Anxiety · Autism

Autism and Anxiety: Making The Decision To Medicate

It’s probably time to think about a prescription for something to help ease his anxiety,” the doctor said carefully. She looked me straight in the eyes and said, “If he is being buried in overwhelming anxiety attacks, he won’t be able to learn what he needs to learn to help his body function.”

Part of me was relieved. Most of me was ashamed.

I am committed to being as open and honest as possible here about the reality of our lives. It’s what I want to know from other moms – what’s worked and what hasn’t. If we are not going to deal in truth here, I would rather not write at all.

That being said, I have totally avoided this topic…until now.

Choosing to put your child on medication that affects their brain function is a deeply personal, painful decision. It is also one that is often met with judgment and criticism, even from other mommas – especially from other mommas – who are dealing with a similar diagnosis.

But I think it would be wrong for me to share all the success we have had this year with occupational therapy and all the progress we have made in our home, without also including this one, super sensitive, intensely personal fact –

My son takes anti-anxiety medication. Every day.

The first time medication came up, it was before we even had his autism diagnosis. A therapist was discussing all of the meltdowns we were having, and trying to give us meditative techniques to use to help calm him down. When I asked her how we could even start these techniques when, once a meltdown started, it felt like we couldn’t reach him it all, she responded bluntly.

If all you want to do is medicate him, there are plenty of doctors who will drug him up. I am trying to help you really help him.”

So you know, no judgment.

I wasn’t even asking about meds at the time, but it didn’t matter. I felt the burning sting of shame associated with medicating my child – the message was loud and clear. Good moms work harder to help their kids. Bad moms just take the easy way out and medicate them.

Ugh.

About six months later – about 400 meltdowns and broken glass and bruises and bite marks and not leaving the house for days and cleaning up carpet after carpet and his head banging against the wall for hours upon hours later – the developmental pediatrician was the one who brought it up.

It’s probably time to think about a prescription for something to help ease his anxiety,” the doctor said carefully. She looked me straight in the eye and said, “If he is being buried in overwhelming anxiety attacks, he won’t be able to learn what he needs to learn to help his body function.”

I nodded.

She said, “We will start off very, very slowly. The amount of his prescription will be a tiny fraction of the full dose.”

I nodded.

There is no way to find out if this will help him if we don’t try,” she said.

At this point, ” I sighed, “what do we have to lose?

 

Autism and Anxiety: Making The Decision To Medicate

It took a few months and eventually changing from one medication to another, to see any results. (In fact, how we finally got him to even take the meds with all of his taste and texture sensory issues is a whole blog post of its own.) But when we did, it was amazing.

He smiled.

He laughed.

He had conversations with me.

He ate.

He played.

He actually enjoyed time with us.

Friends of mine had asked me several months before the diagnosis what the hardest part was. They were so sweet, and they wanted to know how to help.

Through tears, I barely choked out, “I feel like I lost my son. He’s gone and I can’t get him back.”

It was the most honest I’d been about the heartbreak of dealing with the meltdowns, day in and day out.

When the meds began working, they brought him back.

The doctor was right. Anxiety attack after anxiety attack, every single day, was getting in the way of helping him with all the other things he was dealing with. Soon after the anxiety eased, he began being able to communicate a bit better about how his body felt and what he needed to self-sooth. He started actively engaging in occupational therapy, and made tremendous strides in learning to manage his body and it’s sensitivities.

He started to be able to be a kid again.

Your child is not my child. You may have a very different set of needs and a different set of symptoms. Medication may never be the answer for your child.

The thing about brain chemistry is that everyone’s is different and uniquely their own.

I am not sharing this to encourage the use of medication in eleven-year-olds. I am not sharing this to celebrate it as the end all be all in symptom management.

I am sharing this because you might be considering medication for your child and feeling ashamed, judged, and less than.

You will get none of that here.

We do the best we can, in often horrible circumstances, for our children.

Sometimes, that means medicating them.

Sometimes not.

Either way, you’re the one I trust to make the best decision.

 

29 thoughts on “Autism and Anxiety: Making The Decision To Medicate

  1. I desperately wanted something for anxiety. We tried several meds that didn’t work. Indeed even made him worse. One of the reasons we homeschool is because his anxiety at school is so high it seems he can’t function. Unfortunately, medication didn’t work for my child. Homeschooling is working, but he still struggles anywhere outside the home. I know he lays down a lot at church and doctor’s offices. I believe he is reaching for the pressure from the floor to help calm him. We try a weighted compression vest and it only helps some. He still lays down a lot. I can only pray time will help us find other ways to cope.

