Autism Lives Here

Autism Lives Here

When we left the doctor’s office three weeks ago, he sent home 9 tests for us (parents and grandparents) to fill out. I returned them 5 working days later. Our follow-up appointment was not scheduled until February, but to our surprise, we were called late one afternoon last week and told the good doctor had a cancellation; could we come in the next morning?


We shuffled schedules, prepped food for a long day in town, and were ready to go the next morning.

Before the appointment even began, the doctor got to witness a typical Jed meltdown. I mentioned that at our first appointment, the receptionist took the kids down to play in the playroom so the doctor and I could talk undisturbed. They do have a very nice little playroom for kids, but I was confused. One of the other therapists has an office full of “kid stuff” right across the hall from the playroom; obviously, she primarily counsels children.

Jed and Zac were having a grand time playing in the therapists office when I gathered them at the end of the first visit. At the time, I didn’t realize this was a therapists office…I thought it was the playroom.

Before we went to the second visit, I explained to the kids that Daddy and I would be talking with the doctor while they played in the playroom. Jed, like me, thought the playroom was the big therapists office.

When we got there, we were led to the actual playroom. The therapist was in session on this day, and they couldn’t play in her office. Jed had a full blown meltdown over being told he had to play in the smaller playroom. His expectations didn’t match reality, and he simply could not adjust easily to the change.

This is normal for Jed.

We finally got him unhappily calmed in the smaller playroom and went to chat with the doctor.

He kindly and thoroughly went through every test we completed on Jed, explaining what the test was looking for, how it was scaled and rated, and what the results meant. Then he summarized all of the test results and his personal observations into a final diagnosis.

The verdict?

Jed has been diagnosed as Autism Spectrum Disorder, Level 2 “requiring substantial support”, AND Attention-Deficit/Hyperactivity Disorder, Combined Presentation, Severe.

Oh, and a nice little Oppositional Defiant Disorder thrown in for good measure. Fortunately, that one is deferred. The doctor believes that treating the other two conditions will correct the ODD without having to focus attention on it directly. Obviously, we will reevaluate over time to ensure that prediction proves accurate.

The doctor did not  diagnose Jed with SPD. He basically said that he saw it in Jed, but believes it is a symptom of the autism. He officially recommends Jed be evaluated by an OT for assistance with Sensory Issues.

Since the OT has already evaluated Jed and diagnosed SPD, my son now has as many labels as a Monsanto vegetable should  have.

  • Autism
  • SPD (Sensory Processing Disorder)
  • ADHD (Attention-Deficit/Hyperactivity Disorder)
  • ODD (Oppositional Defiant Disorder)
  • IgE to Egg and Peanut
  • MSPI (Milk/Soy Protein Intolerance)
  • Fructose Malabsorption
  • Salicylate Sensitivity
  • and a Partidge in a Pear Tree!

Yes, I’m making pathetic jokes. I’m desperately clinging to my sense of humor to avoid a total crying jag.

As a nifty bonus, the good doctor agreed with my self-diagnosis of Autism. While he was NOT evaluating or testing me at this time, the similarities between Jed and myself are so strong that he concurred with my self-assessment. He said the decision to proceed with testing and evaluation for myself was purely a personal decision, but that it was probably safe to say that I am on the spectrum somewhere. Where exactly on the spectrum I fall is unknown without testing.

Personally? I don’t feel compelled to pursue testing for myself at this time. It’s strictly a logical decision. I would LOVE to know exactly where I fall on the spectrum. (Autism, after all. I like to know the truth, the facts, and the rules. Ambiguity is intensely uncomfortable for me.) However, this testing and treatment for Jed is quite expensive. Any spare money we can come up with needs to go to helping my son, not towards satisfying my own curiosity.

Obviously I have developed coping mechanisms throughout the years that have enabled me to have a long term, successful career in a very people oriented job; a happy, stable, and satisfying marriage; and to be an excellent mother to my children. While I’ll be the first to say that I could probably benefit from some treatment/therapy, well, the truth is, I can do without.

My son cannot.

At the end of the session, the doctor said he would like to see us back to go over treatment options for Jed. Obviously, we are pursuing Occupational Therapy for him, but the doctor would like to speak with us about other assists: therapy and medication.

I have concerns about that.

