Susan's Blog

Wednesday, March 29, 2006

Letting Go — Or Giving Up?

Joy of Autism has posted a particularly beautiful passage, about her understanding of autism as another way of being, rather than something to be cured.

When Adam was first diagnosed, I was confronted by one type of “scientifically proven therapy.” I joined an organization that funded research in support of a cure because I believed, at first, that autism was an illness that masked my son’s true potential. At least that was how autism was presented to Henry and I. Once we enter the “stream of autism,” as parents, there is little choice to believe these messages as sole choices in a culture that does not accept acceptance for people who are different.

I hired therapists who viewed Adam as a pathology and that didn’t feel right. After two months of being in “the autism stream,” I decided that something was horribly wrong with this view. It took a while to trust myself…

This resonated with me and made me remember how I felt when I read Sean and Judy Barron’s There’s A Boy in Here. I am not referring to the alleged “recovery” of Sean Barron. Be that as it may, what moved me is the part where Judy, a mother in the ’60’s with a young autistic child, rejects the current thinking of her day, that said that the mother caused the autism, this was a magical moment for me. Such liberation, such bravery! To be able to say to an entire establishment, “You are all wrong.” It is a lonely, but completely empowering, path to take.

And it is a scary path to take. To go against the system in one way or another is very frightening.

Last night I attended a meeting of a group of young parents whose children are very young and have ASD. These parents are now trying to organize and get our town to provide better supports to include their children in typical classrooms, much as I tried to do with the parents of Nat’s peers eight years ago, which led to my running for School Committee.

All of these parents were very knowledgeable about autism approaches, about the various components of education that their children require to learn best. They all had the common trait of being certain that, given this powerful combination of services, their children would continue to thrive in public school settings. I still believe that. Our town has never put together the right combination for Nat to thrive here, so he has always been in private, mostly autistic-oriented placements. I am a believer in public school, so I have had mixed feelings about this. On one hand, Nat has had a lot of the attention he requires to learn. On the other hand, he is lost to our community.

Nat did not have effective intervention until he was five. And then, after years of an inconsistent, spotty record of school placements (we were continually dissatisfied with his education), he wound up where he is now, a private, prevocational school for autistic people. I will always wonder if he would be higher functioning if I had followed my instincts and gotten him evaluated and helped much earlier, like so many of these new parents I know. If the schools had done right by him, if I had found his medication earlier, if I had kept up the pressure and made sure he had adequate speech/language therapy all the way through, if, if, if…

Would he be higher functioning, (I hate that term, but I can’t help but feel that I wish he could talk more, so that he could learn more about the world, and we could learn more about him, and he could be independent) if I had known what to push for sooner? Even though I have the courage to think differently, I don’t always hold onto it. Even though Judy Barron’s attitude empowered me so many years ago, I did not understand fully what Nat needed until years later. I did not even really understand how to connect with him until later. How do all these younger parents know so much, earlier? Why couldn’t I have had as much clarity sooner? Would it have made the difference in Nat’s life?

I was both moved and lonely at last night’s meeting. I was cheering them on, helping in any way I could, but on the other hand, the following question kept swimming around in my head:

By no longer being this angry, have I given up on Nat?

Is there more I should be doing? Is my “peace” with autism just another form of healthy letting go and coming to terms, or is it giving up?


There are times during the past 9 years that I have felt this way – am I giving up on my daughter? In the back of my mind, I feel, should I be engaging her EVERY WAKING MOMENT??!! I have had bouts where I have done this – it is unbelievably exhausting – and we are both pretty unhappy. Plus, my other two children suffer from no attention at all. Sometimes I am accepting of autism and sometimes I lock the bathroom door and cry. I don’t know the answer…or what to do for that matter.

— added by Susan on Wednesday, March 29, 2006 at 6:42 am

This is a question that seems to be levelled almost continuously at those of us who have come to value our kids for who they are.

