10 signs of High Functioning Autism that I missed

The average age for diagnosing a child with Autism Spectrum Disorder is age 2-3.

My son is 8 years old and he was not diagnosed as Autistic until 6 months ago.

I try not to beat myself up, but at times,  I wonder, “How could we have not known!? Why couldn’t I see?”

The reason is complex.
First, my son has high functioning Autism, and, statistically speaking, most high functioning children (Asperger’s) are not diagnosed until ages 7-8.

But still.  I was a very attentive mother–I was actually LOOKING for the signs because I had this little niggling feeling that something was not right. Plus, he was my first (twins) child–I was in hyper-vigilant mode!

I remember going from website to website, reading lists of symptoms or children with Autism.
I would tick down the lists:
No, he doesn’t flap his hands or spin for hours.
He can make eye contact.
Sure, his speech is a little delayed but he’s speaking more every day.
Awkward social skills? How can I tell?!

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Happy little Benji baby! Smiling, cooing, making eye contact. He never lost skills in his communication and development.

So many of the “symptoms” mirrored every day childlike behavior too:
Dislikes disruptions in routine. Check. Like every kid…
Sensitive about foods or how clothes feel. What 2 year old isn’t?

I tried to dismiss my concerns, telling myself his issues were just due to his premature birth, a quirky personality, and the fact that he’s a boy.

Looking back though, I really didn’t know what to look for. What I didn’t know then was that lists of symptoms on websites like Autism Speaks are very general. Every kid with Autism is different but there are certain signs that I would recognize now if I saw them in my child or perhaps another child.

Here are 10 signs of (High Functioning) Autism that I missed in my son that, looking back, I see were part of his Autistic tendencies:

1. Sensory issues (not just High Energy)

Most boys have a lot of energy. I thought my boys were pretty high energy but figured they were just “being boys.” Looking back, what I realized was not typical was their nearly insatiable need for stimulation (I say “boys” here because it is difficult for me to separate my twins’ behavior sometimes, even though Micah is not on the spectrum. Micah does have ADHD, which overlaps symptomatically with ASD at times).

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Such happy little balls of energy (2 years old)

One of our babysitters once told me that Benji used to run and slam into her over and over again. He would fall down laughing, and then rev up for more. She didn’t mind this game but, now, I understand that Benji was trying to stimulate his sensory system by jarring his body over and over again.

My boys would also wrestle constantly. In fact, if we were in the house, they were wrestling. For a few years (ages 3-pre-K) we left every morning to go to a park, etc. because I couldn’t handle the wrestling.
It was literally the only thing they did.
They didn’t even play with toys!

They would only wrestle.

These are just a few examples of Benji’s sensory-seeking behavior, craving movement and bodily sensations in order for him to “feel” the world or “feel” his body moving and working.

2. Sensory issues (not just Pickiness).

About 80% of children on the Autism spectrum have sensory issues; either their sensory systems are under developed and they crave sensory input (like wrestling, swinging,  spinning, or flopping on the couch over and over again), or their systems are over-developed and sensory input feels like an assault to their systems.

Benji has both. He is a Seeker and an Avoider.

I have written a lot about Benji’s auditory sensitivities at church, but even before that, I remember how he would do things like hold his ears and cry if the plates clattered when I was setting the table for dinner.

He is also super-sensitive to certain food textures. He refuses to eat anything wet and lumpy like cereal, oatmeal, applesauce, yogurt with fruit bits, or the dreaded, GRITS
(In fact, he has described grits as one of his “greatest fears.” That’s real grit-hatred, folks).

Another huge issue for us has been clothing, especially pants and shoes. I cannot even count the number of screaming meltdowns he has had because his shoes or pants did not “feel right.”

For a long time, I thought these things were just typical kid-pickiness. Some kids are just picky eaters and fussy about clothes, right?
I remember hating corduroy pants. My  mom made me wear them to kindergarten one day and I hated the way they felt and the noise they made when I walked. I never wore them again.