While now it is quite clear I am autistic, in my teens I was diagnosed as Bipolar and depressed, and placed on myriad medications that completely whacked my body out. (I am NOT Bipolar, so lithium at any dose was toxic for my body. Antidepressants at the lowest possible dose completely numbed me out so I felt…nothing. No sad. No mad. No happy. No joy. I was numb. Not acceptable.)

I won’t even begin  to dissect the horrible counseling and therapy I’ve had over the years. <shivers>

Needless to say, while I have a very good feeling about THIS doctor, my overall experience with anyone who has a “psych” at the beginning of their title (psychiatrist, psychologist) has been overwhelmingly negative. Sending my son into that world at his tender age makes my blood run cold.

Not to mention my dislike of unnecessary medication for children. I stand by my earlier statements that sometimes medication is necessary for children. But until I’m convinced that it is absolutely necessary for Jed, I find myself reluctant to even consider “drugging” him.

Sigh. There’s a lot to consider, and much of it, I fear, is going to completely destroy my comfort zone. While I’m on record saying I dislike medication for children, being uncomfortable with psychotherapy for children, and will probably also dislike many of the other treatments presented to us, I truly don’t need any reminders that the ONLY thing that matters here is what is best for Jed.

I believe it’s pretty clear, by this point, that there are no lengths I will not go for my children. If that means weekly session at a psychotherapist for Jed and daily pill popping, I’ll go there.

Even if the thought of it makes my skin crawl.

I’ll do what is best for Jed, but I’ll make damn sure it IS the right thing before I sign on for any treatment plan.

Oh, and for a bit of levity, here’s a thought: maybe I need to go into psychotherapy as a career! I now have a really high track record regarding diagnosing my boys. I suspected ADHD years ago but was told not to worry. I’ve commented on ODD as a possibility. I spotted SPD. I figured out most of the food issues. Yeah, I missed autism, but overall?

I’m pretty good at this for a layman.

Damn. I hate it when I’m right. Sometimes. 

Now here’s a scary thought: how much MORE pronounced would Jed’s symptoms be if we hadn’t already discovered his food issues? We’ve already connected ADHD-type behavior to fructose, and ODD behaviors with salicylates. (The Meanies, anyone?) He would have been SO out of control that he probably would have gotten all these diagnoses earlier, but that means we would have almost certainly had to drug him at far higher doses than we will have to do now. OMG.

By the way, in case anyone is wondering how I’m handling all of this…well, I’ve withdrawn almost completely. I’m sort of obsessing on autism reading and research right now. Having this diagnosis is a simultaneous relief and sucker-gut-punch. Finally there is an explanation for MY ENTIRE LIFE! Finally there is an explanation for some of the struggles Jed has! Relief!

But now we’re Labeled. (I have one helluva story to share about THAT already!) Now we have MORE to deal with. Now we’re in a whole new Special Needs World that I need to navigate, while also continuing to navigate everything else we deal with.

There’s a part of me that is wondering how much more I can take. There’s another part of me that is part stubborn witch (ahem), part Uber Mama Bear, and part rebellious teenager that’s saying “Bring it, baby! I’ll take you all on with both hands tied behind my back!”. And there’s another part of me that is suddenly reliving my youth through repressed memories and feeling incredibly vulnerable and off kilter thanks to re-feeling those anxious fears and confusion I used to live with on a near constant basis.

I’m having to do a lot of mental shuffling and balancing to make sure my personal demons don’t interfere with ensuring Jed gets what he needs. That will get easier with time; I’ve proven I can self-heal, and that I can go to battle for my kids. It’ll be okay. We just need a little time.

Obviously, we have to confer with our doctor…but I’d love to hear any useful input from those who have walked this road before. ADHD meds? Yay or nay? What do we need to know? 

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19 Responses to Autism Lives Here

  1. Ruth P. says:

    Hi Carrie! Let me start by saying I’m glad you got the answers that are going to help you help Jed. And then I’ll tell you that it’s all going to be just fine (eventually). ADHD and Autism are not death sentences – I’ll take them any day of the week because they are quite manageable. I was diagnosed ADHD in 6th grade, and am most likely undiagnosed SPD and OCD. My son is diagnosed Tourettes and ADHD, and most likely undiagnosed SPD. Remind yourself that “I have (insert label), but (insert label) doesn’t have me!” You already know that the coping skills will be learned, and DO NOT be apprehensive or fearful of meds – they can be a valuable tool to get Jed through the rough times WHILE he is learning the coping skills. There are a lot more meds available now then when I was diagnosed, both stimulants and non-stimulants. You can also do genetic testing through Harmonyx for a “first cut” of ADHD meds that are more likely to be compatible with Jed, if you decide to go that route. We exhausted every option we could find (essential oils, behavior therapy, homeopathic remedies, eliminating suspected food allergies, assessing for nutritional deficiencies) with absolutely no effect before we decided to try meds on Brady as our last resort. The very first dose made it apparent that we made the right choice, and we aren’t looking back.

