By: Bonnie Miller Rubin

Fall is the season for launching new TV series, movies, and books — and the FASD world is no different.  Three authors — with vastly different focuses — have added to the knowledge base, helping parents, teachers, and clinicians learn more about how to navigate this under-diagnosed and misunderstood disability.

Natalie Novick Brown, PhD
Seattle, Washington
“Evaluating Fetal Alcohol Spectrum Disorders in the Forensic Context”

Dr. Natalie Novick Brown, a psychologist with a national forensic practice, has brought together some of the best minds in FASD in one authoritative book to help legal and mental health professionals advocate for their clients in trouble with the law.

Some of the names will be familiar to the FASD community.  There’s Larry Burd at the North Dakota Fetal Alcohol Syndrome Center on prevalence and screening, Douglas Waite, a developmental pediatrician in New York, providing alternatives to detention in the juvenile justice system and Richard Adler, a psychiatrist at the University of Washington on neuroimaging (helpful when you can’t get a confirmation of prenatal exposure from the birth mother).

Here’s Brown on FASD and legal proceedings:

Q: Let’s start with something very basic: How does FASD interact with the legal system?

Prenatal exposure that causes FASD means that the individual is born with significant impairment affecting cognitive and adaptive functioning across the lifespan . . . The brain area that seems especially sensitive is the frontal lobes — the only area capable of conscious thinking.  When those areas are affected. you have very poor control over thinking and behavior.

Q: How do parents find lawyers with the experience to address the complexities of FASD to represent their child in criminal court?

One of the best sources is Kay Kelly [legal issues research coordinator] at the Fetal Alcohol and Drug Unit (FADU) at the University of Washington.  She is very familiar with that network.  There’s also a resource manual that’s about to be published, which should be an incredible resource both for providers and professionals.

Billy Edwards [deputy public defender in Los Angeles] also has his finger on the provider network.  Karen Steele [attorney in Salem, Oregon], who did the legal chapter in my book knows trial attorneys and post-conviction attorneys.

If I was a parent looking to find mental health professionals who are trained to assess and treat FASD, the first place I’d go is to the nearest university-affiliated diagnostic clinic.

Q: How do parents access the financial resources that are required to deal with lifetime issues?

This is so dependent on individual situations.  In Washington, we have resources available through Developmental Disability Administration…if someone qualifies, they get everything, including residential services when they reach 18.

Q: What makes this book relevant now?

From the epidemiological studies I’ve read, we’re finding far more affected individuals than we thought 20 years ago.  In the foster and adoption worlds, the rates go up to nearly 20 percent . . . and if there’s drug use on top of alcohol it exacerbates the brain damage.

Typically, it’s drug abuse that gets all the attention and providers ignore the alcohol.  What they don’t realize is that it’s extremely rare for women to use drugs and not alcohol.  In fact, in my 25 years I’ve never encountered a birth mom who did drugs who didn’t also drink.

Q: How did you recruit all these clinical and forensic experts to write a chapter for you?

I really didn’t need to do any arm-twisting.  Chapter authors were so aware of the need for a book like this that they welcomed the opportunity to contribute.  In fact, no one that I asked turned me down.

Melissa Jacobus
Atlanta, Georgia
“The Accomplice”

Jacobus is the mom of four children, now in their late 20s and early 30s, all adopted from Russia.  If anyone checks all the boxes for the devastating effects of FASD on family life, it would be Melissa Jacobus.  Missing child? Police involvement? Financial exploitation? Check, check and check.

Jacobus takes you along on every parent’s worst nightmare, from confronting a bank manager about how a “friend” could drain her daughter’s bank account to searching for her in a sketchy neighborhood.  Here’s what she had to say:

Q: What prompted you to write the book?

I wrote it to help others . . . I felt like something had to be done for my children and for everyone who lives with this disability. It’s for those impacted directly and their caregivers so they aren’t alone.

Q: Who does “The Accomplice” refer to?

The title refers to society’s ignorance.  It’s a call to action to acknowledge FASD for what it is — a developmental disability that affects millions.

Q: What advice would you give to parents just starting the FASD journey?

Trust your instinct and seek early intervention.  No matter what anybody says, you have to keep fighting to get the services you need.

Q: Any other parenting tips?

