True Story: My Daughter Has Autism

How do you navigate life when your daughter has Autism? What's life like with an Autistic child? Click through for one family's story.

Tell us a bit about yourself!
My name is Rachel. I turn 30 this year and I’ve been in the Twin Cities since 2005. I work at an insurance agency in the commercial lines department. My free time is somewhat limited, but when I have a couple moments, I read. It’s something I especially love to do with my daughter, Lily!
When did you realize that your daughter was different from other children?
This is a tricky question, because when it comes to Autism, there’s a lot of denial. If I’m really honest with myself, I think we first suspected (at least subconsciously) that something was different with Lily around the time that speech is expected to be reached.

Our situation was somewhat unusual at that point in our life: mine and my husband’s work schedules allowed for us not to need daycare. We weren’t conveniently located to friends or family, and because we literally ALWAYS worked, we had absolutely no social life and were somewhat isolated.
Since Lily was able to express her needs to us- or, at least, we were able to understand her, we assumed that the fact that she had a limited vocabulary was circumstantial. Plus she was hitting all other developmental milestones at the right times.
We even expressed our concern to her pediatrician around the age of 18 months. But because there was enough wiggle room at that age, when her doctor advised us just to keep an eye on it, that’s what we willingly did. When she was three we relocated and (because my work situation changed) Lily’s involvement with other kids her age changed.
We couldn’t ignore the fact that, at the age of three, she wasn’t speaking on par with kids who were two. That’s when we made the decision to pursue professional involvement. A lot of the other telltale signs (avoiding eye contact, repetitive behaviors, etc.) developed later.
How did you feel when you heard her diagnosis?
Initially it was anxiety, anger, shame, frustration. People are afraid of what they don’t understand. We had heard the word “autism” tossed around and pictured Rain Man or assumed it was the new “trendy” illness. But as we learned more about it (and we are still learning- we will never stop learning) the more accepting of it we are.
Lily just perceives the world differently. Once I acknowledged that, I was able to move forward and make Lily’s life as happy and comfortable as possible.
Where does your daughter fall on the Autism spectrum?
She is considered somewhat high functioning. She talks- a lot of it is echolalia, but she is getting better at communicating in a more typical way. She has sensory issues. Certain sounds can set her off into a meltdown (crying babies for example).
She’s very affectionate, which I’m extremely grateful for as a lot of people on the spectrum have tendencies to not want to be touched. She loves animals- especially our two cats, Steve and Ben. She loves to help her Daddy cook and bake: she’s really good at it too!
How are you dealing with/treating her Autism?
Lily isn’t on any medications at this point in her life. She goes to a public preschool for about three hours a day, four days a week which has replaced her Speech and Occupational therapy which we originally were doing through her doctor’s office. Her teachers and Paras have just been amazing to work with. We’ve been so lucky to have them.
We’re also exploring other options like potentially getting a service dog. There are some great organizations out there who train autism assistance dogs. So we’re hoping to be able take advantage of that at some point.
How has your daughter’s diagnosis affected the rest of your life?
I never imagined that I would be the parent of a child with special needs. I’m fortunate that the office I work in is extremely understanding. I’m tremendously grateful for that. My husband and I realize that we have more challenges than some families will, but we don’t feel sorry for ourselves or anything.
We’re like any other mom and dad in that our goal at the end of the day is to make sure that Lily knows beyond a shadow of a doubt that we love her unconditionally and that we are proud of her because she is an amazing person.
What do you think adulthood will look like for your daughter?
I’m not sure. At this point, there is a possibility that she may live with us longer than most people would. I feel that we (as a society) are making a lot of progress with the overall acceptance of what Autism is, so who knows? There is no doubt in my mind that Lily will be just as awesome as an adult that she is as a kid.
Do you have other children? If so, how has your daughter’s Autism affected them?
We don’t have other children- Lily is all we wanted! 🙂
What advice would you give to other parents whose children have just been diagnosed?
Definitely get as much support as possible as soon as you can. Accept that it will be a challenge, but know that the rewards are tremendous. Autism isn’t a death sentence- it’s just a different route.
Thanks so much for sharing, Rachel!  Do you guys have any questions?  Do any of you have  Autism or friends/family with Autism?
Photo by Simon Rae on Unsplash

22 Comments

Jess B-E

I was just about to say something about this – it pains me that parents sometimes end up blaming themselves for causing autism in a child because they had them vaccinated, when the study that claimed this link has been completely discredited.

