate our bi-monthly parent support group meetings and I find our meetings to be uplifting and inspiring. Recently I had a conversation with Heidi, a member of our group since March 2020 and we talked about her experience as a mom raising a child on the autism spectrum.

Q: Hi Heidi! Thank you for talking with me and answering some questions. To begin, before becoming a parent, were you familiar with autism? Did you have any friends who had children with autism?

A: I knew a little about autism from my graduate studies in marriage and family therapy but I did not have any personal friends or family members with autism.

Q: How old was your daughter when she was diagnosed and how did you feel about receiving her diagnosis?

A: We noticed that my daughter had developmental delays when she was quite young.  She was not meeting her milestones and the pediatrician suggested we have her evaluated at around six months of age. Fortunately, she received services from the Regional Center as part of their Early Intervention program up until she was three. She received speech therapy, physical therapy, occupational therapy, and vision therapy in our home and was closely monitored by her pediatrician. 

We felt very supported with our team of caring people working hard to help our daughter progress toward her goals.  She was diagnosed with ADHD in 3rd grade, and continued receiving services from the school district to help with learning disabilities/ADHD. She had an IEP throughout her years in school and graduated with a high school diploma.  We are incredibly proud of her!  We sought an autism diagnosis when she was 16, knowing that certain college programs and work opportunities would be available to her as someone on the autism spectrum. She was evaluated by the Autism Institute at UC Santa Barbara, and they seemed confident that with the proper support and accommodations, she would be able to reach her life goals as an adult.

Q: Did you have a support system when your daughter was young?

A: We had a team of very supportive professionals from multiple agencies supporting our family. Some of these agencies included Tri-Counties Regional Center, Easter Seals, Foundation for the Junior Blind, and Saratoga Clinic. I also received a lot of support from a group of moms I met at the hospital where my daughter was born. All of our babies were born around the same time, and in addition to getting information and resources from the hospital’s Mommy and Me program, we also walked at the beach together multiple times a week.

Q: How has your daughter’s diagnosis changed you as a person?

A: My daughter’s autism has taught me to be exceedingly patient, flexible, spontaneous, and open to new possibilities. Autism has taught me to pick my battles, and also to realize that many of the things parents agonize over are really not that important.  Autism has changed my priorities and I am now more focused on the simple pleasures in life. It has also helped me in my job working at an elementary school.  I can tell we have a lot of students on the spectrum at my school, and I am able to guide their teachers on how best to manage behaviors and help the students reach their goals.  I feel compelled to advocate for special needs’ children whenever I have the opportunity. 

Q: How do you feel about your daughter’s diagnosis now that she is an adult?

A: I have mixed feelings about my daughter’s future as an adult with autism. I have no doubt she will be able to find employment, hopefully at a job that makes her happy and fulfilled. But I have concerns about her ability to have lasting relationships, either friendships or romantic relationships. She struggles with empathy, sharing, and generosity. She tends to live life on her terms, rarely thinking about others except in a superficial way. I do not feel that she has the interpersonal skills to sustain a long-term relationship. I get solace from knowing that her diagnosis will allow her to receive support for the rest of her life.  

Q: What aspect of parenting a young adult with autism do you find the most challenging?

A: One of the most challenging parts of parenting our daughter is feeling like she lives in an alternate reality. She honestly thinks that she can get any job she wants, buy any house she wants, and go to any college she wants. She doesn’t really understand the reality of situations much of the time. She can focus on the task at hand but has a hard time thinking about the future. She is stubbornly independent, and does not like accepting help from others. I’m not sure if these characteristics are associated with her autism or simply her personality traits, but they are very challenging.

Q: During November, and the holiday season, there is a lot of talk about gratitude. How do you feel about gratitude in respect to your experience as a parent of neurodivergent young adult?

A: I am grateful to be raising a young woman on the spectrum. When people meet my daughter, they can instantly tell she is different, but in so many positive ways. They pick up on how passionate she is about music and film, they see how positive she is, always with a smile on her face. Her Boss at work sees that she is never late to work, and never calls in sick- her attendance record is stellar. She loves to wear elaborate costumes every Halloween, sings and dances all the time, and has shown leadership qualities recently in group settings. She also has a good sense of humor.

I am also grateful for all the lessons she has taught me.  When I get on her case about wearing mismatched clothes, or not combing her hair, she says “Mom, people shouldn’t judge me based on my appearance- they should judge me based on my heart.”  She is absolutely right. In addition, her lack of filters provides me with brutal honesty sometimes. It keeps me accountable. 

Q: What has your experience been like as a member of our Advance LA Parent Support Group?

A: I have really enjoyed our online meetings. It is amazing to hear about how different everyone’s experiences have been, raising our neurodivergent young adults. We all struggle with many of the same issues, and it feels good to know I am not the only one having a hard time or worrying about the future.  It is wonderful when we can share resources, and celebrate each other’s wins. You are absolutely the best moderator I could ask for, always supportive and compassionate and very professional. You are good at making everyone feel welcome, and creating bridges between families that need support.

Q: Thank you Heidi, that is so lovely of you to say! Our parent group is so warm and welcoming. It is such a wonderful safe space for resources, support, information, and friendship. And it has been my pleasure to get to know you over these past few years together. I so appreciate all that you bring to our meetings and thank you for sharing your parenting story with me.

 If you would like to join our Advance LA Parent Support Group, please email me at: [email protected]