17 different women, 36 crazy children, 0 babies in utero
Adventures, Advice and Questions from a group of Mormon women who met in Queens, NY and have now scattered all over the place.

Monday, April 10, 2006

The Girlfriend's Guide To Autism

April is Autism Awareness Month. At first glance, I thought the ribbon was designed with puzzle pieces because some autistic kids, like my 3-year-old son Noe, are really into puzzles. Actually, the ribbon "reflects the mystery and complexity as well as the diversity of people and families living with this disorder."

In all likelihood, you know....or will know....a mother with an autistic child. The number of kids diagnosed with autism has reached epidemic proportions: 1 in 166 kids are somewhere on the autism spectrum.

If you know a mom whose child has just received the diagnosis, here is some advice from another mom who's recently been through the autism ringer:

1. Acknowledge Her Loss. Having your child diagnosed with a life-long disability is a terrible loss. When Noe was diagnosed, I felt as though his future had been robbed from him, and from us. I also felt tremendous guilt about these feelings...after all, he wasn't dead or dying. How could I feel such grief? I remember talking to Kage in the mother's room of our Astoria chapel during a Sacrament Meeting soon after Noe's diagnosis. She said exactly what I was feeling...that I had experienced a great loss. That validation allowed me to start grieving...and healing.

Don't worry about saying the wrong thing, worry about saying nothing. I received a wide range of responses, and honestly, I appreciated almost all of them. Some were very somber, "I'm so sorry." Others were more positive..."I've got a nephew with autism and he is the greatest kid...Noe is going to be great!" I didn't want to be alone during that time and I appreciated the support.

2. Build Her Confidence. The only responses that I DID NOT appreciate were in the form of, "Oh...I knew there was something wrong with him." Luckily I didn't hear them very often, but they helped validate my fear that I WAS INDEED the WORST mother in the ENTIRE history of motherhood! How could I have missed the signs? I knew that Noe was a little different from his peers, but I thought he was a "walking-to-his-own-drumbeat" different, rather than "your-son-has-a-debilitating-neurological-disorder" different.

Mothers tend to blame themselves for everything that goes wrong with their children. My self-blame ran the gamut of the possible, "I shouldn't have immunized him," to the improbable, "I should have breastfed him longer," to the absurd, "It's my fault because he fell off the bed once."

Your friend may also be questioning her abilities as a mother. Reassure your friend that she is an amazing mom with great faith and untold strength that will enable her child rise above autism to reach his/her full potential.

3. Listen to Her. Your friend will be facing a myriad of new stresses in the coming months. Potential challenges may include: Finding qualified therapists to work with her child and the financial resources to pay for these expensive therapies; Exhaustion from dealing with her child's autistic behaviors; Anxiety about her child's future; Marital stress (the divorce rate for parents of an autistic child is 80%). Be positive and encouraging, but mostly stay silent and let her complain away....

I certainly never expected any of my friends to solve any of these problems, but I appreciated their willingness to listen.

4. Love Her Child. I was pleased that all of my friends treated Noe the same after his diagnosis and many even asked how they could be involved in his therapy. Possible ways to involve yourself in her child's life include: Learning how to communicate with her child (i.e. using sign language or PECs that the child understands); Engaging her child in meaningful play (autistic kids need constant attention in order to keep them from reverting back to their own world); Learning how to help your friend manage her child's negative behaviors.

5. Educate Her. There is a litany of information and resources available on autism. Your friend will soon begin the oft-overwhelming process of sifting through causation theories and deciding between many different treatment options. Almost one year later, I am still learning new things about autism and its hold on my son, and I am still questioning the appropriateness of the therapies we chose for Noe. Here are some of my favorite resources from my ever-expanding autism library: Overcoming Autism, The Autism Sourcebook, The Out of Sync Child and Thinking In Pictures.

I don't know exactly what Noe's future holds, but I DO know that I would have never survived the past year without my DH, my mom and my Tales girlfriends.


  • Jenni....you are a pinnacle of strength and Noe could not have a better tigress mama then you. I learned a lot through Noe's diagnosis too. It's nice to hear that I was an ok friend during that time. It was just as scary/risky for me, b/c I didn't want to say or do the wrong thing.