For me, having ‘walked both paths’ of an overbearing desire to ‘cure’ and my subsequent ‘awakening’ (to use Estee’s fine word) the difference in my daughter is is plain. Since we accepted she is happier, more confident, more curious and quicker to learn – we’re sure that its down to feeling valued rather than feeling unvalued.

I’d be willing to bet Nat feels exactly the same :o)

— added by Kev on Wednesday, March 29, 2006 at 8:40 am

Yes, this is one of the big conflicts I face every day. Accept Sam for who he is or fight to find the Sam that we imagine is somewhere deep inside. It really comes down to finding a balance that you can be at peace with. I think so much depends on the type of person you are. I’ve met some parents who are so bitter towards the medical community b/c they are convinced immunizations caused their child’s autism. But while they spend all their time going to meetings, writing to their legislators, etc., they are missing out on what is perhaps the bigger picture, which is how to help their child, whatever the cause of their autism, to be happy and to do their best in this non-autistic world. For me, I try to do a bit every day to help Sam in his academics, for example, but I have somewhat “given up” or “accepted” (call it what you will) on recovery. As the years pass, and he will be 7 next week, I have come to peace that this is Sam, and it is no more imaginable that I can stop him from being autistic as it would be for me to stop myself from being a worrier!! I don’t think you ever gave up on Nat, Susan. You do what all of us moms have to do; balance all the needs of your family, love them all, and go to sleep each night not necessarily feeling like you’ve done all you can do, but at least that you did your best for that day!

— added by Sam's mom on Wednesday, March 29, 2006 at 8:52 am

I have to agree with Kev- this has been my experience with A, too.

— added by bethduckie on Wednesday, March 29, 2006 at 2:30 pm

For us and our 15 year-old son with autism, we have done a good deal of both…letting go and giving up. Letting go of our hopes and dreams for him and giving up on trying to make him into what he cannot be.

When Alex was 4, I sued the pants off of anyone standing in my way of my son’s recovery. I had read “Let Me Hear Your Voice” and I was determined that no one would stop us from succeeding in recovery for my son. After months of fighting, we achieved our goal of an intensive ABA program, complete with occupational training and speech therapy, which at that time was unheard of in our area. Alex made tremendous progress at first. He was falling into the statistic of being highly curable, since he became echolalic right away. We were flying high! He was responding and would be cured! I functioned in this mode for 3 years, giving every ounce of my being to his recovery.

I don’t want to turn this into a novel, but I will say this. I did everything I could do “cure” my child. Some ABA advocates would say 4 was too old to have started his intervention, but a 4 year-old is still highly moldable. The very same troubles we have with him now at 15 are the same troubles we had with him when he was 4. His brained is just hard-wired incorrectly. I truly believe nothing could have changed his outcome. It certainly isn’t for lack of trying.

I believe many kids with autism have limitations they are completely unable to overcome. And that’s okay. We all have to find that balance of treatment vs. sanity that we can live with. We are all human and NEED to have other things to occupy our time other than autism. It’s the only way to be mentally stable, which ALL of our family needs us to be!

From what I’ve read so far in your book, I think you have found a great balance that works for all of you, including Nat. A healthy, functioning family is the most important thing you can be giving him.

Oops…sorry so long!

— added by Cyndi on Wednesday, March 29, 2006 at 5:46 pm

Susan, I really enjoy your book and your blog because to me, you seem to have struck the perfect balance between doing all you can and accepting your son for who he is. Please try not to beat yourself up so much. By what I can read, it seems your family is faring quite well, thankyouverymuch.

— added by Suzanne on Wednesday, March 29, 2006 at 5:59 pm

Susan I am both amazed and mystified by your challanges. I am passionate about parenting and how it comes in many shapes and sizes. I was so moved by a show on Autism and possible causes (MMR vaccine + Bowel Disease) I watched a while ago. I don’t know the depth of Autism as much as parents experiencing it. But I do think raising awareness amongst the greater community is so important. My heartfelt thoughts 🙂


— added by Rachel Cook on Thursday, March 30, 2006 at 9:13 am