    1. Oh Becky, I am so sorry. When the first round of meds didn’t work for us, I was heart broken. I am praying right this minute that some relief for your son will come, and that you will feel a peace and calm through it all.
      You are not alone.
      Love,
      Shawna

  2. My child is 7 yrs old. She has been diagnosed with Sensory Processing Disorder, Oppositional Defiant Disorder and Generalized Anxiety Disorder. She is on several medications due to several diagnoses. I didn’t “want” to medicate her but I knew that she was miserable. I didn’t have a child to get “back” because she was a difficult baby that grew into a difficult child. But when we started trying medications I was finally able to “see” the real child. When a child is having meltdowns…real meltdowns and not tantrums…they don’t like being that way not more than we want to deal with the difficulty. I think for me the turning point of meds or no meds came about when I would take her to the park and she wouldn’t play. She sat on my lap. She didn’t like the other people, she didn’t enjoy the activities and she looked so sadly at all the other happy people. Each child is different, each child reacts to medications differently but when you find the right one and the child’s life falls into place it is such a wonderful experience! For both of you!

  3. Hi Shawna, do you have any posts about diet? Did you ever try or are you on the GFCF diet? I know a lot of people say they never tried because their child would never cooperate with it, but then again, if if helps immensely with behavior and bowels like so many people say, then..? After a year or dragging my feet on it (bc that’s all my son likes to eat- breads and dairy), I am TRYING it for my son with HFA. We are right in the middle of the trial, so can’t say yes or no for results yet. Just wondering what you guys do. Thanks so much.

    1. Here is a link that discusses what we have tried.
      http://nottheformerthings.com/2014/08/04/autism-and-diet-how-our-familys-eating-habits-have-changed/
      The summary is we tried GFCF. We found dairy to be something he is highly sensitive too as well as certain preservatives/additives. I think it is certainly worth considering everything – and start ruling things out as you go. Praying it goes smoothly for you and your child. I know it is not easy, but getting more and more information about what hurts/helps is always worth it!
      Love,
      Shawna

  4. We made the decision to medicate when my son was 8. He is on anxiety medication, and it worked wonders. It took a couple months to realize that it was helping him, but it was like giving him the key to unlock himself from the constant panic he seemed to feel.

    Great blog. Raw and real – much appreciated!

    1. Thank you so much for your kind words! I am grateful you are seeing some of the same success with the meds and anxiety. What a blessing to find something that helps!
      Love,
      Shawna

  5. Hi, may i ask what meds u used? I feel like i am willing to try meds again for his anxiety, just want to know what u started with.

    1. I hesitate to share, only because I think a doctor needs to be involved when you start considering different types of meds. I can tell you that we tried different medications that are typically for depression in adults.
      I hope you understand. If you would like to message me privately, we can talk more specifics.

      1. I tried to pm first, can u help me with doing so? We are trying to get into a paych, and havent been able to yet.

  6. If your son had a problem with his heart and needed medicine, but you withheld it, people would be appalled. They would wonder why you weren’t taking advantage of the best, most, up-to-date medical technology. It’s a shame that this kind of medicine isn’t viewed in the same light. There have been so many great advances. What a shame not to use them if you or your child needs them. We may be crossing this bridge one day and I am going to try my hardest to not feel shamed by anyone for providing my child with the best medicine has to offer. People who say you’re not a good parent if you use these medications, or that it’s the easy way out, have never had a child that suffers from these problems or, if their child does have some problems, their child doesn’t suffer to a debilitating extent like some others. These issues should not be treated any different than physical ailments, which occur in a wide array of severities and may need different types of therapy/drugs/intervention. Thank you for sharing your journey and for creating a space where others can share and learn as well.

    1. Thank you so much for your words. I completely agree and am grateful you took the time to share.
      Love,
      Shawna

  7. We struggled with the decision on medication for our son, but reluctantly agreed to try it after seeing other therapies not helping. I remember the day not too long after he started taking anti-anxiety meds when I saw him doing something with his brother and laughing. I just stopped in my tracks, thinking, “when was the last time I heard him laugh?” I couldn’t really remember, he had been upset and stressed for so long. He was able to have relief from those overwhelming feelings for a bit and I was so glad we were able to do that for him. And I immediately felt guilty that we hadn’t done it sooner, of course. No end to the parent guilt, either way. It is so hard, I would definitely not judge anyone after my own experience.

    1. Your experience sounds so similar to ours. It was such an amazing feeling – when I realized he was coming back to us and enjoying his life again.
      I am grateful you have found what works for your son!
      Love,
      Shawna

    1. I hesitate to share, only because I think a doctor needs to be involved when you start considering different types of meds. I can tell you that we tried different medications that are typically for depression in adults.
      I hope you understand. If you would like to message me privately, we can talk more specifics.

      1. Hi Shawna,

        We have been through the living nightmare of SPD but have not found the correct meds. I’ve tried EVERYthing else and the doc took forever to agree meds were necessary because my daughter exhibits so much anger, which meds don’t help in and of itself. She goes from 0 to 90, emotionally, at the drop of a hat. We tried fluoxetine and it hasn’t done anything. I’ve always wound up taking matters into my own hands with my child and really need to find meds that work for her. Can you help me? My daughter is 17 and a junior in high school and the stress of grades that effect her ability to get into college is pushing right over the edge.

