Watch Out For the Possible Hidden Medical and Fiscal Costs of Pursuing the College Dream

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. 

—-

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!! 🤗)

——

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. 

The Need for a Cradle-to-Aging System for People with Autism, Another Type of DD, or ID

 

It's March -- Developmental Disabilities Awareness Month. And, a time to focus on the causes of the  nationwide crisis of Aging Adults with Intellectual and/or Developmental Disabilities Still Cared for by Senior-Age Parents. We must improve the gap between teen and adulthood; we need a cradel-to-aging system, and to create this, we must analyze where the gaps occur: Our state has invested decades of time and millions (nationwide -- billions) of dollars to fund: [1] research with a goal of "curing" autism, and,  [2] childhood special ed programs designed to "fix" behavior problems before adulthood.  Unfortunately, many of those programs are geared toward so-called "high functioning ASD" children who "show promise" to someday pass for neuro-typical with relatively minor program effort. The grants-for-public schools, and the tuition for private schools are the same amount of money regardless of whether the students have "extreme autism" or are at what was formerly known as the "aspie" end of the ASD spectrum. Therefore, it's in the interest of schools and nonprofits to design programs that teach life-skills only to low-needs  ("aspie") children, while the high-needs kids languish.  Later, because the "high-staffing-needs" students were denied an opportunity to learn self-management skills, they are in turn abandoned by the adult programs because the inappropriate conduct has become habit. So, they  stay with Mom until she dies. In the old days, Mom's death meant getting sent to the poorly supervised, overcrowded institutions where some of the low-paid staff did a mediocre job of caring for the adults.  Well-intentioned pro-inclusion values drove the goal of closing those old institutions, but where are the replacements?  Group home and SLS staff are still paid under the same old system: Regardless of whether the person they support just needs reminders or whether they require a hoyer lift to shower, the paycheck is generally minimum wage. Why take on more work for the same pay, ask the staff? So, adults are remaining with Mom until she dies, but without a replacement for her. With the exception of some adulthood-dedicated programs from the Department of Developmental Services (DDS)  that many other states don't even have, along with the CA-DOR, government programs for adulthood itself  receive barely a trickle funding compared to that provided to research and school programs. The resulting gaps are  filled by struggling nonprofits. This sends a mentally abusive message to adults with ID/DD and their families that  they're not good-enough, not worthy of investment, because their cognitive challenges proved too profound to  have been "fixed" in childhood.  Ever hear the playground bully-chant that goes, "You're too stupid to live"?  In my youth as a teacher, I was the only one punishing the bullies. The other teachers ignored this hate-filled, abusive  message, and ridiculed me. With such callousness, as high as the suicide rate is among people with disabilities,  I'm surprised it's not even higher -- a testament to their courage and inner resolve. This is why I am a member of NAMI, and I recommend ID/DD families join, too. Did anyone survive school without  some level of the "mental illness" that is post trauma stress defense? The system needs large-scale reform into a "cradle-to-aging" system in place with members of the K-12/"Special Ed"  commissions (CAC; SELPA, etc) visiting the meetings of the Commission on Aging and Adult Services, ADRC, and related agencies, and visa versa. Another key role is played by nonprofits such as Parents Helping Parents, AASCEND, my own "newbie" agency DDFP-CA, where self-advocating adults with ID, ASD, or another type of DD, or families of adults with ID/DD  can meet a trustworthy environment where they are free to express their frustrations with  "the government" who has placed their housing, supports and other needs last on national and state  budgetary priority lists for generations. My autistic son and I live in California's poorest county, but money is not as important as community commitment  on the part of not only formally elected, hired, or appointed leaders, but every single resident. We are blessed because despite having a lower budget than everyone else, we have leadership willing to listen to  the needs of struggling individuals and families, and troubleshoot to change systems so everyone has what is  needed to not only survive, but to thrive. So, wherever you are in the U.S., visit your local county's meetings of the: [1] Commission on Aging and Adult Services; [2] Board of Supervisors [3] Family Support Group meetings [4] NAMI... And more. As always, if you are in California and you or a family member has received a diagnosis on  "The Autism Spectrum" (ASD),  seek help from the Regional Center that serves your county. Here's that link: Regional Centers ReplyForward

Recommendation regarding investing in grad school during these pandemic-impacted economic times

 Hello adults with high-IQ who require 1:1 staffing, your families, and other members of your Person-Centered Planning Teams:

Before you get too excited by David's and my story, I have the following warning:

At the time that I made the tremendous investment in David's dream to pursue a PhD in experimental physics, I was, like everyone else on this planet, unaware of the impending COVID-19 pandemic, and its disastrous economic consequences. If I had been helping David through college during times as hard on autism families as we are now enduring, his "Plan C" dream of a practical associates degree from a community college in something related to software development with physics classes for fun, would have been a great accomplishment. If your family is not wealthy enough to follow in my footsteps, and you need to make a similar modification to your dream, then I strongly recommend that you avoid risking terrible debt.

