Autism is a very real condition which affects so many families that you’ve probably heard of it at least once. It’s life changing and eye opening. But not enough people really understand it, or know what it’s like to have a loved one with autism.
I interviewed my friend Brienne who has a son with autism. I wanted to know what their daily life is like, what it was like to get that diagnosis, and what a mom has to say about life with autism. My hope is that we can reach more people so that they understand that having autism does not make you less capable, less lovable, less worthy of love and respect. People with autism are people too, and they deserve to be loved and respected like everyone else! So have hope and be kind, always.
Names have been changed to protect privacy.
Tell me a bit about your background.
I grew up in a military home – meaning we moved every 2-3 years. It was really hard for me because I tend to really connect to places/ people. But it also helped me develop a healthy sense of adventure, and how to really put myself out there to make friends. I was homeschooled from 7th grade until graduation, but it always felt like more of a freedom to be social rather than a barrier of all things social. I met my husband in college September of my freshman year and we got married in Mississippi about a year and a half later. I’ve always wanted to get married and have children more than any job/ career. We had our first baby about a week after our first anniversary. 6 months later I was pregnant with our second! I was too excited to be overwhelmed. 3 years later we had our third.
And tell me about your kids! My oldest is 7, and extremely theatrical and high energy. He can tell a story like no other and he’s always looking for ways to create new inventions or explore new places, especially in nature. He talks a lot as well.
Our middle child, Nathan, is a beautiful, bright eyed, affectionate and joyful boy who is nonverbal and autistic.
Our third is a little sassy two year old boy who thinks he can do everything his big brothers can, thank you very much!
How old was your child when they were diagnosed with autism? What was that experience like?
Well, he was 18 months old when we started to suspect that something was off. One day, just sort of out of the blue, I would call his name and he wouldn’t look at me. I made sounds and he wouldn’t turn his head. Honestly we thought he must have a hearing problem at first. Because he seemed so normal other than that. I mean he was quieter than our oldest son, but we just kind of thought he was going to be the laid back one. So we took him to get his hearing tested. They ended up having to do a sedated test because he wasn’t at all cooperating with the normal one. He aced the test and before we left the hospital, they sat us down and told us they were referring us to “First Steps Mississippi” which is basically a program that provides whatever therapies are needed until the child is three, and able to receive services from the school system.
So we started therapies. He was getting speech, aba (applied behavior analysis), and occupational for a while. Eventually he was evaluated by the child development center that we were referred to by our then pediatrician, and they told us they suspected autism, but they did not diagnose it until he was three years old.
The first thing I felt was a strange mix of relief at finding the proper diagnosis, and grief. There is absolutely a grieving process that you go through when you find out your child will perhaps never be like other children in many ways. There are so many what ifs- will he need to live with people who help him forever? Will he ever speak? I cried. I still sometimes do because I just don’t really know what the future holds for him.
Describe autism in your own words.
Autism is a difference in thinking, perceiving, and processing. It is no less than neurotypical, it’s just different. It is a huge spectrum that means many different things for many different people.
What does “a normal day with autism” look like in your house?
I wake up when my alarm goes off (if not before; my husband has an hour long commute to work so he leaves rather early… Also, especially when he’s getting sick or struggling with really anything, N tends to wake up at 3 a.m. for the day on random days). I drag myself out of bed, get myself ready, then wake N if he’s not already awake. I change his diaper (yes, he is still in diapers at five years old; it is incredibly difficult to potty train some autistic children) and dress him (he’s still working on learning how). He can’t tell me how he feels or what he wants to eat, so I’ve become an expert at reading his signals and the sounds he gives me. He has a lot of sensory issues regarding food, so we make sure to keep plenty of what he will eat in the house all the time. He usually eats at least a little bit and I take him outside to get on the bus around 7 a.m. (he gets bused to a school across town because it’s the one with the best services for him. I hate that he has to do this but I don’t feel I have much of a choice.)
He is at school, mostly in a special education classroom setting, then gets dropped back off at home around 4:30. He’s generally pretty happy around this time and occasionally naps on the bus. He plays with kinetic sand or stacks waffle blocks and probably watches a bit of tv, while dinner is being prepared. Most nights we do have to fix him an alternate meal from what the rest of us eat. He tends to eat better when he can come and go from the table a bit. Usually he won’t eat a very large amount. He plays a bit longer and we put him to bed at 7:30 after brushing his teeth, making sure he’s changed, and tucking him into bed. It takes an average of 45 minutes for him to fall asleep on a normal night but if something out of the ordinary is going on (if he’s getting sick or whatever) he may stay up later and cry/ fuss/scream until one of us sits in there with him for a while. And that’s a school day.
A day off school may include him making a lot of messes because of his sensory needs (I provide clay and kinetic sand but the sand gets everywhere and he likes to make the clay into little balls).
