When is a cure for #Autism acceptable?

      6 Comments on When is a cure for #Autism acceptable?

This is sorta out of left field but I wanted to ask this question of my readers because I truly believe that we are mature enough to consider this topic of different perspectives.

The topic of curing #Autism is an emotionally charged one for sure. 

There are so many people out their that would even consider the notion of a cure to be insulting to those with Autism.  I can totally understand where they are coming from and I completely respect their position.

In most cases of Autism, or at least a large number of cases, kids are Autistic from birth and diagnosed a bit later in childhood. 



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However, there is a subset of children that seemingly develop just fine, hitting all milestones and then one day, something happens. I’m of course referring to regression and not talking anything related to vaccines so please leave that out of this for right now. 
We experienced this type of loss with our oldest son, Gavin. 

I’ve shared this story many times but not all of you have heard this. 

Gavin is our now 13 year old son, diagnosed with Aspergers in 2005. He developed as a typical child, hitting his milestones and not showing any signs of Autism. 

As best we can recall,  it was around his 3rd or 4th year of life when everything changed.

I realize how this will sound to many of you but it’s not dramatic or an exaggeration. Please keep in mind that this is the best way I can describe it.

For Lizze and I, it was literally like we put him to bed one night Gavin, and when he woke up he was someone else. It was a dramatic change in personality and it was like we were strangers to him and in truth, he’d become a stranger to us.

It was literally like we lost Gavin.  We grieved as though he had died because in many ways he had.

The best way to relate to this is alzheimers. Though Gavin’s regression or change was very quick by comparison, the end result is somewhat the same.

If I were offered a cure for Gavin, I don’t think I would hesitate to much to accept it.  Understanding that Gavin has other medical and mental health issues that are likely behind this regression or at least related.

In my eyes, I wouldn’t be changing something about Gavin that is just part of who he is. I would be killing off something that stole him away from us and returning him to who he was before this started.

I guess my point is this. If you happen to be in the subset of families that have experienced this type of loss, is the idea of a cure, less controversial?

With my other two on the spectrum, this is who they were from birth.  They are who they are and we love and embrace them for that. 

However, with Gavin, it was like he was stolen from us.
The idea of a cure would possibly bring back the child that was taken.

Is there any circumstances where a cure would be accepted?


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About Rob Gorski

Father to 3 with Autism and husband to my best friend. Oh...and creator fo this blog. :-)

  


  • I too can relate…with classic autism, my daughter (Lonely Girl, Gracious God for full story) would literally “change” like a chameleon overnight. I especially remember wondering if she’d ever grow past what seemed like she was stuck in a little girl world although she was nearing age 16…then one morning, the little girl was gone! In her place was a “teeny bopper” who suddenly wanted make-up and boyfriends! Yeow! I was in shock. It happened many times after that, and though she was born with it, her autism has often changed and this is one of the ‘symptoms’ of classic autism. A common statement I’ve made to many a new parent…”just wait a bit longer…he/she will change” …especially when there were behaviors that were nearly unbearable. We called my child “the Changling” too. But to answer your question…I would love…and I pray daily…for a cure, though there is none. Those who seem to be “cured” simply have a “mild” or different ( like in Asperger’s) level of diagnosis, often misdiagnosed as well. There is no cure as yet. But when you have an adult child, one who still has tantrums though now are so scary you can’t remain in public, or who can beat her caregiver to a pulp if she is afraid, upset, confused, threatened, ?????, you dream and long for a cure….for God to heal her. And yes, I know there are those who say “it’s just a different way of life” or whatever to describe the “wonder” and “lovely” side of autism…do not have the same “autism” you and I are living with. Please see for more on this subject and criteria of autism that is factual. Meanwhile I will add you to my prayers for your family and all the others who walk this rocky road of autism and dream of a day when our child is cured!

  • rmagliozzi says:

    I would take the cure! Hell, yes! My autistic kiddo regresses like this due to having PANDAS and lyme and some other infections. It is horrible to deal with. He is happy one day and wakes up afraid, angry, weak, and forgetful the next. It is like having two children: an almost normal one when he’s at his best, and a sick, non functioning one when those stupid illnesses rear up their ugly little heads, or we run out of his doxycycline for the lyme disease. I believe the closest thing possible to a “cure” is to get to the bottom of all their physical issues: autoimmunity, organ dysfunctions, metabolic issues, illness, genetic mutations or problems and start treating them accordingly. From what I have seen, symptoms cannot be successfully reduced otherwise. For example, when we treat the lyme disease we have increased muscle tone and coordination, better sociability, lack of sleep disturbances, less anxiety, OCD and way less violent behavior. When we treat strep we have less tics and OCD and strange body movements. When we treat viruses he has, the brain just works alot better overall. When we give him natural thyroid supports he has less mood swings and upsets.

  • AMDuser says:

    I am on the spectrum I was born with it but I think in my personal opinion it would be a hard choice for me because there is some of being on the spectrum I like because I can use my sensitive hearing to diagnose stuff with computers like if it is not starting up I know right away because there is sound the hard drives make when they die. I see mine as a double edge sword. That is my personal opinion, but others like that are more severe on the spectrum or parents of a low functioning kids on the spectrum may have a different thought

    • lukesmama says:

      AMDuser  
      I agree with you completely. I think a “cure” would be more acceptable/ desirable to those whose autism limits their ability to live a functional life.

  • CarlBainbridge says:

    Straight answer. 
    I would take it for my son in a heartbeat. 
    That said no two people with autism are the same, Our son is likely to spend the rest of his life living with us (at least based on present development) simply because he does not have the life skills to do otherwise, he has little, to no speech depending on his mood and while he can communicate the basics, he shows absolutely no interest in the world in general even though his school work shows all the signs of him being highly intelligent. 
    So in my case I would take it, in the cases of others who lead lives that are fullfilling to them and their families I understand the fact that there is no interest in this cure for them and that is a choice that they have every right to make for themselves.

  • Julie Sparks says:

    Ours was nothing that dramatic, but our younger son did definitely regress.  He is the one for which I hope and pray daily for a cure.  Our older son showed signs from birth and I would still take a cure if it was available because I don’t think that would change his “essence” to remove some of the difficulties from his life.  That said I don’t think anyone should have a cure forced on them or their children and if my 18 yo were to tell me that he wanted to keep his autistic self, I would certainly honor it.  I think he would take a cure though.  This is not however something we’ve been able to discuss because he is too literal.