    This guide is really helpful, b/c I am running into autism much more. I just met a man with 3 year old twins, one who had it and one who did not. The photos of the twins in his wallet always had one boy looking away from the camera. For him it was "easier" to recognize the signs b/c he had a direct comparison. He told us about the stats...staggering. You parents of autism have GOT to be advocates for more research...this epidemic is truly extraordinary.
    posted by Blogger Kage at 4/11/2006 03:17:00 AM  

  • This was a wonderful post full of enlightened optimism. It's wonderful to hear your story. My youngest son has seen a litany of specialists to diagnose the cause for failure to thrive. So far, we have no overall diagnosis but are seeing improvements in his eating (with Acid Reflux Medicine) which we hope will lead to increased growth and development.

    As we approached the appointments with the neurologist and geneticist, I felt a heavy weight. I went through a process of mourning that sounded similar to the one you have described. I wasn't mourning his death so much as the life that I had envisioned he would have. I was obviously so relieved when we walked away from those appointments without further need to mourn.

    I think the lesson I have learned is that every mother will mourn something about their child or their choices. And I guess it's not so much our vision of their life that is important but their own.

    Thank you again.
    posted by Blogger Maralise at 4/11/2006 08:24:00 AM  

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    posted by Blogger Maralise at 4/11/2006 08:24:00 AM  

  • Thank you for this post, we have seen an epidemic of autism in our own ward. Since I am currently serving as the Primary Choirister, I have contact with all of them. They are great and we have seen big strides with all of them. We have one 5 year old, he's what they call "high functioning", and two little boys in our Sunbeam class. One is a fairly severe case and another with just a few signs/symptoms. We also have one boy in our nursery that has just been diagnosed. Thank you for your advice, I hope we are doing what we can to support these children and their parents. I hope I am able to reach them through the music, they seem to LOVE it!
    posted by Blogger wendysue at 4/11/2006 03:29:00 PM  

  • Excellent post that was well thought out. My 17 year old son was diagnosed as being high-functioning autistic when he was about 3 years old. My sister Carrie brought this post to my attention - an example of item 5 "Educate Her" (or Him in this case). Let me just provide a few thoughts from a Father's perspective.

    1. Acknowledge His Loss. I don't recall considering my son's diagnosis to be a loss. The best way I can describe what I felt when our son was diagnosed is "numb." There were no answers for whether he would learn to speak, go to a regular school, etc. I shook off any guilt quickly because I knew intellectually that my only contributing factor was my genes. The guilt was more of an issue for my wife - I think it's a guy/girl thing. I agree that it is better to say something rather than worry about saying the right thing.

    2. Build His Confidence. While men don't seem to beat themselves up as much as women, I appreciated the many positive remarks my wife and I received about how well we were doing with our son. Progress was often very slow and incremental. We often overlooked the progress until a family member who hadn't seen our son in a few months, or a year mentioned it to us.

    3. Listen to Him. Father's of children with development disabilities may not be talking all that much with other men about it - I didn't. Men don't listen all that well, so what's the point in talking about something so personal? On occasion, women would ask me about my son and they truly seemed to care - that was appreciated.

    4. Love His Child. This is an important one. My son needed good peer examples around him, and other parents to understand his differences and help out. My wife and I don't often agree with much of what Hilary Clinton says, but "It takes a village to raise a child" is especially true with a child with a development disability. I'm convinced that every child, even an autistic one, is drawn toward love.

    5. Educate Him - Tactfully. Like Jen, I appreciated those who passed along information they thought might interest us. My wife and I were frequently too consumed with the day-to-day struggles to pay attention to all the information out there. What I found most beneficial was stories about other families with an autistic child. It was comforting to see or read of others who were having similar experiences. We learned to laugh about the common challenges we faced each day. However, from time to time, I became annoyed with the constantly recirculated information that was provided as a cure for autism. If you pass along information, don't make judgements on it's value or applicability. Better yet, present it in a form of a question. For example, "I heard (or read) such and such about autism - have you heard this before? Is there anything to it?" This approach opens up an opportunity for education to go both ways.

    And one more...

    6. Give Her/Him a Break. We so much appreciated when friends offered to watch our son so my wife could go shopping without being embarassed by our son's tantrums, or so we could go out on a date together, or even get away for a night. We felt guilty asking anyone to take care of our son. We worried whether they could handle him, but we found others (who truly cared) could handle it just fine, and it provided our son with experiences that helped him connect to others outside our immediate family. He needed that.
    posted by Anonymous Jim at 4/11/2006 08:51:00 PM  

  • Jen, you are a powerful, uncompromising, ever vigilant woman and Noe is so blessed to have you for as a mother. Because of Noe, my ears prick up whenever I hear something about autism - I don't want to miss new information that may be helpful to you or him.

    Why is it that we are seeing more cases of autism? Is it because we are becoming more educated and aware of this disorder or is it simply more prevelant? And if it has become more prevelant, why?

