As the idiom goes, ”Hindsight is 20/20”.
This is to inform children, teens, and college students with “2E” Level 2 Autism and/or their families regarding two problems of David’s that hopefully you can plan for and avoid:
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[1] Medical effects upon post-college income:
[A] Hidden Co-occurring Conditions
Two decades ago, when my son was a teen, people with experience working with autistic adults tried to talk me out of helping my Level 2 Autistic son reach his college dream by warning me about autism-linked mysterious medical issues “hidden during childhood”. They tried to warn me not to count on David being able to earn a living wage as a scientist, but they couldn’t back their advice with data. Research into those “hidden disabilities” wasn’t yet being funded, so I ignored their advice, chalking it up to Anti-Autism Ableism.
In the meantime, too many children and adults have been diagnosed with Autism to ignore the growing evidence that there was something to the warnings, after all. At last researchers now show initial data and analysis seeking to explain why many people at all levels of Autistic Spectrum Disorder suffer from symptoms impacting their digestion, sleep hygiene, and more. These symptoms are missed during childhood, adolescence, and the college years, but worsen over time. The second paragraph of the following article from “Autism Parenting Magazine” states that:
"Short term symptoms may be negligible, but long-term consequences may be life altering”.
That sentence sums up David’s employment story. His college plan was, in part, structured on the hopes held in earning his college degrees. His life was altered by the worsening of his undiagnosed hidden disabilities.
Why did this happen?
How did parents of Autistic children - as well as Autistic adult self advocates themselves - not know much sooner about the all-important connection between gut microbiome and the brain? That connection impacts everyone, but for Autistic people, this information is essential for SMART long term transition planning.
Why did this happen?
Because science moves slowly. Because research only gets funded when enough voices speak out demanding funds for research.
So, only recently have respected research agencies begun to study the Microbiome-Autism connection. Here’s an example: “Gastrointestinal issues and Autism Spectrum Disorder” (Madra, et al - pubmed)
It’s difficult to be patient waiting for social science and political science to catch up to new paradigms, so that medical science to catch up to meet everyone’s health needs.
And, patience is especially elusive when a loved one’s life plan is at stake. But, patient we must be. All we can do is that which I am doing right now — sharing our stories.
Warning:
If an autistic student receives certain types of financial aid, and a significant hidden diagnosis causes trouble, certain government benefits which they might need for survival after college could be lost.
I am not an attorney or a professional financial planner specializing in long term planning for adults with autism, so if you can afford it, I highly recommend consulting these professionals.
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[B] Autism’s symptoms:
"Level 2" Autism meant that, for David to earn high enough grades to receive fellowships to fund graduate school, we had to delay the “Supported Living Services” (SLS) and other community training that normally replaces college attendance.
By having me provide full time job coaching, secretarial, domestic services, errand-running, etc, David’s only job was to study. Only in this manner could he endure his long academic “workday”.
(Warning! — If your son or daughter relies upon SSI, the Student Earned Income Exclusion normally ends at age 22. However, I’m not a trained benefits specialist nor an attorney, so please consult a professional before deciding whether to follow in my ignorant footsteps).
Once college ended, I quit, so David's daytime hours were split between work, his Community “Day Program” and his SLS program. (The way most "Level 2" Autistic adults live instead of college).
This means that he can now only earn income part-time. His income's so low that he must rely upon a financial aid package of government programs to survive.
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Disclaimer:
I am not an attorney or a professional financial planner specializing in long term planning for adults with autism, so I highly recommend consulting one or both of these types of professionals.
[2] Financial:
For the reasons stated above in my own son’s story, and similar issues told by numerous other adults with “Twice Exceptionality” (Level 2 “Savant Syndrome Autism”, “High-IQ/Level 2 Autism”, etc), many adults cannot go on to earn the income that they’d hoped for during college.
No problem for the privileged few from wealthy families who inherit large trust funds. (Such as the friends in whose footsteps I followed… oops!).
If, however, you are a non-wealthy family member considering serving as your Level 2 or Level 3 son's or daughter's assistant throughout college, I recommend that you first read the following book:
"Autism Job Club", by Bernick and Holden. It contains significant statistical information regarding the problem of chronic unemployment for the majority of adults with autism regardless of college degrees.
Disclaimer:
I am not an attorney or a professional financial planner specializing in long term planning for adults with autism, so I highly recommend consulting one or both of these types of professionals.
[3] Post-college living arrangements:
Finally, before investing time and/or finances in college, please note that there is a massive crisis involving supportive living arrangements for adults with autism.
I was very “lucky” to network well, invest a lot of time, and collaborate with all the “right people” to get my son the awesome SLS-supported, affordable living arrangement he has.
At whatever stage you are in planning a long term living arrangement, I recommend the following online support, advocacy, and networking groups:
AASCEND (San Francisco in-person, but globewide online)
Parents Helping Parents (U.S. Nationwide)
Future For Our Kids (Placer County-based, but all ACRC catchment families, friends, and political allies are welcome!! 🤗)
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Disclaimer:
I am not an attorney or a professional financial planner specializing in long term planning for adults with autism, so I highly recommend consulting one or both of these types of professionals.
