The Research Findings.

“Synapses are fundamental units of neuronal connectivity in the brain. It is at these specialized cell junctions that neurons communicate with one another. Many neuroscientists now look to the synapse for principles of learning and memory, for processes underlying behavior, and for pathogenic mechanisms of many neurological diseases.”  Guoping Feng, Duke University Lead Researcher.

Neurons & Synapses

This is a quote from one of the guys who published research that could rock our future worlds.  That hope is in findings which were published on Sunday in the journal, Nature.   The research was picked up on Monday by major media outlets, including BBC News (here) and ABC News (here).

One of my Twitter friends, @julesbirdie brought the article to my attention on Monday morning after I published yesterday’s post.  @Julesbirdie was full of hope having read this article.  She passed it on to me.

On the other hand, another Twitter friend, Tam, @TMBMT, was upset by the research because she felt that the claims did not match the facts.  Tam started to express her opinion.  Julie expressed hers.   The two opinions were divergent.  And unfortunately resulted in a falling out between two people who were actually strangers.

Julie was annoyed by Tam’s claims of “false hope.” Julie felt that Tam was pessimistic and research is necessary to cure any malady.  Tam was annoyed because she felt the study implied that “all we need to do is fix a specific problem they created in a mouse, to have a solution for autism.”  She did not want others to be hurt or disappointed by a study that does not solve autism.  And so the disagreement resulted.  Perhaps, the two will someday understand each other.  I know each has reasons for her opinion and I respect both. (I heard some name-calling was done.  I did not see that and express no opinion on it because I did not see it).

The research at issue showed that a certain gene that controls production of a protein called Shank3 in the synapses (the areas between neurons- i.e., brain cells) when mutated causes social problems for mice.  The mice brains were found to have defects in the connection between the cortex and striatum of the brain.  Healthy connections between these areas are important to regulate social behavior and interaction.

Even though only a minority of people with autism may have this mutated gene, it brings to the forefront with the researchers, the idea that other proteins that control synaptic function may be disrupted in others with autism.  If that is true, so they say, then it should be possible to develop treatments that restore synaptic function regardless of the protein showing the deficit.  Thus, hope is born.

How fast will all this theory become reality?  I have no idea.  But each tiny step leads to another which may signal a viable, scientifically based treatment for autism.  Will it be a permanent change?  Will it be one that requires medication for the rest of one’s life to maintain?  I don’t know the answers.

To me, the research is exciting and yet, I know there will be no cure tomorrow, or the next day.  I do know that I am still full of hope and possibility for a real working solution to the daily manifestations of differences that subject our children to so many challenges and cruel vitriol within the school day.  If there was a drug and someone was handing it to me to use – would I?

The news of this study made me rethink what I wrote about acceptance of my son as he is.  Clearly, I love him very much, just as each of us loves our own child.  But, this study made me feel hope for him.  I was left questioning myself as a potential hypocrite.  Had I just written that I love and accept my son as he is, on the one hand, and then profess excitement that a possible treatment may be available someday that would change him?

While others wondered whether they should put much stock in a scientific study that takes a baby step forward toward treating autism, I wondered whether I would actually give such a treatment to my own child.  I want to shout out, “Hell, yes!”  but does that denigrate who he is now?  Does it make me a bad mom?

It makes me, a mom, who despite her talk of treating my son’s disability with respect and equality, will sacrifice all that to make him “normal.”  To make it so all he would have to face, is what ever other child faces in the daily drama known as “growing up”.  Doing that growing up, on an even playing field without the added stress of a disability that makes you work 20 times as hard to break even with the other kids in your class.

Late yesterday afternoon, I attended my son’s gym class again.  The parents were invited to sit inside and watch the children.  While all the other kids answered the teacher’s questions: “Where do we go?”  “Yes!  Station 2”  “Very good, Holly!”  or whatever the child’s name was.  My kid?  Sitting in a corner, looking up at an angle, talking to himself or not answering at all, looking down or running to a door with a push handle bar and repeatedly pushing it open.

Running around the gym, the other children were more limber, more in control of the direction of their bodies.  Doing somersaults and walking up the wall with their feet.  My son?  Flopped down on his back on a mat, clueless about how to perform the most basic forward somersault.

Help at Gym Class

Would I give that up if someone handed me a pill that would reconnect these synapses so that his brain could receive messages like the rest of us?

So he could do a somersault, pay attention, answer with the class, and know where his body was in space?  Hell, yes.  Would it change him?  It would make him more confident, more in tune with his surroundings.  It would help him use language to respond promptly like his peers.  It would remove that invisible cloak of disability.  I’d be lying to say I wouldn’t take that pill.  I’d take it and then some.