    • Carrie says:

      Ruth, I love you! Just to be clear, I never thought they were death sentences…just BIG SHOCKS! LOL

      I’m totally sending you a private message or email to talk meds, if you don’t mind. I like the idea of trying to find what drugs might be most compatible before heading off that road. I know I’m going to try and do some good gut restoration in Jed, but honestly, we keep him off the foods that seem to trigger him, he can’t stand the smell of Essential Oils (seriously, even the heavenly smelling ones trigger his SPD!), so I don’t know much more we can do without meds. Definitely work on making sure his gut is as healthy as can be, probiotically, and maybe see how OT does for helping him control, but the more I think about it, the more I suspect meds are in his future. So I would LOVE to hear a firsthand account from an adult about how they work and make you feel.

      Thanks for sharing this, Ruth! You rock! 🙂

  2. kmpelters says:

    All I can say is WOW! My first thought as I was reading this, what would he be like if you weren’t all over the food stuff!! I think this is going to be a good thing in the long run! You are going to be able to figure out the best treatment plan for Jed and for yourself! Take time to feel first, sad, happy, angry, whatever it might be. You need to allow yourself to do that! Then go back and fight like heck! You’ve got ALL of us backing you up!!!

  3. Leslie Guy says:

    I knew at the age of 2 that Tyler has ADHD, but I knew very little about Autism or anything on the spectrum. It wasn’t until he was 11 that he was “diagnosed” with Asperger’s Syndrome when we were on a visit with his ADHD doctor. They’re weren’t any tests or formal diagnosis, but a casual mention after his doctor notice some behaviors that fit the symptoms. I didn’t want to believe it, but honestly, it was a relief to finally have some answers to his odd behaviors. But up until that point, he had been taking medication for his ADHD since he was 4.

    Now I’m like you, I HATE medication and always use it as a last resort. But I convinced myself that it was for his own good especially during the school year to allow him to be able to focus during class. He would often be easily distracted by the smallest of things and school has always been a struggle for him. So much to my dismay, I knew it was the best course of action and the lesser of two evils.

    Now fast forward to where we are today, and I would say at best, that he has out grown the ADHD part and now we deal with the anxiety and struggles of a teenager who has Aspergers. He isn’t not social in the least, could care less about participating in group activities and would rather spend his time talking with people he’s never met playing on his playstation. It’s a daily struggle to accept him for who he is, when I can’t at all relate. He still struggles in school with being distracted by his phone, IPAD and host of other things (I hate the IPAD in school. it was the worst thing that they could’ve possibly done for kids, but that’s another subject entirely).

    Tyler from the age of 4, had physical therapy for his lack of fine motor skills, speech therapy due to his constant ear infection gone undiagnosed by a terrible pediatrician, and occupational therapy to help with tactile functions.

    I know it may seem super overwhelming and I think you’re handling it remarkably well. As a mom, you can only handle what God gives you to handle and you’ll go any lengths to help your children.

    An autism diagnosis is not the end of the world, but literally an answer to so many questions. Be sure to be an advocate for him when it comes to school. There are many schools that offer programs to help children on the Spectrum, but you really have to push for it.

    Most of all, take it one day at a time. Love on him as much as you can and be the cheerleader he needs. I’m proud of you for handling it all with such grace and dignity and for sharing it with the world.

    • Carrie says:

      Hey, sweet friend! I know we chatted already, but I wanted to say that I loved this: “An autism diagnosis is not the end of the world, but literally an answer to so many questions.” YES! It answers so many questions about everything in our world. Great comment!

      You know I’m always loving on my kids. 😉 And love you, too!