The thing is though, that I didn’t throw a 40 minute tantrum because my pants didn’t “feel right.” I just didn’t like them.

Sensory sensitivities can overload the system of an Autistic person to the point where he or she cannot not function or communicate.

Tantrums were part of my daily life. I didn’t know how “not normal” it was.*

Not every child with sensory issues has Autism (Sensory Processing Disorder can be a challenging diagnosis all on its own). However, I include Sensory Issues twice because it is such a huge part of the Autism struggle for many people, and I feel like it is not understood or talked about enough when discussing or diagnosing Autism. For more information on Sensory Issues, I recommend The Out of Sync Child by Carol Kranowitz. 

3. Underdeveloped Fine and Gross Motor Skills

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My twins, sitting up unassisted for the first time at 10 months

Both my twins have struggled with gross and fine motor skills. As they got into school though, Benji’s struggles became more evident. This struggle is tied to his sensory issues, often not knowing where his body ends and where an object begins (such as holding a pencil and pressing it with appropriate pressure to write on paper).

It seemed like a very  long time before my twins learned how to use a fork and spoon effectively to eat. They also constantly spilled their drinks; we used sippy cups until they were 5 years old.

However, now, my 3 year old never uses a sippy cup and rarely spills his drink, and my 15 month old can use a fork with ease. I didn’t realize my twins had fine motor issues  because I didn’t have anything to compare them too.

In their gross motor development, after my twins learned to walk, both boys were still very unsteady on their feet. They had poor body awareness and fell down constantly. I found myself finding excuses not to go on walks because inevitably, someone was going to fall down and get a bloody knee–cue hysterical crying…again. They had scabs on their knees for months.

Another example: At 8.5 years old, Micah and Benji just learned to ride a bike without training wheels.
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We are so proud! We seriously wondered if it would ever happen, especially due to Benji’s struggles with balance, sensory integration, and gross motor struggles (all of which he now works on in therapy).

In my research, I’ve found that many people with ASD struggle with fine and gross motor skills, or executive planning (thinking and then carrying out an action with appropriate skill and force). But before his diagnosis and my research into ASD, I had no idea.

The signs were there but I didn’t know what I was looking for…

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…this is just Part 1 of “10 Signs of High Functioning Autism that I missed.”

Part 2 here where I discuss Communication and Listening challenges, Not Pretending, and Not “checking in” while playing

Part 3 later here where I discuss Transitions, Obsessions, and THE MOST IMPORTANT SIGN I missed

Want to read more of our story? Start here!

*All kids throw tantrums, some more than others. However, for us, the tantrums were frequent, over seemingly small things (sensory issues we didn’t realize), excessive, long lasting (20min-2 hours), and my son could not be reasoned with at an age when one can  usually reason with a child (3-4 years old).

Does your child have SPD or ASD?
What were the signs for you?
Share your story below!

I hope that our story can bring hope, healing, and happiness to you. TheBamBlog is trying to grow! Did this post encourage you or would it inspire someone you know?
If so, please share! Thank you! 🙂

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17 Comments

  1. What an awesome post about Autism awareness!!! Like you I read every book and checklist available when I had my first son. But it wasn’t until he was six that he was diagnosed with ADHD. I didn’t see the signs, and unfortunetely I didn’t really know anything about Autism or ADHD at the time. There wasn’t a lot of information out there 20 years ago.
    I look forward to reading the other parts to this post!