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meliasaurus

Thank you, I was going to post something similar. The study was declared to be a total fraud, even the creator Andrew Wakefield said that he made it up. I can not believe that there is still a media frenzy/ rumors because of a lie someone told over a decade ago. 🙁

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Jamie

Sarah, PLEASE do not continue to perpetuate this malingering fallacy.

Vaccines do NOT cause autism; this has been THOROUGHLY discredited, as was stated above. PLEASE don't bring up vaccines and autism. It's a lie and it needs to die a quick death.

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LanikaVivian

Yeah, that one question, and Rachel's reply, made me thoroughly uncomfortable. I understand every parent has their own way of thinking about their child's autism, and that everyone is entitled to their opinion, but there is incredibly substantial evidence stacked against the "link between vaccines and autism", and it is so easy to find with a quick search of peer-reviewed articles.

Other than that, I found this to be a lovely and honest piece. I really feel that no Autism story is the same, and as the proud big sister of two brilliant young men living on the spectrum, it always gives me the warm fuzzies to see Autism be discussed with an open mind.

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Sarah Von Bargen

Lanika,
I think it's a question worth asking because it's something that many people (mistakenly) assume. I think if I hadn't asked the question someone would have asked it in the comments. I wasn't saying that I see a link between the two, I was asking Rachel how she felt and giving her a platform to dispel myths or state her case.

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Rachel

Thank you everyone who provided feedback with regards to the vaccine debate. It's still a touchy subject and I'm glad to see that people (even people who aren't affected by Autism) feel strongly enough to speak out about it. After having done more research, I can clarify my answer: I don't think that there is a link between the two. I was reluctant to state a strong opinion one way or the other because when Sarah interviewed me, we were still processing a lot of information about Autism along with all the speculation around it and I didn't want to appear ignorant (which, I suppose, I did inadvertently anyway).
And for the record: Lily is current on all her vaccinations. 🙂

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Cat

Really interesting interview, sounds like a family with a lot of love for each other 🙂 However I can't let the question of vaccination and autism go past without ensuring it is made clear that there has NEVER been any plausible evidence linking the two: Andrew Wakefield's article in 1998 that started the controversy was proved fraudulent (falsification of data etc) as discussed here http://www.bmj.com/content/342/bmj.c7452 and he has since been struck off the Medical Register. Much more recently, in 2012, the Cochrane Library (the most reliable source of medical information) reviewed all available evidence, covering over 14 million children, and found no credible evidence of involvement of MMR with autism. Unfortunately Wakefield's dishonesty and people's understandable worry for their children still has an effect on vaccination rates, leading to disease outbreaks and even disability or deaths of unimmunized children from preventable diseases-an outbreak of measles in Wales has only just been declared over on the 3rd July 2013. I absolutely respect the every parent's right to question the medical interventions given to their child, and believe the medico-pharmaceutical industry should be a lot more transparent, but I would hate for other parents to be influenced by anything other than the facts, as every refusal to vaccinate a child puts not only them, but their whole community in danger.

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Jodie van de Wetering

I'm always kind of sad when I read posts like these, and see questions like "do you have any friends or family with autism?", because of the implication that I, as an actual autistic adult, don't have anything to add to the conversation and am not really welcome. It's great to share stories like these about autism – the more real life stories we can get out there to combat the misinformation and hysteria, the better – but please don't assume you have no autistic readers.

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Rachel

I would be very curious to hear how adult life has been for you, Jodie! Maybe it's because my child is just that- a child- but I feel like there's a lot more focus on children with autism than adults & teens. This is helpful for me, obviously, but must be very frustrating for those who it doesn't apply to. If you felt like sharing your experiences with me, I'd love to hear about them! 🙂

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Celebrating the Day

I am a behavior therapist for kiddos with autism, and I love, love, LOVE seeing it talked about more regularly. Thank you for featuring someone so closely impacted by this growing epidemic!! I love having discussions about autism, as I am completely fascinated by my clients every single day at work. Talking about it (and awesomely writing about it in more unexpected places) really helps people like me, who work with individuals with autism everyday because it spreads awareness to people who are not so in tune with these kids. When my client is having a temper tantrum out in public, and their behavior plan insists I ignore their attention seeking behavior despite stares and whispers, it is so refreshing to see people giving me smiles of understanding or little words of encouragement. I am finding more and more people "get it," which I hate, because I wish no one had to be familiar with autism, but I am so thankful for posts like this. You rock, Sarah!