  4. rpcvmama27 says:

    I haven’t read the previous comments, but I am part of an online group for people doing the GAPS diet. Multiple families in the group have children with autism, and several “alumni” members of the group have sworn that GAPS has “cured” all symptoms of autism. It’s controversial yes, but in our world (FPIES) we all know exactly how much medical science thinks of food being related to disease… so it might be worth at least reading up on it. BTW, we’ve now lost two triggers being on GAPS for 8 months. She’s no longer allergic to oranges or turkey.

    • Carrie says:

      Yay for oranges and turkey!! That’s fabulous news!

      GAPS is tricky for us, since we would lose quinoa and it’s one of the few foods Zac has. That’s the whole reason we haven’t pursued it yet, to be honest. But for Jed…I might be able to make it work.

      A friend of mine has suggested fermented foods like Kefir and Sauerkraut to help his gut, and our doctor himself said he worked in a research hospital at one point where they did a brief study of gut health in relation to autism and saw HUGE results; unfortunately the study was shelved. So I am well aware of the gut link to…everything! LOL

      I definitely plan to approach gut health as part of the autism plan, in some form or another. I think I’m actually IN one or more of the GAPS groups online, though I stopped reading and following one I realized we would lose quinoa. Maybe I’ll pop back in and peek around again. Thanks!

  5. Amy in SC says:

    I’m floored. It’s great that this provides answers, but I know it isn’t what you were looking for. I am so glad you already started home schooling. I know a family with an autistic boy that home schooled him all the way. He is now a grown man with a job. He has a therapy dog to help him, and he has a good life. It is a lot of work, but you are already on the track with food, school, and plenty of determination. It also looks like you have found another good doctor.

    • Carrie says:

      Thanks, Amy! Your story about the young man is very inspirational. I had to laugh out loud, though; Jed would be turning cartwheels at the idea of a therapy dog! Hugs!

  6. Cathy says:

    I just finished reading both of your posts and my heart aches for you. I’m sorry that you have been going through all of this over the last couple of weeks! My son doesn’t have autism or ADHD but I am one dissertation defense away from being a psychologist. I will say this – the good thing about labels is that they serve as a starting point. Now you know what you are dealing with. You already know the downside of labels, so don’t label your child, label his behaviors (Jed has autism, not Jed is autistic). It sounds like you are dealing with a wonderful psychiatrist. Use him! Let him be your guide and introduce you to other treatments and professionals. Psychotherapy for children is not the same as it is for adults. It is very behavior-oriented and might even seem a lot like what he’s experienced with OT. I know you have hesitations about psychotherapy, but please try to be open-minded. Find a therapist that you trust. Shop around until you find one. Of course you have to be comfortable and I know that FPIES and all of your other experiences have refined your motherly instincts so you will make the right decisions for your son. I’m not a child therapist so I don’t know the most recent literature, but generally, meds are the best way to go for ADHD (and it’s pretty hard to get a psychologist to recommend meds). But Jed is young and you may be able to try some other methods first. Just be open with whoever you are working with, lay out your concerns, and work with them to set realistic expectations and goals. Then you will know if you are meeting them or not and if they treatment you choose is working. I will be thinking of you and your family as you embark on this new journey and wish you the best of luck!

    • Carrie says:

      Hi Cathy! Thank you for this. I appreciate your outlook about labels, and I think you’re right. I’ll mentally think of it that way, but I know already that in my writing, I’ll wind up using “Jed has autism” and “Jed is autistic” interchangeably. LOL We’ll know the difference. 😉

      Our guy really is a good shrink. I never thought I’d say that, based on past experiences, but I have a good feeling every time I deal with him.

      I like the way you describe psychotherapy for kids; that sounds a lot like OT, as you said. The meds issue…well, I still have a lot to learn, but from the feedback I’m getting so far, they’re sounding a little less horrible than the impression I had in my mind. We shall see what the good doctor says and go from there. I’m holding myself steadily on the fence so I can easily hop to one side or the other, based on what is best for Jed, rather than letting myself settle firmly on the “no way in hell” side of the drugs question.

      Thanks for pointing out setting realistic expectations and goals. It helps to clear the air of any big issue by seeking the end desired so a plan can be made to work towards that end. Sometimes, in the beginning, when things are overwhelming, it’s easy to lose sight of that. So thanks for the reminder. HUGS!

  7. Colleen says:

    Alright, I’m writing this on my phone, sitting in an airport, so please excuse typos. And I might come back to comment more later when I’m home and my head is thinking clearer.