He’s an absolute joy to be around most of the time and will happily entertain himself, but much like a younger child, he needs a good deal of supervision. Especially outside the house. I’ll be honest, I rarely take him to outdoor parks because he tends to run around with no discretion (won’t think about staying close to me while he plays). And when I do, I am watching him like a hawk.
How has the diagnosis affected your parenting?
I’ve always been very careful, but I’m much more of a mama bear type now. I’m his main advocate and I take extra precautions to ensure his safety. I do a lot of over-thinking to make sure situations are safe for him, and I’ve become more able to live in the present and enjoy the children and life I have (though there are frequently times when I’ll worry!).
What’s the most difficult aspect of having a child with autism?
I’m not sure if it’s the lack of understanding in the world or just the fact that it’s a bit harder to connect with him in some ways. I ask my seven year old what he wants to eat and he’ll tell me. I ask my two year old and he’ll generally do the same. I ask Nathan and he takes a lot longer to process the question (if he’s able to at all – if there’s too much going on, he has trouble focusing on one over the others). Then he’ll take me by the hand and lead me to get him a popsicle. Because he doesn’t necessarily understand that it’s dinner time and he needs real food. If he gets an injury, we have to fight him to bandage it and he will take it off as soon as he can. He’s in diapers and does not care if he’s pooped or peed so I have to regularly check. He is extremely clever and quiet and that can lead to difficult situations as well.
Do you have a team of specialists? Do you have to find a certain kind of pediatrician? What does your medical appointment or therapy schedule look like?
Back in Jackson, Mississippi, we had a good team. Child development center doctor, pediatrician, ear nose throat doctor, occupational therapist, speech therapist.
Ever since we’ve moved we’ve made do with the pediatrician and therapists at the school and that’s working for us. You don’t have to have a specific doctor but I always find one who will really listen and who treats Nathan like a normal person, but who is also sensitive and willing to work with Nathan’s discomforts.
Has anything about the diagnosis, or life with autism, been surprising or unexpected?
Oh yeah! Before we knew about the autism, I had no idea how incredibly affectionate and sensory seeking a child on the spectrum can be! Nathan loves hugs, kisses, getting people to tickle his tummy, and just giving looks that say he loves us. He may not have the proper connection to enable him to form words yet, but there’s a ton he understands. He is very empathetic. And very clever. His teachers have said [the intelligence] is all there, we just need to figure out how to get him to connect to the words.
How do you take care of yourself to ensure your cup doesn’t go empty?
This is a pretty tough question. Honestly, I struggled with that for a long time. I make sure I allow loved ones to help me. I have learned to be easier on myself housework-wise (it’s more important and more fulfilling to hang out with the kids than to finish ALL the laundry). I make sure I take my medications and supplements every day and that I can go take exercise classes at least a few times a week. I also take time to just be by myself for a little while most days (once my husband is home from work), perhaps give myself a facial or do a conditioning treatment on my hair. I also make sure I can really talk out my worries and struggles with either a counselor or a friend or family member who I know cares. I also occasionally just have to sort of “hibernate.” it can be socially exhausting just to be around the kids sometimes, and there have been times where it’s much easier to stay at home than to stress out about taking the kids somewhere where I know I’ll have to be exceptionally aware and stay right with Nathan and my two year old, not to mention my seven year old who usually stays with me/in my sight but is starting to crave more independence.
Do you have any goals (short and/or long term) for your child?
My biggest goal is to really just continue to let him know he is completely accepted and loved no matter what. I would also love to find him friends who will play with him. His brothers will but most other kids (though they’re very accepting and nice) just aren’t sure what to make of a kid who doesn’t talk.
What do you feel is the most important thing someone can do to help and support a family with an autistic child?
I’ll say it again, acceptance. Treat us like you treat other friends. Include us in your activities. Be understanding of the fact that Nathan is still in diapers, doesn’t quite understand all the social norms, but he’s still very loving, sweet, and clever and he LOVES being around other kids.
What is your hope for increasing autism awareness and acceptance in society?
My hope is that we can educate more children and adults about autism and other disorders and work to erase the stereotypes about them. They are, and absolutely can continue to be functioning members of society. They just think and see things in a completely different way.
Give me one sentence to explain what you want strangers to know about your life and your child with autism.
Our life is full of challenges that many children of his age either do not face or have not faced since they were infants, but our life is also so much more full of love and joy simply because Nathan exists.
If you’ve read this, I hope that it gives you some insight into one of the families who are affected by autism. It’s still a very vague diagnosis which can mean a thousand different things, but I love how loving and attentive Brienne is. I knew that getting her responses out into the world would really help raise awareness, compassion, and understanding of life with autism.
Thanks so much to Brienne for opening her heart to me so that we could reach more people.
Have questions? Want to learn more? Feel free to leave a comment here or check the autism resources listed below. And thanks as always for sharing this out!
Resources to Learn More About Autism and Support Research Efforts
Autism Fact Sheet from National Institute of Neurological Disorders and Stroke
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