Remember, David DID NOT INCUR debts. If your grade point average isn't high enough to assure scholarships and fellowships, I DO NOT RECOMMEND pursuing graduate school until after America bounces back from the economic effects of the pandemic.

With this said, science research cannot afford to continue missing out on the potential locked within the minds of high-IQ students with autism who require 1:1 staffing.

This is why I'm communicating with agencies to try to gather the funds for a foundation that will assist families like ours.

If you're interested in joining me in this important, globally-significant discussion, please leave a comment below, or email me at:

ddfp.planning @ gmail (dot) com

This Holiday Season, Please Support Owners of Businesses with Developmental Disabilities

 Hello Everyone! Happy Holidays!  🎄🎅🤶 🔯

Are you looking for a way to support disabled owners of Micro-Enterprise businesses this shopping season? Well, how about attending the: 

Micro-enterprise owners' virtual fair of Progressive Employment Concepts 

 Wednesday December 15, 2021 11:15 am - 1:00 pm. 

Shop at the event itself, or order your hand painted Christmas cards, printed t-shirts, button/magnet ornaments, canvas tote bags, crossbody cell phone bags, Christmas ornaments, gift cards for shredding services, and more! 

For the Zoom link, you can email me at:

ddfp.planning@gmail (dot) com
😇

 

Spring 2021 Update -- Autism and the "Brain-Gut-Microbiome Axis"

 ✋  Hi! I'm sorry to fall so far behind posting here. Today's post is about the role of the brain-gut-microbiome axis in autism. I recommend that every adult with autism, and every parent or guardian of an autistic child research this topic. Here's a PMC report to get you started:

Brain-Gut-Microbiome and Autism

 Science -- including medical science -- doesn't have all the answers; researchers are constantly learning, which means parents like me are constantly evaluating the mistakes we made due to lack of medical awareness back when I was a young mother of an autistic child.

Last July, in the midst of the pandemic panic, David's digestion problems progressed so dramatically that it caused him to lose a dangerous amount of weight. Via "teladoc" (video appointments), his gastroenterologist diagnosed him with "Functional Dyspepsia". This was followed up by video appointments and emailing with his dietitian, and I took over the at-home role of nutritionist specializing in menu planning for the purpose of gaining weight.

Wow! Talk about a steep learning curve! I've learned so much that  thinking about getting officially certified as a nutritionist as a secondary career. While most of America is obese and needs help losing weight, David needs help gaining it without profound digestive complications and, from what I'm reading online, so do many, many other autistic people.

So, it may surprise you to read on a blog entitled "College and Career Autism Dream" that my top advice to you is not about academics or career preparation -- it's about health! Before you plan academics, look into whether your son or daughter has hidden digestion issues that could bloom later in life. If David had been diagnosed with "functional dyspepsia" as a child, I would have created the nutrition management plan now in place, and would have prioritized his academic and life program very differently. In David's case, it's "better late than never". But in the case of your young child, you can "nip the situation in the bud early".

I wish you and your family well.

 

Three of the Ways that a "Fully Included Academic Education" Prepped David for College Success

First, for an introduction to the D.M. Nisson, PhD story, click HERE to see my blog post of June 15, 2020.

For today's post on the topic of the advantages of a "Fully Included Education", here are three of the many ways that I feel my son's inclusive education contributed to his later college success:

1. Access to an academic curriculum

Not everyone has as high an IQ as David's, but when it comes to children's brains which are still developing, we should never "judge a book by its cover", and exclude a seemingly low IQ student from access to academics. Kids' brains can change a lot between kindergarten and grade 12! Had I gone along with the public school's insistence upon denying my son an academic education based upon his superficial appearance of "a hopeless case" at age 4, he would have lacked the proper foundation in math and science to study a STEM major in college.