    First, big hugs to you. You are not alone.

    I have been reading your blog since the beginning, but
    I am not much of a commenter. Interestingly enough, our lives seem rather parallel. I’m a mom of 2 boys (6 & 4). The 6 y/o has SPD and most likely ASD, OCD, ADHD, etc. The 4 y/o has FPIES (mostly outgrown, still some triggers). I am pretty certain I have mast cell activation syndrome. My kids attend a private school, but they will be homeschooled for the next school year. Oh, and I too am very against medication.

    I knew my oldest was on the spectrum by the time he was 9 months. I desperately searched for help and answers, but kept running into brick walls. He always fell right under the bar to qualify for early intervention. He was right on the cusp, and high functioning enough, that he was overlooked by everyone that evaluated him. The furthest we got was SPD. It was exhausting, but I remained determined to get him a diagnosis. And then my FPIES baby was born, and my world crumbled to the ground. My relentless search to get my older son help, was placed on the back burner. It would have to wait, while I figured out answers for my exclusively breastfed baby that was pooping blood and cried in pain for almost 24 hours a day. What a journey!

    But over the years, I somehow arrived to a new place. My quirky 6 y/o is amazing the way he is. I cannot imagine him any other way. Yes, his meltdowns can be exhausting. His obsessive compulsiveness drives me nuts at times. But he is sweet, loving, funny (in his own quirky way), and extremely bright. At this time, the diagnosis no longer matters to me. I want my son to live in a world where a label is irrelevant, and rather people are accepted for who they are. I have come to LOVE that he is not “typical”. He is remarkable and unique, and perfect. He is high functioning, which is why I think plays a part in why I feel this way. I worry (as all parents do) that he will be teased or isolated for his behaviors. But as his mom, I intend on helping him achieve confidence, and happiness. I think homeschooling helps with that. It’s a way of telling our kids “it’s OK to be you.” And it is OK.

    You’ll be OK, I will be OK, and your Jed and my Wyatt will be OK too. From your writings, you remind me so much of myself. You’re a good mom and your kids are lucky to have you.

    Feel free to reach out anytime. Next time you’re in Chicago we would love to meet up with you too 🙂

    • Carrie says:

      Oh, wow, Colleen! Thank you so much for sharing this. It does sound like we live parallel lives! I love every part of what you’ve written here, so I’m only going to agree with the last part: we will all be absolutely fabulous in the end. It sounds like your kids have a great mom, too. (Thanks for that compliment, btw.)

      I’d love to meet up sometime when I’m in Chicago! I usually aim for “in and out” as fast as possible to get home to my family, but occasionally that doesn’t work out. I’ll let you know the next time that happens. 🙂 BIG HUGS!

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  9. Well all I can say is… I love you and no matter what you will make it through all of this. You are a survivor and it’s no mistake the Lord put His tiny cub Jed in your mama bear hands. What you went through growing up was a training ground to being the best Mom you can be while you teach Jed how to navigate successfully in an imperfect world. You got this lady.

  10. Rebecca says:

    Hugs to you, Carrie. I am glad you have some answers, new stuff to look into, and a supportive doctor. I am sorry that nothing is ever easy, is it? As thoughtful as you have been about everything your kids eat, I feel confident that your decision on the medication will be 100% right for your boy.

    My 2 cents on the medication as a teacher is to ask the question, how is this disorder affecting the child’s education, peer relationships, and self-esteem. If Jed were in public school, I imagine that his autistic behaviors would impact those last two. He’s too stink’n smart for it to impact his learning! But he’s not going to public school and his sense of self seems to be A-Ok. I know you gave shared some stories of him having trouble with other kids, but how much of that is just age appropriate? He’s 5? Kids are still working on the basics of playing together at that age. Up until age 7, most kids define a “friend” as “the kid who plays with me today” K-2 are full of “she won’t be my friend anymore” (i.e. she doesn’t want to play with me today). Does he need internal (medicinal) help regulating behavior, or will external (things you can control like his access to calming strategies, his schedule, etc.) be enough?

    Food for thought.

    • Carrie says:

      Thanks for the food for thought. Those are good questions, and while we hadn’t posed them as clearly as you did, those were basically the things we were considering when we made our decision. I appreciate you you specified our concerns so concisely, though. It’s perfect! (You’re still the smartest girl I know.)

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