    Thank you Jen for your strengh, optimism and openess - this is a great post and you are a great mom.
    posted by Blogger chloe at 4/11/2006 09:21:00 PM  

  • What a great post. As someone with several autistic siblings and many friends who are parents of autistic children, I found it to be very refreshing and offering some down to earth advice.

    Many years ago my older brother was described as an ADHD child and bounced from remedial class to remedial class. Only now do we know that he is simply a very high functioning autistic. It makes many of his actions easier to understand now that we know how his brain differs from ours. I think that many people have always thought of autism as an "all or nothing" disorder. If they weren't banging their heads on walls, they weren't autistic. But as more study has been devoted and more interest shown, I think we've just started to learn how varied the manifestations can be, and are starting to recognize it where we previously could not. Just my two cents though.
    posted by Blogger Mo Mommy at 4/11/2006 09:49:00 PM  

  • Thanks for everyone's comments.

    Kage: That is really interesting about the twin thing...especially since there is supposed to be a large genetic component to autism...shows you how complex the disorder is.

    Maralise: What you said about every parent "mourning" their child at some point was really profound...I guess some of us do it earlier than others ;-)

    Wendysue: The numbers in your primary are really astounding... you do have a really important calling for these kids in teaching music...I know that my own son responds really well to music (i.e) he does all of the motions to Itsy Bitsy Spider and Popcorn Popping...even if he can't sing the words. I can tell he is engaged when we sing together.

    Jim: Thanks for your comments from a father's perspective. Your wife was a huge support to me over email during the first few months and I appreciate that a lot! In some ways, I think the fathers have a harder time of it because they can't talk to their male friends about it as easily. I know my own husband struggles a lot...he hasn't even told his parents yet.

    Chloe: Thanks for your comments. Nobody knows exactly why the cases are up. They definitely are better at diagnosing it..so that is one reason. Other causes that are popular now: the whole immunization controversy, environmental pollutants, and "Silicon Valley syndrome".... more men and women w. scientific minds are marrying...and the combo of their genes gives them a higher chance of having autistic kids. I don't have a scientific background, but my gut says there are more than one cause...mostly because there are so many different degrees/varieties of autism.

    Momommy: That is interesting
    /unfortunate about your brother being misdiagnosed. I've heard that ADHD and autism are very interrelated, so I guess it makes sense. I, also, had more sympathy and understanding for my son once I understood that he wasn't doing some of his behaviors intentionally.
    posted by Blogger Jen at 4/12/2006 08:03:00 PM  

  • I guess now we know who said:

    "I've got a nephew with autism and he is the greatest kid...Noe is going to be great!"

    I really do have the coolest nephew who also has autism. But, I also wasn't there to see all the struggles my brother and sis-in-law went through in the beginning. I just get to see the good parts.

    Jen, you are an amazing woman and I am so glad that you are not only helping yourself and your son, but are helping everyone understand autism a little bit better.
    posted by Blogger TftCarrie at 4/14/2006 10:07:00 AM  

  • Jen, thanks for your thoughts. Having a child with special needs is an amazing journey, isn't it? You never know or can imagine you know how it would be to mourn for what you thought your child would be someday, until you're there- mourning and trying to make sense of it. My almost 4 year old daughter has Turner Syndrome. She's my only daughter. She will never have her own children. She has had one heart surgery and will likely have another surgery within the next few years. There's not a day that goes by that I don't think about it. BUT... she's a joy, she's the light of our lives. And we know she was sent to our family for a very specific reason. I agree with saying SOMETHING, ANYTHING- rather than not acknowledging the issue. I know we would not be where we are today without the support of our family members (zinone!) and friends... and of course, most of all, the Lord. Bless you, you awesome mom!!!
    posted by Anonymous Anonymous at 4/14/2006 07:58:00 PM  

  • (I'm just finding this blog- so I apologize for comminting so long after the post.) I really appreciate the comments and the original blog. I have a child with auism, and it is so good to see/hear from others who are delaing with the same things, and all those out there who love and support us and our precious kids no matter what!
    posted by Blogger AJ at 6/30/2006 08:44:00 PM  

  • I too am just finding this blog and came across this post about autism. My heart is breaking as I recognize ALL of the signs in my beautiful four yr. old grandson, but my son and DIL refuse to believe that anything is wrong and say that he is just "doing his own thing". I am so frustrated trying to get them to recognize the signs and get him some help.
    posted by Blogger Lois at 7/04/2006 04:59:00 PM  

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