Perspectives

Ephesians 4:1-3

As a prisoner for the Lord, then, I urge you to live a life worthy of the calling you have received. 2 Be completely humble and gentle; be patient, bearing with one another in love.3 Make every effort to keep the unity of the Spirit through the bond of peace.

Lately there has been a lot of information in the news regarding the acetaminophen/Tylenol information, and leucovorin as a possible autism treatment. I just wanted to share some thoughts from my perspective. My family and I have lived over 12 years day in and day out with an autistic child with severe symptoms. Most families probably don’t have that experience. I’ve heard and read a lot from a variety of families- those who have a child/children with autism and those that don’t. I honestly can understand responses coming from both sides. As a mom with an autistic child (severe) my initial thoughts (which I never spoke aloud at first) were:

1. Thankfulness that we have leadership that actually sees us (autistic families) and wants to try to help…has prioritized trying to help. We have literally had doctors tell us they couldn’t see Landon anymore, they weren’t comfortable dealing with his issues, and refer us to someone else. By the grace of God, we found a nurse practitioner who tries her very best with Landon and never gives up. So to actually be seen and not ignored or brushed aside as insignificant is huge to me! Is our leadership perfect? Of course not, but just knowing that efforts are being made and will continue to be made counts for a great deal in my book! 
2. Frustration ( and then understanding) at the jokes and negative comments that have been made about Tylenol. I initially was frustrated by those who have high functioning kids on the spectrum and/or those who have “normal” neurotypical kids laughing and making fun of it all, but then I realized, they can’t understand the impact of severe autism because they don’t have to live it. Ignorance is bliss. I remember how life was before we had Landon. I’d see kids with a disability and their parents and think “wow, they are wonderful people, but I’m glad I don’t have to deal with all that.” I was completely unaware. I couldn’t empathize because I hadn’t experienced it. So I decided to let the frustration go, because I remember being a “normal” family before Landon. It was such a sweet and simple time. Life was so easy.  But I have friends now who do have kids with autism. I’ve seen their hurt and pain and frustration. I hurt for them as they are being hurt right now. I’m sorry you are hurt. Please know you are seen and not forgotten.
3. Is preventing autism as simple as not taking Tylenol? Of course not…but after reading some studies, I realized it could play a small part in worsening autistic symptoms. We found out in February that Landon actually has a rare genetic syndrome. It’s called 7q11.23 duplication syndrome. Landon’s geneticist believes that his syndrome accounts for the severity of his autistic symptoms. I rarely took any medication with any of my pregnancies, but I did give my kids, including Landon, Tylenol when he was sick or had shots. (My kids were vaccinated, however I used an alternate shot schedule so they would get no more than 2 shots per visit.) But with Landon’s genetic profile…the chance that Tylenol could have affected him more than a neurotypical kid is a definite possibility. I recently read that Tylenol depletes glutathione in the brain which is a necessary antioxidant to clear or clean out toxins in the brain. When a foreign substance (such as a vaccine or other material) is introduced into the body, glutathione does its job and cleans out the toxins. Tylenol reduces glutathione in the brain . Tylenol has been the medication of choice to reduce fever/pain in infants. Would taking Tylenol be a problem for most typical kids? Probably not. Could a genetically predisposed (susceptible child) like Landon taking Tylenol as an infant be a problem? Yep, especially if it caused a prolonged increase in toxins in the brain during critical developmental stages.
4. Autism is extremely complex and multifaceted. It will probably take a long time to dig through all the complexities, causes, and how those factors work together to make autism what it is. But I’m thankful the digging has begun. I pray for answers and treatment and hope for my family and all families affected by autism. I will continue to listen to and empathize with both those whose families are affected by autism and those whose aren’t, as well as those who have high functioning autistic kids. I pray God helps me to always respond to others with understanding and kindness no matter the circumstance and my own perspectives. Blessings.
   
   Your friend,
   Tiffany