        She was diagnosed in the 6th grade and is now a junior in high school. I read all about SPD when she was in the 1st or 2nd grade, but the only thing on the checklist that matched her was the sensory piece. I torture myself with blame because I didn’t make the right call. By the time we pursued that designation at 12 years of age, she was angry and combative about it. This wasn’t a new thing… Her meltdowns almost killed my marriage and just about drove me out of my mind. Still, I have always been her advocate, even when no one else was and few people understood. She seems to have regressed this year, due to her own choices to take increasingly difficult classes (I’m so proud of her for wanting to challenge herself, but knew it would be overwhelming and tried to guide her appropriately). She stuck to her choices and I am supportive of that… It’s just that I’m so very tired. I know you understand the kind of tired that I mean. I’ve had a very difficult winter, having been dealing with her going from two steps forward, one step back (which took forever to get to in the first place) to one step forward, two steps back. I would be so grateful for any help you can give me.

        Thank you for sharing. I have shared our story with several “mommy groups”, hoping to help others who are in the dark because of this incredibly debilitating issue. I hope to hear from you soon.

        Sincerely,
        Robin Story

  8. thank you SO much for sharing so openly… It is the hardest choice ever, one I occasionally second guess… But then I remember and I am thankful to have meds

  9. Thank you for this blog space. I am trying to deal with a 12 year old with high functioning ASD and we are undergoing the process of diagnosis etc. He has been prescribed with anti-anxiety medication but will not take it. Day by day he is worsening. The words I keep seeing on this page strike at my heart; ‘as though I’ve lost my child’. Yes, that’s exactly it. He is gone. I do not know the angry, tense, unresponsive child who has taken his place all in the space of less than a year!
    The symptoms were there but harder to see for years. Suddenly this year, as school and his father became impossible to deal with any longer, he seemed to transform into someone I can barely talk to; and no, this is not just teenage syndrome and hormones! He clearly has ASD but his anxiety means, the concept of ‘taking drugs’ terrifies him. At least I’d never have to worry he would be tempted by harmful drugs!
    But how to get my son back? How to help him stop feeling terrified every minute about the most minor things? How to get him to cope just with going outdoors? How to even get him to try the alternative therapies that would help calm his body down, when even the suggestion of trying them makes him meltdown further, more deeply?
    Medication is the only way. I know that it is not harmful. I have had to take it myself this same year, to cope with what my son needs from me, and what his father has been doing to us both. I am now able to withstand this and get him through it. I couldn’t before. And there are no side effects that I can even slightly detect.
    As I tried to tell him, it’s not a ‘happy drug’. It does not do that. It just reduces the turmoil and helps your brain to function again, when otherwise stress makes it shut down. That is all it does.
    To all those ready to knock this medication, I will say this:
    I am ordinarily paranoid about medicines, chemicals and non-organic foods. Yet here I am, saved by this particular medication, and no harm has come to me. Some medical advances really have been good for the world. This is one.
    We know we are doing the right thing. Ignore the critics. You know your child. They do not.

    1. Thank you. Your comment and the original post are helping me. My son is 12, and his anxiety is starting to really impact his two younger siblings.

  10. What a wonderful, hard post. I wish all of us ladies could sit and have coffee together – we share such similar stories! I have been staunchly anti-med for a long time. We tried an ADHD drug for 2 days when he was younger, before I knew about SPD and all that fun stuff. That was out of desperation! His experience was really terrible and I have vowed to never do again. But now at almost 12 and with a fresh ASD diagnosis, we have been going through some horrible, horrible meltdowns. They are becoming our family’s new normal.

    So just today I made an appointment with a psychiatrist. Heartbreaking for us, but we are hopeful and prayerful that the right one will bring back the bright, funny, social kid we have been missing lately.

    Thanks for all the encouragement, ladies!

  11. Our oldest isn’t on the spectrum, but struggles with attention and mightily struggles with anxiety. He’s been on meds for attention deficit for at least two years, and we recently have him on anxiety meds. We’ll see if they help…I’m on anxiety meds myself, and I know they work. Our youngest has high-functioning autism, and is on meds for attention. Boy, he really needs them, and the difference is so drastic when he isn’t on them. The Lord gave us meds, and if used responsibly, they can be really helpful. Blessings!

  12. Deciding to medicate my child’s anxiety was one of the hardest things I’ve ever done. It came down to life or death. She had lost so much weight and had vitamin deficiencies as well as she couldn’t sleep – but the worst was her suicidal thoughts and self harm. None of this do I share with many mamas or that we medicate her. I have felt the shame of medicating my ADHD son so can only imagine how this would go down…thankfully She is a vibrant intellegint young woman and you’d never guess what we’ve walked through and continue to. Thanks for your blog. They are a lifeline for many of us.

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