Our Autism Story

I will start by saying that I’m not a writer so please forgive my inabilities, I struggled a bit with exactly what to write…here is our story.

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We’ve got two fantastic daughters.  Our older is outgoing and friendly, loves school, her friends and anything to do with computers.  Our younger daughter is one of the most loving children that you’ll ever meet, is full of hugs and smiles and can get herself (and most of the people around her) into the giggles in no time flat.

Our younger daughter was diagnosed with autism shortly after she turned 3.  The signs were there long before, but I was a bit resistant to admitting that something wasn’t quite right.  She was really a dream baby, as the second child, she rarely cried and was happiest when she was being held.  She hit all of the major developmental milestone through the first year.  She was late rolling over and a late walker, but she still fell within the “normal” range.

The first thing that we noticed was around 12 months, she wasn’t pointing or trying to get our attention.  But we didn’t think much about it since she was generally happy and healthy.  Around 18 months, she started into what we thought were the terrible twos with the tantrums.  We were concerned that her language wasn’t developing as quickly as her older sister’s did and her tantrum phase did seem to be lasting longer, but we assumed that with a very talkative older sister, she just couldn’t get a word in edgewise.  We also noticed strange things when she played, she much preferred to line things up in a very distinct order rather than actually “play” with toys.  But again, didn’t think much about it because she was happily playing.  Back then, we didn’t know much about autism and certainly didn’t know that these were classic signs.

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The tantrums worsened and language delays continued through the twos and finally at her three year check-up, I mentioned to the doctor that we had concerns about her developmentally because her development seemed to sort-of stop at about 18 months with few gains since that.  We were sent off for rounds of specialists visits and after completing what felt like 6 feet of paperwork and too many specialist visits to count, we were given the “official” diagnosis of autism.  We then started Speech Therapy, Occupational Therapy and Applied Behavioral Analysis (ABA).  We discovered that the source of most of her tantrums was severe anxiety and, once we got that under better control, she really took off in therapy.  She was able to attend a regular preschool with the help of an aid who was trained to work with autistic children and she is now in 1st Grade in an autism classroom and she’s doing well.  It’s been a long fought battle to get the services in place that she needs for her education and it’s going to continue to be a battle for the next 11 years…as a matter of fact, we’re going to school to battle for appropriate placement in a higher level classroom on Monday!

Our daughter still likes a lot of order in her world and certainly is most comfortable at home.  But we’re slowly able to make some changes to the routine without having a huge meltdown.  We’re hopeful that she’ll continue to progress into a productive adult.  We’ve seen the signs and have been told by therapists and teachers that she is extremely intelligent and we all look forward to the day that she is able to express herself in a way that we can all understand.  We will have to wait and see what the future holds for her.

When people ask me about where our daughter falls on the autism spectrum, I never know exactly how to answer.  She is verbal and able to make her needs and wants known (sometimes too well!), but there isn’t any two-way conversation.  She has a lot of the “classic” autism symptoms…hand flapping, repetitive speech patterns, strange noises, etc.  She is uncoordinated and has poor motor planning, meaning that she can dress herself and do basic activities of daily living, but it takes her a lot longer than other children her age and she often puts things on backward or has great difficulty in simple tasks because she’s not able to plan out the steps in sequence without a lot of training.  Developmentally, she’s at about 3 years old so making good decisions is still difficult for her.  She also has difficulty interacting with her peers, but we’ve seen some big steps recently where she has initiated play with the other children a recess…this is a huge step for her!  🙂

I hope that in sharing our personal autism story that you’ll have a little better understand of what autism is and is not.  The most recent statistic that I’ve seen is that 1 in 68 children is on the autism spectrum and autism doesn’t discriminate, it affects all ethnicities and socioeconomic groups equally.  Our daughter’s autism diagnosis has changed our lives in ways that we’d never imagined.  But we couldn’t imagine life without her or her sister now.

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30 thoughts on “Our Autism Story

  1. Thank you for sharing your deeply personal story. How wonderful to have 2 amazing and beautiful daughters.

  2. Thanks for sharing your story Amy, all those small milestones are such achievements Best wishes to you all

  3. Thank you for sharing your story! I had to smile at your opening statement that you are not a writer because I always think you do such an awesome job of describing your card making in detail & this is very well written–I think you underestimate yourself! 🙂 Have a wonderful day!

  4. After reading your story I think the stamp you made really reflects your family. Thank you for sharing! Debra

  5. Thanks for sharing your family and your blessings. Trials yes, but blessings, for the Lord has given your family a cherished gift to love, nurture and teach you many things. May you find His help comforting and encouraging.
    Thanks for sharing with us your project ideas and tips. Love your card.

  6. Thank you for sharing your journey with your daughter . It reminds me of a stamp that I had to get . “Life (health, children , us) does not have to be perfect to be good.” It is encouraging to know or hear how others get thru life when things do not go as hoped and planned. love, Linda

  7. Amy, I can relate to your family. My 6 year old grandson was a 24 week premie and is very loving, intelligent and sweet. His maturity level is around 4-5 year old. He gets OT, PT and other special classes to bring him up with his peers. As you can tell, I’m not a writer either, but I do feel very blessed to be his Neena( grandma)
    You have a beautiful family! Thanks for sharing your story/family.

  8. What a sweetheart. She is lucky to have such a wonderful, caring mommy and I am sure daddy. It is so hard to understand sometimes why we are given the challenges we get. Our hearts ache for we know how difficult things may be for them. My prayers to you for strength. Thank you for sharing.
    Love and hugs to you all,
    Roberta

  9. Thank you for sharing your story. I am an assistant in an autism classroom in a public school . 8 students grades 1 & 2. They usually stay with us for 3 years. I love every one of them! I have seen them grow so much with learning and socializing with other students. It’s not easy for them but I love my job because of the things we can help them learn. It takes a lot of patience some days. But not as much as a parent with an autistic child. I hope your daughter makes great strides in life like the ones I see with our students. God bless!

    • Thanks so much Sheila! She’s made huge strides this year now that we’ve got the right IEP set up for her. It’s been a long battle with the school system. The teachers have been very appreciative of the extra help that’s been brought in based on the plan we have for our daughter. I have great respect for the teachers at her school, they have put everything into her education…it’s so unfortunate that the school system fights so hard to do the minimum required by law. Hope that your school system works for the kids rather than against them. 🙂

  10. Thanks for sharing Amy. I can only imagine what you have gone through. One of our grandchildren has Asperger’s, one form of Autism, and I know what a struggle that has been for their family. They feel fortunate though as it is a mild case. Therapy has helped but it’s an ongoing thing. Best of luck to you and your beautiful family.

  11. Amy, you expressed yourself very well. It is so important that you advocate for your daughter. I have a grandson who is now 22 years old and his mother (my daughter) was his strongest supporter. He was diagnosed as having Asperger’s Syndrome when he was in preschool. Fortunately more is known about the Autism Spectrum now. His mom fought for his educational rights with all her heart. He will always have his struggles but he is independent and working as a pharmacy assistant.
    You have a beautiful family.
    Take care friend, Karen

    • Thanks so much for sharing Karen! I am fighting and will continue to fight with the school system at every turn. She’s got a right to an education that best meets her needs, not what’s easy. 🙂

  12. Thankyou for sharing your story. I too have two daughters both with intellectual disabilities and yes one with autism. They both are in their 20’s now but unfortunately here they didn’t diagnose her until she was 12. Up until then they diagnosed her lots of other things. If they had diagnosed earlier she would have had more appropriate help sooner. There are so many people with Autism now it needs to be recognised.

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