  2. Diane Knichel

    I knew something wasn’t 100% right. My gut told me he had ADHD and I saw the signs and symptoms but it wasn’t interfering with school at this point (Pre-K). I did notice odd behaviors, smelling things like clothes, constantly “slam hugging” people, LOVES to bounce and swing, and then the meltdowns started occurring when he started Kindergarten. He had never liked loud noises but I didn’t think too much about it. I don’t like them either. He didn’t like certain foods, but I assumed it was just his likes/dislikes (he has an older sister and brother so I had been down this road before). When the tantrums began, I thought it was an over reaction, but then, when it started happening in school and they progressively got worse, I knew my gut instinct had been right all along. I started researching, going to the pediatrician who then sent us to a neurologist, who then sent us to a pscyhologist for testing. She told us he had ADHD and when I asked about the behavioral aspect she said she didn’t test for that and we’d have to see someone else. I went back to the Neurologist for a follow up and he said we should just medicate him for ADHD and hopefully the behaviors would lessen. I don’t think so buddy. (Did I mention I have Masters degree in school counseling so I have counseling background?)
    I found a Neuro-psychologist in the area and had him evaluated for ASD. She said he didn’t fit the new DSM-V criteria but she wanted to re-evaluate him in a year. At this point, he had been removed from school twice for self-injury and an inability to calm him down. I had looked at trying to get him into OT but every practice I called said he had to be referred by a doctor or school. When the district evaluated him (one on one) they said he didn’t fit the criteria for services. (They only observed him in a classroom setting for 12 mins). I started looking for a behavioral/developmental pediatrician, which is not easy living in rural upstate NY. I found one, got an appt and spent an hour at our first visit with this incredible doctor. He listened to everything I had to say and when I was done, he looked me straight in the eye and said, “It sounds like he has Sensory Processing Disorder.” And just like that we had a referral to an OT and he’s been seeing them ever since. I had done my own research for months and knew he had SPD, but there is still a question of whether or not he’s on the spectrum. I did not have my son re-evaluated after one year. I’m waiting another year or so. He just turned 7 this past Dec. We have learned SO much and have come SO far with the help of OT and an incredible doctor willing to listen. It took over a year to finally get answers so my suggestion is to not give up. Trust your gut! As a mom, we know our children best. Never give up and keep searching until you find someone who can help and is willing to listen.
    The only other thing I want to mention is how much the Feingold program has helped my son. Before we started OT, I was at my wits end and someone suggested it to me. I had been looking into elimination diets but they all seemed so complicated. Feingold made sense. 3 weeks after starting (strict Stage 1), he was a different child. He went from running and jumping ALL.THE.TIME. to (as his teacher put it) moseying across the room. He is much calmer now and we can tell when he’s had something to eat he shouldn’t have because his triggers are more sensitive.
    This has been a long journey and I know it’s not over. But I am my son’s biggest advocate and I take that job VERY seriously. My hope is that in time, my son and daughter will learn to have patience with him and not push his buttons (I’m trying to work on helping everyone cope) but we have already grown so much as a family. I am grateful for posts like these that remind us, we’re not crazy. We are moms who know our children and understanding the things we see in our children will help them get the services/help they need to become the wonderful, productive people we hope and pray for them to become. Thank you for your post and for allowing my long winded story.

    • Diane, thank you so much for sharing your story! I am so glad you found a doctor who would listen! I am really thankful that my doctor listened to me and always supported me after I finally told me we needed help. God bless you and your son as you continue to move forward!

  3. Well, this is going to turn into a novel, but you can let go off 100% of any Mommy guilt you might be feeling. From personal experience: High functioning kids just DONT get diagnosed at a young age. Even if you KNOW that it is autism and you take them in to get assessed, they will come back with a list of deficits (lack of emotional maturity, sensory issues, speech delay, etc.) with no diagnosis that would cause it.

    That’s what happened when I got my oldest son assessed when he was 3. They also claimed that his delays were likely because of low IQ and implied that I didn’t want to admit that as a possibility. It wasn’t until he as in school full time and he was acting so VERY different from his peers that the school district tested him that we were ever told that it was ASD, at which point we took him back to the regional center to get re-assessed and they took a year to deliberate about whether or not he has autism before they gave us the diagnosis.

    My second son is moderately/severely autistic and people were quick to get him early intervention, and to give him a diagnosis at 3, and were nearly falling over themselves offering me services for him, stuff that I didn’t even know existed.

