Mar
05
2010

Dealing with an Autism Diagnosis

by Kimberlee Stokes Affiliate Link Disclosure B

Dealing with any negative diagnosis of a child is a painful experience for a parent, but an Autism Diagnosis can be even more difficult because there are so few answers.

We found out about my son’s Autism Spectrum Disorder three years ago. I have known for years that my son was “different” and I have had him tested several times through the public school system.  We even went to a private psychologist for testing, but unfortunately I chose the wrong doctor and our visits did more harm than good.

Finally,  I found a specialist who accurately diagnosed my son with NonVerbal Learning Disability and Aspergers, which is an  Autism Spectrum Disorder.

I was relieved to finally have an answer, but overwhelmed by the repercussions.   The doctor recommended that we continue home schooling my son (which we had done for 2 years at the time of the diagnosis) and that we add occupational therapy for his sensory integration issues.

I remember feeling lost and frustrated.  Our insurance would not cover the therapy and the closest therapist was many miles away from our home.  It was a difficult time.

I also felt alone.  At that time there were no well-known autism groups and I knew no way of finding any.  I had to pray and figure things out on my own.  I had a grieving process to go through knowing that my son would probably never be “normal”.  Other parents have even more difficult situations than ours.  My son is at least functional in daily life, but it is still a loss of my expectations and dreams of what his life would be like.

Now years later I can say that we are doing much better.  I have an understanding now that the things that bother me about him are really out of his control.  We still have our days when things are difficult.  I still sometimes grieve that my son has these issues, but I also realize that God made him for a special purpose.   He will use everything in my son’s life (whether I see it is a strength or a weakness)  to make him the man he is supposed to be.

{ 12 comments… read them below or add one }

Rebecca March 24, 2012 at 4:00 am

Thank you. I found your site not too long ago. I subscribed because I noticed you addressed Asperger’s. My son was diagnosed almost 2 weeks ago. I keep telling myself this is not “bad” news. Yet I am overwhelmed and, yes, grieving a bit.

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Kimberlee March 24, 2012 at 9:06 am

When I first got the report from the testing, I opened the envelope, read through the results quickly and then put it away for months because I just didn’t know where to start. I think the most helpful thing for me was reading as much about it as I could and trying to change anything that I could change (diet, adding supplements, making sure he got enough sleep, etc.). I’m sorry you are going through this.

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Lauren April 9, 2012 at 1:09 pm

My 4 year old son was also diagnosed with autism (not Aspergers, specifically) about three weeks go. I’m so glad to see that someone understands the need to grieve for “normal” and the future you had planned for your child. I too had a period of denial, feeling sure the doctor was wrong.

My son is mild-moderate, but I have stopped telling people that because they seem to think, “Oh. No big deal.” One well-meaning friend actually told me that “it’s not the end of the world.” I know it isn’t, but it still stinks. And I am still sad. I will be keeping up with your blog now, for multiple reasons (tight finances, you know) but I am excited to see the journey you have been on with your child and how you deal with it in day-to-day life.

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Kimberlee April 9, 2012 at 4:04 pm

Laura, I am so sorry about your son’s diagnosis. For me the grieving was similar to grieving a death, more intense at the beginning, then mellowing some only to be triggered by certain events or issues that came up. With each new stage of my son’s growth I have had more grieving, but it has definitely improved. You can find lots of support on line if you have time to search. I haven’t joined any groups, but I have seen several over the years.

Welcome to the blog, and feel free to ask any questions you have. Blessings!

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ann-marie mackay April 17, 2012 at 6:27 pm

my son (age 7) was diagnosed as having Aspergers by a pediatrician last summer (we had been seeing the Ped for 2 years for ADHD issues/medication etc).
Now I’ve had him seen as part of an ASD Study group and the Dr there is saying he doesn’t meet the criteria of Autism at all…I thought I was finally coming to terms with things (i didn’t process it for a few months and then during a stressful time with life/Church, I let it all out at once).
I feel lost again.

BUT, one thing I just gained from reading this post of yours–no matter what “label” my son has, it doesn’t change his behaviours. Remembering to be pro-active, to understand the things he does/doesn’t have control over, will serve us both

Thanks for your blog :)

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Kimberlee April 18, 2012 at 12:21 am

That is so good Ann-Marie–it doesn’t matter what the issues our children have are labeled. We just have to do our best to help them through it. :)

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Robin May 3, 2012 at 6:02 pm

WoW! We have alot in common.My 12 yo son was also given an Asperger’s diagnosis. We have been going to occupational therapy for 18 months. We also homeschool. I still have such a mixture of emotions wondering exactly what this means for his future. Will he ever marry? Go to college? Be self-sufficient? Some days, I see so much improvement in his sensory issues. And other days, not so much! One thing is for certain…. he was created by God for a special plan and purpose. I cannot wait to see that unfold.

I love the blog!

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Kimberlee May 3, 2012 at 6:38 pm

Yes, he was created for a purpose! Blessings to you as you walk this path. I’m glad you’re here. :)

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Claudine WIlson June 14, 2012 at 6:48 pm

Hello! I am new to your blog, and stumbled upon it through a pinterest link to your $ saving ideas. I admire your blogging skills and really envy some of the adorable things you have made! My son was also diagnosed with Asbergers when he was 3 (he’s 4 now), so you can imagine my surprise when I stumbled upon the tab on this site while looking for “crafty” things to do with the spare time I don’t have..LOL Anyhow, I just wanted to take a minute to tell you that you seem to be a very “together” lady and your family is super lucky to have such a dedicated woman for a mom and wife. You are creative, insightful, extrememly talented and a master at working with the gifts God has given you. Please keep up the good work!!

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Kimberlee June 14, 2012 at 8:45 pm

.Wow Claudine–thanks so much for your kind words! I am so sorry that your son has Aspergers and I pray that you will find some encouragement here. :)

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Rhonda Dahlgren June 28, 2012 at 5:04 pm

:) my son was diagnoised with Aspergers and pervasive developmental disorder when he was 5. He will be 14 in August. I knew there was something different with him. I was given a diagnoises and then just left to flounder on our own without supports. My son is one of the smartest people I know. This past November my son was also diagnoised with Juvenille Dermatomyositis. It is a rare autoimmune disease. We have been tested every which way we can be. I get so frustrated by the black and white thinking of my son. And the melt downs that he has when things don`t go his way. I feel alone in this. And I am greatful that I have found your blog.

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Kimberlee June 28, 2012 at 6:49 pm

Hi Rhonda!

I am so sorry that you are having to deal with all of that. It is frustrating because there aren’t a lot of answers. I’m so glad that you feel welcome here and just let me know if you have any questions. :)

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