April 2025 ~ Autism Awareness / acceptance Month

​Hello Everyone,
 
This month’s BLOG will continue the opportunity to view my slideshow GALLERY of Books and focus on the offered Extended Book Reviews. The slideshow shows the book covers, divided into the following categories ~

     AMAZING ADVENTURES
     DIAGNOSIS, DOCTORS, DENIAL
     SAVVY SOLUTIONS
     SCHOOL ON THE SHORT BUS
 
Hopefully, these stories will help parents, clinicians, academics, and all people #Autism, in connecting with those who have gone before us on their Autism Journey. This April's 2025 BLOG will continue to give snippets of my Extended Book Reviews; find full reviews on website MENU; along with a LINK to purchase the eBook. You will find each Autism story to be engaging, compelling, and as different as each family's Autism journey.

From the Category – DIAGNOSIS, DOCTORS, DENIAL. Read my full Extended Book Review, with < My Thoughts > by Sara Luker; plus, LINKs to eBooks, on this website, www.sarasautismsite.com.

I Know You’re In There: Winning Our War Against Autism; by Marcia Hinds: eBook (2014); an Extended Review with < My Thoughts > by Sara Luker
 
Excerpts from the book – (4% indicates location in the Kindle version of the book, instead of page numbers).
 
1%    Marcia – I am an expert at only one thing and that is being Ryan’s mom.
 
Even so, I made a lot of mistakes along the way. 
I fought doctors when they were right.
I went along with snake oil salesmen when I shouldn’t have.
 
The thing I did right is that I never gave up.
 
When it comes to the treatment of autism one size does not fit all.  You must find your own path and follow it, and God help anyone who gets in your way.
 
2%     Ryan was different from other children his age.  We knew something wasn’t right.  My son was diagnosed at age four.  That day changed everything.  The doctor gave him and us a life sentence.  At first all I could do was cry.
 
We were told there was no recovery from autism.  There was no cure.  There was no hope.  But, you can’t feel sorry for yourself or your child for too long.  You don’t have time.  Your kid needs you
 
4%     Ryan wowed me with his intelligence.  I knew he was smart.  At only two, he spent hours playing computer games and could operated any piece of electronics in our house.  He knew all his letters and numbers.  Even though he couldn’t say them.
 
5%     Most of our days were spent trying to figure out what Ryan wanted or needed.
 
Nothing worked.  We were like contestants on a game show where only Ryan knew the rules.  Ryan was my second child, so I rationalized…my son would be fine in his own good time.  In my quieter moments, I wondered if it was my fault Ryan was so different.
 
Ryan was nothing like my daughter, and different in a way that didn’t feel okay.  Even as a baby Megan smiled at anyone and everyone.
 
< My Thoughts >   “…nothing like my daughter…”
 
In the world of ‘autism denial’, parents often only reach ‘reality’ when there is a sibling or another child to compare the autistic child to.
 
5%    I wasted valuable time not getting him the help he needed.  If you think there is something wrong, there probably is.  Don’t do what I did and waste time pretending your child is normal.  Everything you read and hear about autism is not necessarily true.
 
There isn’t a one-stop center that provides what every child needs for recovery. You must develop your own programs melding medical, behavioral, and educational interventions.   The important thing is to stay on the road no matter how long it takes or how tired you get.  These are our children, so we must never give up.
 
Parents often ask me when I knew Ryan would be okay.  Although his autism was much improved by the 5th grade, I didn’t know he would lead a typical life until much later.  I didn’t dare to believe he was
 
6%    Today, more than ever, we need a new way to help these children.  Their behaviors are not simply autistic, but symptoms of illness. Children who get effective medical treatment can get better.  When effective behavioral and educational interventions are used in conjunction with medical treatment, problem behaviors diminish.
 
This is why Ryan’s story matters.  Ryan’s journey shows us a new road to travel – the road to recovery.
 
10%  Ryan had conversations with objects.  But it was his repetitive behavior that showed the depth of Ryan’s autism most clearly – had we been looking.
 
I will never know if Ryan was born with autism or if autism was something that the world did to my son.  I don’t know if vaccines and the chronic use of antibiotics for Ryan’s never-ending ear infections (from birth and never completely cleared up) caused Ryan’s strange behavior, but they did impact his immune system, and not in a good way.
 
We did not connect the developmental dots.  We didn’t want to.
 
2%     Ryan’s occupational therapy sessions showed us that sustained coordinated intentional physical movement made Ryan’s autism decrease in frequency and intensity.  At the same time, his more normal looking behaviors increased.  Exercise and movement became important to making him more like other kids.  This was the closest thing we had to the miracle cure I kept praying for.
 
Note: For further information on Needing Exercise, go to MENU for – Know Autism, Know Your Child with < My Thoughts > by Sara Luker. Find on MENU, under –  UNIT 7 – 0  Who May Help? Section 7: CAMs Complementary & Alternative Medicine, PART 4 – c. music, d. dance, theatre, e. adventure therapy.
  
