Current Challenges Faced By Texan Autistic Adults

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A Call To Action For Comprehensive Support.

Dear Government,

People with autism don’t “age out” of having autism at 18 years old. So, why do they “age out” of your support & resources?

Signed,

A frustrated advocate, a silenced disability service worker, sister to an adult with ASD & fellow neurodivergent.

The Post-High School Transition

Autistic adults such as my brother, often find themselves facing a harsh reality upon graduating high school. This is a reality our family continues to seek solutions for to this day. For someone who loves a routine and thrives in socialization, I can only imagine what it must have felt like for him to have his support system and social life upended immediately after graduating high school, and in the middle of an isolative pandemic.

What I do know, is that for families scrambling for support, it feels like screaming into a void just to get your loved one the support they truly deserve.

After moving to a big city with ample resources in his teens, my brother thrived in the support that allowed him to finally develop strong friendships, cultivate his social skills, and grow his knowledge. He was with friends on weekends, constantly chatting up buddies on the phone, had less anxiety, better sleep hygiene, began working, and improved overall mental health.

This was night and day from the recluse wary of leaving the house that he used to be in our small hometown. Back then it was the happiest I’d ever seen him.

Upon graduating high school, things shifted for Jayden and us as his family. The volunteer organizations he used to lean on for social support had few offerings for autistic adults, so his social life began to dwindle.

The educational support he was once accustomed to subsided after graduation. He was placed on a waitlist for job skills coaching and placement…a long one. Time after time, he would be assigned a coach only to receive another soon after, placing him back at square one in his occupational endeavors.

His confidence started to decline, his social skills regressed, and his anxiety returned with sleeplessness. It was heartbreaking to watch, and I’m sure even more so to feel.

Even having a SPED teacher parent and other family members in the field didn’t shield us from the staggering lack of resources for autistic adults.

Ongoing Highs & Lows

Luckily, nowadays my brother has been able to recover some by successfully holding down his first job a few years ago and sharpening his knowledge through online educational programs. Unfortunately, socialization opportunities and finding consistent resources for him in adulthood continue to be a barrier. He still deserves much more of a social life, support, and equal opportunity.

Adults with ASD & their loved ones face a hopelessness that needs more attention. Where are the resources?

Individuals with autism are faced with a unique and unnecessarily difficult transition into adulthood. Resources and funding for special education and supportive services for children with autism are known to be in a national shortage due to the demand far superseding the supply. However, autistic adults somehow face an even greater hurdle.

Autism Support Deficits In Texas

In Texas, there’s an active shortage of behavioral intervention support for our youth with autism in classrooms, as the field faces an ever-growing lack of specialized professionals. The waitlist for families interested in supports such as play therapy or ABA (applied behavior analysis) therapy for children with autism, and other various related forms of in-home support are often looking down the lines of a waiting list of over 6 months.

As of this moment, the wait list for the Texas Home & Community Based Services (HCS) program for people with disabilities is over 100,000 names long & people have been known to wait on that list for a decade. Yes, a decade.

The truth is, we can’t exactly blame the field professionals. Job coaches, educators, trainers, therapists, advocates, caregivers, and the like are also inundated.

Rates of burnout and high turnover, coupled with the dwindling amount of specialized providers entering the field spell long hours, unmanageable caseloads, low pay, team shortages, and poor provider mental health.

This inevitably leads to burnout and an ongoing cycle of a lack of support and resources for the community.

Where, oh where, is the governmental support when helpers become desperate for help themselves in addressing this crisis?

The only place left to look for change is our governmental system that allocates funding to the very public, non-profit, educational, and volunteer resources relied on by the autism community.

Widespread Barriers to Autism Support

Paradoxically, volunteer organizations centered on connecting children with ASD and their families also typically find themselves overwhelmed by a volunteer shortage. Social and support groups for adults with ASD are also limited, along with the availability of health professionals specialized in supporting this adult population.

Continuing education opportunities for adults with autism across the spectrum remain scarce. Typically, institutes of higher education have a disability services office, but no programs tailored to individuals with intellectual disabilities. While some adults with ASD do not require tailored programming to pursue higher education, a large enough number of adults with ASD aspiring to cultivate their careers through continuing education do.

Additionally, not all companies openly employ individuals with autism, and not every person with autism can work just anywhere. Programs for developing job and life skills face the same waitlist woes as their therapeutic and educational support counterparts.

Currently, there are about 6 million adults with autism in the United States. Nearly 65% of these individuals are unemployed. However, this is not due to a lack of interest, motivation, or capability to maintain a job.

In fact, over half of 25-year-old adults with autism have never had the opportunity to work in their lives even though they have the background and skills to excel in their desired workplace.

Despite this data, there are limits to people with autism receiving financial support. Programs such as Supplemental Security Income (SSI) and Medicaid have requirements that do not allow people with ASD assets above $2,000, thus stifling their financial independence.

Affordability & accessibility of all resources continues to be a primary barrier for autistic adults & their families.

Community Education Gaps

There is progress to be made by educating the community on what and how to access the resources that are readily available for autistic adults.

For example, financial literacy education on topics such as the need to seek out inclusive employers that offer ABLE Accounts within their benefits packages can make an impactful difference for autistic adults and their families. After all, ABLE Accounts allow employees with ASD to accumulate up to $10,000 in their ABLE Account without consequence to their SSI. Depending on their home state, such accounts also allow up to $500,000 without consequences to Medicaid coverage.

Helpful financial information that can benefit those with ASD is seldom commonly known.

There’s a unique need for specified financial literacy in the autism community that needs to be filled.

Conclusion

This outright lack of support has many more implications outside financial, educational, and social life struggles for adults with ASD. Most importantly, the deficit has taken a toll on the mental health of adults with autism, as rates of depression and anxiety within this underserved group have only increased over the recent years.