2. Appropriately modeled behavior

It's always important to have a least one child in every group who follows the classroom rules so the other students can witness someone being rewarded with smiles and esteem-building words of appreciation from the teacher. In a class filled mostly of children who understand classroom behavior basics, those who have disabilities challenging them in this area will learn appropriate behavior more quickly than children segregated into a classroom filled entirely with children who share behavior difficulties. My son was able to learn how to function properly in a college classroom because he was surrounded by non-disabled peers who helped the teacher teach him how to behave in his K-12 classrooms.

3. Preparation for future college and/or professional teamwork

College requires teamwork, in class and in research groups. By high school at the latest, teachers need to be noting into student "Cumulative Files" and other records the teamwork strengths and weaknesses of each student. Who are the leaders, and will someday play the roles of future Project Coordinators, CEO's, or Principal Investigators? Or, which elementary students now shining in their current roles of "getters", or of "double-checkers", will grow up to succeed as Resource Investigators, or Completers-Finishers at college and beyond. Self knowledge in teamwork awareness is absolutely crucial to success in a college level research group, and this might be the single most important gift that my son's "fully included education" provided him.

These are just a few of the ways that my son's inclusive education contributed to his dramatic college level success. In conclusion, if you are the parent of a child with a disability, I encourage you to take the steps needed for your school district, or private school, to include them in an academically-based classroom. Bear in mind, however, that 'inclusion" is a relatively new idea, and each child's needs are unique, so even the best administrators and teachers often benefit from professional inclusion guidance. Are you UK-based? If so, I recommend that you consider contacting Inclusivity Consultant, Nazia Ansari of Inclusivity Education.

Intro to the D.M. Nisson, PhD Person-Centered Planning Success Story

So, what's the big deal? Many colleges are welcoming "autistic" students into their programs, right?

What's different about the story of David M. Nisson, PhD?

Actually, the difference is quite significant!
Autism is on a spectrum, but a lot of people don't realize this. So, most of the college programs are only set up to help "ASD" students who function independently at the mild end of the spectrum (Level 1), and exclude those Level 2 and 3 students with classic autism who require protective supervision. But, that fact didn't stop me from backing my son's dream, nor did it scare off the boldly open minded team at UC Davis Physics and Astronomy.

Because most parents are unable to locate the resources to do as I did, David is the first American diagnosed by the late Dr. Darold Trefffert with aide-dependent, Level 2-3 "Savant Syndrome Autism" to earn his doctorate in physics from a top ranked United States university. I am Mary Nisson -- the mom who helped him get it done. During the years I spent at David's side while he studied at UC Davis, I recorded this blog. To begin at the beginning, scroll down to 2009 and enjoy reading!  🎓 😊

Curious how our partnership succeeded?

The key was to 

[A] Reduce David's stress level and,

[B] Keep David's genius free to focus on his schoolwork and research, by letting me "sweat the small stuff" (that is often the cause of autistic students dropping out). 

So, while David was a lower division undergrad student at the respected Cosumnes River College (CRC) in Sacramento, California, and later upper division and grad school student at the world-renowned UC Davis Department of Physics and Astronomy (UCD), 

I:

• provided him basic Protective Supervision from such dangers as cars in parking lots and chemicals in laboratories; 🚗🚗 ⚛️

• advised and troubleshooted with counselors, professors and other staff in how to accommodate David’s unusual classroom communication and health-related needs; 

• served as David’s career, academic and Social Skills Coach
• 
  
• furnished financial aid advice and FAFSA instruction, executive level Secretarial and Personal Assistance, and more. 

These were a few of the supports that I provided so that David was able to produce scientific work good enough to receive scholarships, fellowships and grants to fund his bachelors and masters degrees.  ＄＄  🎉

Ready to follow in my footsteps?

As I said earlier, even with the new Self Determination Program and Person Centered Planning, most parents won't be able to follow in my footsteps all the way to the top of "the mountain", but I hope some can at least make it partway. 

Humanity and the planet upon which we depend need us to provide profoundly disabled, IHSS-requiring students an academic curriculum to prep for college so that we can access the potential in every potential scientist’s mind!  🌎 

My books are on the way; in the meantime, head back to the posts in 2009 and start reading. And, please feel free to ask me questions in the "comment" section, or to email me at: 

ddfp.planning@ gmail (dot) com.