32%  Doctor Goldberg told us on that first visit what I already knew to be true.  Ryan didn’t really have autism, even though it sure looked like it.  I didn’t really understand what Neuro-Immune Dysfunction Syndrome (NIDS) meant back then.  I didn’t care.  I had HOPE!  My kid is sick and there is hope that he can get better.  Finally, I found someone who not only wanted to help Ryan, but also had a way to do it.  And he didn’t think I was crazy – at least not yet.

​Goldberg, M. (2024) explains that The Goldberg Approach ™ is based on treating the real disease process that is behind “autism” today. That the neuro-immune system and its interaction with the endocrine system and other body systems are incredibly complex. 
 
33%  It was the NIDS approach combined with intensive rehabilitation that helped my son recover from autism.  Recovery began by rebuilding his immune system.  But just doing the NIDS protocol without any intensive rehabilitation wouldn’t have been enough.  Years of behavioral and educational interventions were necessary to correct Ryan’s deficits in speech and social skills.
 
36%  Dr. Goldberg had strong views on diet then, and his diet restrictions have become even stronger over the years.  He was adamant that extreme diets don’t cure autism and is equally adamant that his dietary requirements are not extreme.      
 
Note: For further information on Communication, go to MENU for – Know Autism, Know Your Child with < My Thoughts > by Sara Luker. Find on MENU, under –  UNIT 7 – 0  Who May Help? 7 – 3  OTHER THERAPIES; Section 3: Introduction, Medication & Dietary Approaches.

39%  When my NIDS-treated kid started to wake up and develop again, ABA compliance training and consistent parental guidance were needed to teach consequences for inappropriate behavior.  Discipline for Ryan at age five was similar to discipline for a typical two-year old.  You have to meet your child at the age they are developmentally.
 
Note: For further information on Applied Behavior Analysis (ABA) therapy, go to MENU for – Know Autism, Know Your Child with < My Thoughts > by Sara Luker. Find on MENU, under –  UNIT 7 Who May Help? 7 – 1  OTHER THERAPIES, Section 1: ABA, CBT, DIR, OT, PECS.
 
His strange autistic behaviors were ingrained.  He had done them all day long for years.  I was told these behaviors helped him cope with our unpredictable and confusing world.  Still, the way he acted didn’t make sense to us or anyone else.
 
46%  Sometimes, I feel guilty because Ryan is okay and having a wonderful life.  This should be the outcome for all children who are ill with autism.  I often question why some of our kids who have amazing parents and do all the right things, don’t fully recover.
 
Could it be that their children’s immune systems are just too compromised?  Or was the doctor working on their child’s immune issues not addressing the real problem?  I pray that one day we will know.
 
< My Thoughts >  “…not addressing the real problem?”
 
Parents who do all the ‘right’ things, but may not be getting the help, and support needed from the professional community.
 
Thayer, N., Marsack, C., et al. (2024) examined a study about parenting autistic children from birth through adulthood. Some of these parents in the study felt that the ‘professionals’ they encountered were not very accommodating to their child’s autistic differences and not tolerant of their autistic traits. Parents felt they were facing prejudice and barriers in the social community, and unprofessional attitudes towards their autistic child in the ‘professional’ community.

Many parents related that the ‘professional’ community did not always agree. They did not treat their child as having a brain variation present at birth, which was causing developmental differences in communication, behavior, and learning. Instead of feeling empowered, some parents were made to feel marginalized and more isolated by the ‘professionals they encountered. Parents were not made to feel capable, nor were they encouraged to set hopeful priorities and goals for their child’s future.

68%  The good news was that NIDS plus school and home therapies were helping him with the real world.  The bad news was that now he was recovered enough to realize he wasn’t included, and he didn’t really fit in this new world.  The worst news was that he wasn’t yet able to learn the complex social skills that were required to connect with other kids.  (He) was never invited over or didn’t have anyone who wanted to sit with him at lunch.
 
74%  Being rejected and bullied caused Ryan to channel his energy away from social interaction into academic achievement.  If bullies were going to call him a nerd, he may as well be the best nerd ever.
 
92%  My latest leap (of faith) has been into the world of genes and autism.
Researchers have identified specific genes whose cellular pathways and function may directly contribute to the behaviors we now label as autism in some children.
 
Children who have one or two gene mutations may progress with targeted medical intervention.
 
Autism is complex.  We all want that magic bullet.  We must continue to search until we find the answer for all children.  That is the way to win our war against autism.
 
​Reference:

Golberg, M. (2024). Documenting Hope. Retrieved online from –https://documentinghope.com/practitioners/practitioner/michael-goldberg-md/

Thayer, N., Marsack, C., et al. (2024). Parental Perceptions of Community & Professional Attitudes Toward Autism. Retrieved online from – Journal of Autism & Developmental Disorders: https://link.springer.com/article/10.1007 /s10803-024-06554-5.

End of excerpts from Marcia Hinds' book.

Thank you for reading and sharing my BLOGs. Comments are welcomed, to be viewed and answered privately. My goal is to assist families, clinicians, educators, and all people ‘autism’, to continue their journey on the Autism Highway. At the end of each website Extended Book Review, please find a source to have the whole book to read.

Regards,
Sara Luker


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Sara Luker