Mother Talkers

Autism Awareness

by Sue in Queens

Tue Apr 10, 2007 at 04:57:46 PM PDT

April is Autism Awareness month, so I thought I'd take a few minutes to share some information and experience.  I apologize ahead of time if you feel like you've been deluged with autism information in the last week - awareness activities are everywhere!  

But here are a few things that you might like to know.

A recent study looked at one symptom - turning to an adult who calls your name.  They found that at 12 months, most of the babies who did not turn when their name was called eventually got diagnosed with a developmental delay, and a significant number had autism or a related disorder.  This is huge, because if parents and pediatricians have a simple screening tool, we may identify children earlier.

Other early signs include lack of babbling and back-and-forth joy at an early age.  This tool is one we use to help decide if we want to do more testing.

Here's some information from the CDC who estimates that 1 in 150 children is affected by autism or a related disorder.

The brighter side is we are learning more and more about how to help these children do well.  And some children who get a diagnosis of autism or autism spectrum (milder version), later do well - entering regular classrooms with some help, have friends, continue to progress.  Other kids, more severely affected by autism, will need lifelong support.

What do we know about treatment?  Early, intensive, systematic teaching by a qualified team, parent training and support, and an emphasis on the development of functional speech and social skills seem to be essential elements.  Several states, including CT and NY, have developed guidelines for identifying and serving children with autism.  This means that parents have a somewhat easier time getting the services they need (it's not perfect by any stretch, but it's getting clearer).

Finally, there are some amazing organizations, including Autism Speaks and the Autism Society of America which help distribute information, support, and services for families who have a child on the autism spectrum.

Thanks, if you've gotten this far, for "listening".  This is both  my job and my life passion.  I love these kids, and my heart sinks for their families.  I often say that I would love for there to be a cure - the best thing that could happen would be for me to be unemployed - but in the meantime we all work together as best we can!

Tags: autism (all tags)

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  • Yay Rah! (0 / 0)

    My oldest, now eight, has asperger autism. So does his father.  When he was three I was told he may never go to a normal school and have friends etc.
    It's been a very rocky road, and will probably continue to be (being married to an aspi isn't easy, either!!!), but Tommy is in the second grade, with a special ed teacher in class five hrs. a week, he has friends, learns more and more to compensate and cope, and is doing better than I dared to hope.  Everyone, myself included, is amazed at his progress.
    I can't stress the importance of early intervention enough.  Not only for the children, but for the whole family.  Knowing what we're dealing with has made my life a lot easier.  And it's made it easier for me, despite the frustration, to love him just the way he is.
    Sue in Queens, I'm going to drink a cup of coffee in your honor now. People like you make such a huge difference, keep it up!!  
     

    by bluesheep on Wed Apr 11, 2007 at 03:22:51 AM PDT

    • Thank you (0 / 0)

      for sharing your story!

      It sounds like your son is a great kid who has made great progress!

      I agree with you on the importance of EI - getting intervention for the child and support for the family is so important.

      by Sue in Queens on Wed Apr 11, 2007 at 03:28:40 AM PDT

      [ Parent ]

    • Hi bluesheep (0 / 0)

      If it's not too personal, I wonder which services were / are most valuable to you as a parent?  I work in special ed with preschoolers and am always eager to hear from parents who have gone through various agencies and institutions about what worked for them and what didn't, and what they wish would have happened.  Did you search around on your own for info about what the expect, was there a support group, etc.?

      Who told you your son would never go to "normal" school or have friends???  I've never said that to a parent, nor would I.  There's no way any of us can tell what a child's future will be but there is always the possibility of learning and connection with others.  I am continually amazed by how kids and families adjust and cope with all kinds of things in this life, and I firmly believe if someone isn't progressing, it's because we haven't found the right thing to try yet.

      I'm glad to hear your son is doing so well.  Congratulations to you and your whole family.

      by mamacita on Wed Apr 11, 2007 at 10:34:26 AM PDT

      [ Parent ]

