Middle-of-the-Road Autism

You are standing in the middle-of-the-road in autism land and wondering how you got here. You look to the left and there seems to be a ocean of milds who are surging ahead. You look to the right and you see a smaller pool of more severes (deemed severe by your own definition, since no one can agree what severe really means, and looks are often very deceiving). And here you are, stuck in the middle of the road, with that damn Pretenders song playing on repeat in your head (and despite having a mega hit song Middle of the Road, I can’t find a good image with Chrissie standing in the middle of a road, only a grainy image of her in that sequin hat from the video):

Chrissie Hynde

Actually, us middle-of-the-roaders feel more like the guy in this album cover (a long stretch of road ahead of us, trying to figure out how to get where we need to be when we don’t even know where the hell that is):

middle of the road

It is a tough road, so I wrote this post to let you know you are not alone.

You have probably heard some of these phrases at some point, starting from when your child was young and newly diagnosed to the point you find yourself now:

“Are you sure he/she has autism?”

“He/she is still young”

“He/she has some language, and that is a good sign”

“He/she is so smart”

“There is so much promise”

“He/she can do so many great things”

“We had such a great early intervention team. Are you sure they did things right?” (this one is usually followed by a barrage of questions, trying to figure out what your team didn’t do that their team did)

“Try this therapy, it worked miracles for us” (this is a popular one with the biomedical solutions crowd)

“My kid just surged ahead one day, it could happen for you”

You may be mad. Mad that the therapies didn’t work like you expected, mad that other people who clearly had children with a different genetic profile from your child don’t seem to understand your situation, and mad because you have some unresolved and chronic grief. It is okay to get mad. That is completely normal.

You may also be sad, or even depressed. That too is completely normal. I was depressed for an entire year during early intervention when things were not going as I hoped. I dip into sadness frequently and I have learned to dip in and then get the hell out as quickly as possible. Some of my fellow middle-of-the-roaders talked to their doctors and got help for their depression in the form of talk therapy or a pill. Please do that if you need it. All of these sad feelings, all of these approaches to dealing with the sad feelings, are normal and acceptable. Do what you have to do.

But you can’t stay mad and sad forever. So what next? Acceptance of course. But how? Everyone has to find their own road to acceptance, but this has helped me:

  • I have accepted there is no magic bullet. This is a slow slog, where my child is developing according to her own unique developmental path.
  • I found Facebook page owners who focus on practical problem-solving and acceptance of children with autism. Joining autism advocacy, presume competence, or neurodiversity pages will help you get into the “acceptance” frame of mind. You don’t have to agree with every post the page-owners make. Examples of my favorites are Mama Be Good (https://www.facebook.com/mamabegood), Emma’s Hope Book (https://www.facebook.com/EmmasHopeBook), and Judy Endow (https://www.facebook.com/JudyEndow).  There are MANY pages out there, so spend time joining and unjoining to find a core set of pages that help you with acceptance.
  • I found a local group of people who are also slow-slogging it. Finding them took awhile. I went to special needs gatherings, formed my own special needs groups, ran my own events, and joined as many special needs groups that I could find in my area (to start, check meetup.com, google search for closed facebook groups, search yahoo groups).
  • I have decided that my relationship with my child is more important than pushing her ahead before she is ready. I suggest looking into relationship-based “therapies” (Floortime, RDI [Relationship Development Intervention], or Son-Rise). Do the methods suggested by the therapies not because you are searching for that magic bullet, but because the therapies will give you tools to interact and understand your child better.
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8 thoughts on “Middle-of-the-Road Autism

  1. judy says:

    I guess I fall into the mom of milds catagory, and I know that you have struggles and pains that I have not. But I’m sure you also have some amazing celebrations that we may miss. You are a very loving, strong, an instinctive mother and you are giving your daughter some amazing gifts with your love and flexibility and persistence.

    I appreciate your writings and blog. It has really helped me with my youngest especially. I may never have noticed how she mirrors my hand movements instead of copying them in the correct direction if you hadn’t written about it. You are honest and direct, which is sometimes the greatest assistance a mother can receive, when it comes from love and acceptance, rather than fear and judgement.

    Your road may seem long, and the journey pitted, but with passion and practice, you shall one day, arrive.

    🙂

    • grahamta says:

      Thank you so much for your kind words and support! It is just so strange to be in the middle when we started out where most people would call mild. With time the path has become more uncertain in some ways, and I think it is the uncertainty which gets to us, especially when you in the middle and the progress is so very, very slow. We rarely do anything where I can say…yep, that really made a difference! So I think a lot of people get in the middle get down. And I also see jealousy from the middles for the others who are surging ahead. And I guess my message was just yeah, you are going to feel that, own it and then move on.

    • grahamta says:

      You had the hand reversal thing? You are the first person to ever tell me that…awesome that it helped 1 person. It was worth writing about!

      • judy says:

        Yes, we are working with her on it now. And thus far it hasn’t been as severe as your little girl’s. But what is interesting is that for mine, it’s a relatively new development. She didn’t used to do it, and now there are quite a few times when she is really confussed or struggling, mostly when I am teaching her a new sign, but even sometimes ones that she is very familiar with. Odd huh? I’ve noticed a slide back in several other skill areas as well, like walking down stairs. Has your daughter always struggled with it or did it develop later? I really don’t know how long it would have taken me to notice if I hadn’t read your post.

        She just started using words with her signs and I am afraid of a slide backward again. It happened once, it could happen again.

  2. grahamta says:

    I would say it can go up and down for sure, then eventually, after months or years, it is not a problem anymore. Overall we have experienced a very slow and delayed development path. I am not sure about always reversing things…I feel like when she got the point of focusing on my hands and trying to imitate, then she tried to imitate exact position and that is when it really kicked in. It is pretty common to have occasional regression in certain areas. It may be she is working on something else or focused more on a certain sensory input. I would try your very best not to worry, and if you see a huge slide backwards in many areas, talk to you doc. It is so hard not to worry, but that is what happens when these kids have such unique developmental paths.

  3. judy says:

    I just recently found myautismteam.com
    my username is tutyfrutyjudy, if you wanted to connect on there, or you might already know about it,

    Parents with kids all over the spectrum are on there and it is such a positive, and encouraging place to just talk and have others just get what you mean. I love it there.

    Hope you are having a great weekend!

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