Whenever I had to remove something that wasn’t good for them — like a gaming system — I would replace it with something else.  So, when I had to remove the X-box, I replaced it with a ping pong table.  We also spent a lot of time outdoors together.  You have to find the fun.

Q: With so many teachers in the dark about FASD, how were you able to navigate school?

I did everything — public school, private school and home-school, depending on my kids’ needs at the time.  I wrote my own IEPs, which I got from Canada.  For the most part, the schools tried to accommodate.  I fed [educators] the information and they’d immerse themselves in it because they weren’t getting it from anyone else.  I had one or two who said I was making this stuff up, so I didn’t waste my time on the people who didn’t get it.  Hang on to those who are willing to learn — and that’s where you will get your strength and your hope to keep on going.

Q: Some of your most harrowing experiences happened more than a decade ago. How did you remember everything?

I kept meticulous notes on everything I was going through with my kids — every event that was happening — and I was living through hell.  Friends kept saying ‘You’ve got to tell your story.’  Some of my kids also encouraged me to write.  It was a 6-year labor of advocacy.

Q: How were you able to stick with it? Once our children are no longer minors, many parents say, ‘I’m done.’

You just keep going.  My faith is so strong that I’m just not going to give up.

Basically, I’m annoyingly relentless…and my kids are worth it.

Susan D. Rich,  MD, MPH, DFAPA
Potomac, Maryland
“The Silent Epidemic: A Child Psychiatrist’s Journey Beyond Death Row”

Since the early ‘90s Susan Rich has been immersed in FASD — both academically and in her practice as a child and adolescent psychiatrist.

In addition to her medical and public health credentials, she is the founder of a non-profit,  7^th Generation Foundation, Inc., designed to inspire healthy lifestyles, inclusion and animal welfare through green-farming for youth with FASD and other neuro-developmental conditions.

While her book came out in 2016, she started working with a company this year to turn it into a documentary, hoping to reach an even wider audience.  She weighed in on raising awareness:

Q: How did you get started in this field?

I had been researching and understanding FASD since my mid-20s.  I was aghast that we hadn’t been taught anything about this in school.  If you think anyone would be taught, it would be those studying microbiology.  Then, in the early ‘90s, I read “The Broken Cord” [Michael Dorris’ story of his adopted son, born with FASD].  All those years ago, I realized it was important to get the word out to policymakers and those in the health care industry.

Q: Why did you do your master’s thesis on the prevalence of prenatal alcohol exposure in the criminal justice system?

That was back in 2012 and the connection seemed so obvious that I was sure someone was going to publish this before me.  Every public health and social malady — such as homelessness and teen pregnancy — is happening to these individuals.  We have not done a good job of putting systems of care in place in every state and every community.  People think it’s about adverse childhood experiences instead of seeing the underlying neuro-developmental issues.

Q: Can you give an example of a system of care failure?

Sure.  When kids are identified and are doing well because they have IEPs [Individualized Education Plans].  But because they are doing well, their IEPs are dropped.  Now they can’t do all the things teachers are asking of them, so they either come home and emotionally vomit all over their families…or are so frustrated they emotionally vomit all over their teachers.  Which is why it’s so important that we get serious about providing care and services.

Q: In your research, what was one of the most egregious examples of adults not understanding the underlying neuro developmental issues?

One school  in Montgomery County, Maryland, called a SWAT team on a 5-year-old.  When the teacher kept prompting him for an answer, he hid under the teacher’s desk and [the adults] cleared the classroom.  Everyone was traumatized . . . and we have 63,000 of those affected individuals under 18 in Maryland alone.  Despite the efforts of the CDC, NOFAS and the NIAA, the public remains blind and deaf to the problem, which is why we need the Respect Act.

Q: What do you wish people knew?

That if they’re sexually active and consuming alcohol, they need to have reliable contraception.

Bonnie Miller Rubin is a writer, editor, speaker, and strategist who provides and curates content for a variety of platforms. She is a regular contributor to the Wall Street Journal. As a Chicago Tribune reporter for 25 years she specialized in health and family issues, covering stories on marginalized populations including FASD.

The views and opinions expressed in the publications featured in this article are solely those of the authors and do not necessarily represent the beliefs and opinions of NOFAS, its staff, or other contributors to NOFAS.org.