      • Hi mamacita, been off in mommy reality... (0 / 0)

        so I didn't get a chance to respond until now.
        Where to start????
        We live in Germany. My husband is german. I don't know how helpful this will be, because it's a completely different system. But it never hurts to let off steam, and the emotional aspects are universal.
        My son started at a public preschool when he turned 3, and after 6 months had not spoken a word or made eye contact at preschool. He was relatively delayed in speech development, but my pediatrician considered it normal given his bilingual family setting. At home he was communicative, if not very.
        Someone from an early intervention center came to have a look at him in preschool, after the teachers expressed their concern to me about his lack of interaction. It was she who later told me he'd never visit a normal school. Luckily for me, my pediatrician told me to trust my gut and referred me to a center in Frankfurt for kids with developmental issues. The doctor there was more cautious in her assessment, but also wanted to prepare us for the worst.
        That pissed me off, and I have to say it was horrible hearing time and again only what was "wrong" with him. There was never anything positive, for example nobody ever told me about the enthusiasm and expertise aspies can develop for their areas of interest. It is so great when Tommy gets on a roll when he's telling me about space travel, or how much he loves the number 8. His eyes light up. He also has a fantastic memory.
        I remembered being surprised at how long he liked to stare at a fence rail quilt on the wall as an infant, and later on he could spend hours spinning wheels. I guess I wasn't really surprised that he was different from other kids. But it was still tough to deal with.
        We had the bad luck of his congenital heart defect which was diagnosed at roughly the same time, so I spent a lot of time driving around from therapist, to the doctor and back again. He was 4 at the time and I had a 2yo and an infant as well. That was incredibly tough on me physically and emotionally, and I felt overwhelmed.
        I think the attention and support that Tommy has gotten through the years is okay, but there should have been someone there for the rest of us as well. It's not just more stressful with all the runaround, it's also something you really have to deal with emotianally when you have a child with special needs. Tom was so much the center of attention, that I neglected myself and my needs, as did my husband.  I was really exhausted and depressed for a long time. The dynamic of my kids, the middle one having gotten way too little attention during that time, was and still is extremely difficult. When Harry was 2 he got a new baby sister, his brother was in the hospital, and then he got dragged around to all these appointments, because I had nobody to leave them with.
        Of course, I'm convinced that Harry was the best thing that ever happened to Tom, but it's still incredibly difficult. Another thing I've realized recently is that I have taken on too much responsibility for the whole setup, so that I have a hard time having a just Mom / Tommy relationship with him. I feel like his case worker sometimes, and I resent that a bit. I think if I had had someone to help me coordinate the whole package of therapy appointments, to listen to me rant, to take a look at the sibling dynamic etc. It would have been better for Tommy too, because a lot of stress factors for all of us could have been eliminated or at least reduced, especially considering how much more he needs the structure and calm.
        Despite all of this, I'm thankful. I think the most important thing a mom can do is believe in her child, and the rest will come naturally if the support is there. (from my fingertips to God's monitor ;)    

        by bluesheep on Fri Apr 13, 2007 at 03:34:33 AM PDT

        [ Parent ]

        • thanks for talking about this (0 / 0)

          I agree that moms tend to become de facto case workers, and that can mess with the parent-child relationship.  That's a good thing for me to keep in mind.

          The parent support piece seems so important to me, but I think for many families it becomes just another hassle / appointment, to think of coming out to a group during the school day or in the evening.  (I do evening ones and the turnout can be spotty because it's hard to get out of the house at night, but daytimes are hard because of childcare or work schedules.)  I like the group model because ideally parents can connect with others in their situation and provide support.  Is that helpful to you, or would you prefer a more private arrangement?

          I think it would be a good use of resources to have a mental health professional offer in-home sessions once a week or so, for parents to process / vent, or to work on family systems issues (like how Harry is coping, etc.). How do you think you would like to receive the support?  A person assigned to check in with you for an hour or so a week?

          In California, there are "sib shop" support groups for siblings through the Regional Center developmental disabilities system -- but Tommy would not qualify with Asperger's (it's gotta be autism or mental retardation).  

          I agree that believing in your child is key.  I work with a fair number of parents who seem determined to focus on their child's "flaws", which frustates and puzzles me.  I much prefer the parents who insist on focusing on their kid's wonderfulness or who might be in some denial about the seriousness of their child's condition, because kids tend to live up or down to what they see in their parents' eyes.  

          I do try to be realistic with parents about how I see their functioning at the moment, to help us all focus on what we can do to help.  It never hurts me to be reminded to emphasize the child's strengths as well.  I do make an effort at this (made easier by the fact that I love kids and usually have lots of fun working with and talking about them!), trying to imagine how it must sound to the parent.

          Thanks again for sharing your story, and for letting me pick your brain :-)  I am thinking it might be good for me to offer some additional training to parents about how their child's special need(s) might manifest, what to expect, strategies for coping, etc., maybe in a 1:1 appointment rather than support group setting?  It's always a work in progress, trying to juggle my time with the needs of all the kids/families who of course are juggling their own stuff.  

          It's amazing to me that you're coping with all this while living in a different country and learning to navigate that culture.  Kudos to you, your husband and your kids.

          by mamacita on Fri Apr 13, 2007 at 08:42:15 AM PDT

          [ Parent ]

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