So, I went back and read what I wrote before.  I said that I don’t need him to be normal and that I love how he interacts with me at home and how we love each other.  I did not say I wouldn’t jump to give him a “cure” if there was one.

In the end what’s true is every parent wants to make life as smooth as possible for their children.  If there was a cure for a paraplegic or someone who was hearing impaired, would we take it?  Yes, most likely, assuming it was safe enough that the benefits outweighed the risks.  So, if there is a “cure” for autism, why would that be any different?  It is a neurologically based disability.  To remove it, ultimately would take away more obstacles that it would create.

Like everyone else, I am skeptical that this day will come soon.  But a story like this does feed my need to hear some positive stuff in life.  After the past few weeks that I’ve had, a story like this fed me emotionally.  Someone might later take the plate away, but I’m already feeling full of hope for the future.  And when you’re hungry, hope can be a very good thing.


About solodialogue

I'm a lawyer and the mom of a 6 year old boy with autism. I work part time and spend the rest driving here and there and everywhere for my son's various therapies. Instead of trying cases, I now play Pac-man and watch SpongeBob. I wear old sweaters and jeans and always, always flat shoes to run after my son. Yeah, it's different but I wouldn't change it for anything. The love of my child is the most powerful, beautiful and rewarding aspect of my life.
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11 Responses to The Research Findings.

  1. I do no think there is anything hypocritical about your two posts. We love our children for who they are today, but we also love them for who they will become tomorrow. If there is a way we can help them on the path to who they will become — any good parent would take it.

    I love Kaia for who she is today. I love her energy and her sweetness. These are basic parts of Kaia’s personality that I will nurture and encourage. Hopefully, she will overcome the challenges in her life (or a magic pill will cure her SPD and MERLD 🙂 ) and these core parts of her being will shine through even more.

    But even if these things I love so much about her fade, I have faith that they will be replaced by something even more beautiful – a confident, successful young woman who knows she can do anything.

  2. Jen says:

    I think any step forward, no matter how small, is a good thing. I would give Katie a pill right now if I could. I know I said it yesterday and I will say it again…I don’t think any of the good would be taken away…just the autism. Autism in our life brings nothing positive to the picture. I do not look at it and find beauty or wonder or any of that. It’s just the way it affects my child. I can live without the aggression and screaming and hatred of herself. Do I have hope they will find a cure…not really. But I am glad they are researching and I don’t care how small the find…it’s a step further than we were yesterday.

    • solodialogue says:

      I guess inside we all have our doubts about a cure. Sometimes, we have to express the skepticism in order to ground ourselves and keep from becoming disappointed or further disillusioned so we do not become depressed. On the other hand, this research has discovered something so interesting, it must have serious implications for a new direction of travel in the scientific community. And I think we feel that baby step forward with a lot of cheering and hope.

  3. Kelly says:

    I really do not have anything different to say, or anything that would add to this conversation, because you, Karen, Karla and Jen have said everything I would say. I just want to say, though, that I think these conversations are great. And that we, as parents and family members who have loved ones with ASD should be having these conversations.

    My personal opinion is that the more information that is available, the more conversations we have, the more we talk about what helps our kids, etc….the better! What works for some will not or does not work for all, but knowledge is power.

    Thanks for posting this and getting a great, albeit fiesty, conversation started.

    • solodialogue says:

      I agree that conversations, no matter how emotionally charged they become are good. Because they make us think and give us perspective. And who doesn’t need some of that? Good point, Kelly! Knowledge is power. 🙂

  4. Flannery says:

    I concur!! I love my son enough to accept him and also to help him reach his full potential. And we all need that hope. Desperately. I can’t always sit and wonder how millions and millions can be spent on research, with no results that bring us any answers. At least this gives us something to hold onto for a while.

    • solodialogue says:

      Yes, I wonder how much of that money is wasted. I’ve seen some pretty weird research which has no causal connection to its conclusion. This one is different, I think. And I think that in a good way – even if it does not lead us where we want to go – at least it is leading us somewhere…

  5. bbsmum says:

    The point those Twitter commenters should remember is that those who follow research in the hope of a cure do so *because they love their children*. Those who reject talk of a cure do so *because they love their children*. This huge thing that unites us seems to be the first thing that gets forgotten when people become angry with each other 😦

  6. eof737 says:

    “but I’m already feeling full of hope for the future. And when you’re hungry, hope can be a very good thing…” I join you on that note as it is part of what keeps you/all of us going forward every day. I do hope they find a key to the door in our lifetime and it is not entirely improbable.

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