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Sara Rose

I have two degrees in child psych. One would think this would prepare you for the signs that your youngest is starting to show as clear patterns towards autism, right? Not entirely. I wouldn't say my husband and I had/have denial over our son, Owen, but we really weren't keen at a label/a diagnosis/a bunch of pills being thrown at him instead of solutions, coping skills, etc. He's a high functioning kiddo too and they have to retest him between the ages of 5-6 here, which I agree with, but I know how tired I have been some days (and nights), how to the point of tears I have been as I work as patiently as possibly with him so there are no meltdowns and everyone has a smooth day. It's always good to hear another person's tale who is grounded and trying to find their own bit of sunlight for their family every day too. Good job, mama.

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Kate - Crazy Lovely Me

Rachel, I'm interested to know if you've considered trying or have tried any dietary changes for Lily? I know a family who have a daughter who is autistic – her symptoms actually managed to improve fairly drastically once they switched her to a gluten-free diet. Another dear friend has a little boy who has never officially been diagnosed, but I'm not sure they've ever taken him to be evaluated – he's high-functioning but couldn't say more than a handful of words until he was about four (while his younger brother surpassed him in verbal skills) and still progresses at a much slower rate than any of his brothers. They recently put him on a gluten-free dairy-free diet and according to his mother his schoolwork has improved dramatically and he's speaking more. I think autism is a very strange disease but I sometimes wonder if the connection might be to diet.

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Rachel B (Lily's Mom)

Hi Kate,

We have made some small dietary changes and haven't seen any strong results. We are doing some more reserach into the gluten-free option, but haven't started it yet. My husband loves to cook, so he's always up to the challenge. I've met other people who have said that they've seen a lot of improvement with that switch, so maybe we will too! 🙂

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Kathryn

Loved this interview, and I really appreciate Rachel's authenticity. I've had several friends and worked with a bunch of kids that fall on the spectrum, and it's amazing to me how many different ways autism can manifest.

I highly recommend the documentary "Autism: The Musical" http://www.hbo.com/documentaries/autism-the-musical/index.html#/documentaries/autism-the-musical/index.html I rented it on Netflix, but you may also be able to stream it on iTunes and Amazon. It's a really lovely story, and well worth the watch.

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Creole Wisdom

Thank you for sharing a lovely story about a lovely family. Having a child with a disability is a great fear of mine (I'm sure I'm not alone). One of the beautiful things about blogging is reading the stories of how families and parents have been triumphant over these fears and learned to live their lives authentically and full of love.

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Real Men Coupon

Our 11 yr old son is very high functioning PDD-NOS as well as many co-morbid conditions. We used to be able to talk him out of his meltdowns and refocus him on something else, but over the years he has regressed to the point that he becomes non-verbal during his meltdowns so it is 90 minutes of restraining him so he doesn't run off, hurt himself, or others. Because of that we stopped going out unless we had to, we also began the process of getting a service dog.

It took us almost 2 1/2 years but we got his service dog in May and it has been better than we could have hoped. His meltdowns now are he has a flare up, the dog reacts, disrupts it and refocuses him on the dog, and then calms him to prevent it from flaring back up. He has not had a meltdown last 5 minutes since we got the dog. Also he has started to self regulate and use the dog to calm himself when he starts to feel overstimulated. Plus the peace of mind knowing the dog can track him if he ever runs off (he's run out of the house 3 times before we had the dog).

The service dog is not a cure, it is just a tool to help manage it. It is a lot of work and may not help everyone, but for us it has opened up the world to him.

As far as diet we have not seen much difference with gluten vs gluten free, but we can always tell when he has had red dye, much more aggression and anger, so we limit red dye as much as possible.

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