    My daughter also showed signs of ASD. They were quick to give her early intervention (especially since both of her siblings were on the spectrum) but she’s higher functioning as well, and she was diagnosed with a related disorder called Social Pragmatic Communication Disorder (SPCD) Since they did away with PDD-NOS, this is the new “not autism” diagnosis”) and SPD. But i’m sure you’re aware that SPD is not an officially diagnosed disorder, so that past part was just tacked on to explain the behaviors that fit autism rather than SPCD, but they didn’t want to attribute to autism.

    So i went back to mediation to contest the diagnosis with them, and they treated me like I was some kind of psychopath who WANTED my child to have a disorder. They also wanted to attribute her delays to borderline low IQ, but when i pointed out that she knew how to read at 2 1/2 they dismissed it as “it doesn’t matter, because the IQ test was just to see if she qualified based on intellectual disability, and that she didn’t, so that was that. I wanted them to explain to me why she qualified for SPCD but they were claiming that she failed the “social” portion of the Autism criteria, when they were identical, but they just hemmed and hawed and said that the difference was subtle, but never explained what the subtle difference was. We went to mediation 3 times, and each time they kept telling me “look how happy and friendly she is, she cannot possibly have autism” and were finally threatened that the next time we have mediation that it would be a formal hearing which is held like a court case and gave me a list of places that i could find a lawyer. It cost too much time and money and hurt, and I had 3 kids with special needs to care for and I just couldn’t do it anymore, so I let them win.

    I’m truly expecting the same thing to happen with her, as it did with my oldest son. That she’ll get into school and at least then i will have someone else to confirm my own observations. But I don’t think i’ll even push for a diagnosis at 6, like i did with him, because it did no good. Even with an official diagnosis, the only service my oldest son has ever qualified for is for incontinence products, and even then we didn’t get those until he was 12. So long as the school district recognizes that she needs help, I’ll be content, and likely won’t even ask for another assessment until she hits that “magic age” of 8 where higher functioning kids are usually diagnosed.

    • Sam, wow. That is so tough. You sound like a really persistent mother who knows that her children need help and support. I really hope that when your other children get to school that they will have teachers and counselors who will advocate for them as well. Praying for you and your kids. Thanks for sharing your story. You are strong. Keep up your good fight. Your kids are blessed to have you.

  4. Charlotte

    Thank you so much for your post! I could have written most of it myself. My son is 10, and our main struggle with him is when he gets angry and stays angry for extended periods of time and cannot be reasoned with. He is in a school now for Autistic kids, and it has been great for him. After years of his diagnosis being Mood Disorder and Oppositional Defiant Disorder, it is a relief to know that he has the correct diagnosis.

    • Thank you for reading. I’m sure it is a huge relief. So glad he is thriving at his new school. I hope he continues to grow and develop and your relationship with him gets even stronger.

  5. Well written! (All three parts.) I very much relate. My son was always quirky and sensitive. When he hit 6 it finally clicked that there were sensory issues. Having a meltdown over a haircut or getting nails clipped was something he should have outgrown. We finally got diagnosed this year (age 6.5).

    • Thank you for reading. Yes, when I realized that my son was still melting down about things he should have outgrown, I knew we needed to address some of our challenges.

  6. Anonymous

    It’s so hard! No blame for mom, especially a mom with twins! I’m still angry! I knew right away. My baby boy just screamed all the time from the time he was born. He would only sleep sitting up or swinging. When he started crawling it was difficult to entertain him. He just wanted to wrestle. We started taking him to the pool. At daycare he wasn’t interested in other kids or toys. At home he wasn’t affectionate with me but I could never leave his sight (separation anxiety) to shower, cook, or go to the bathroom. Drs told me nothing is wrong. It wasn’t until I had my daughter 2 years later and experienced normal that I believed my instinticts. I took him to all the experts, Kennedy Krieger, John Hopkins, etc. All I get is he’s a complicated case. No one knows. Why aren’t the Drs familiar with high functioning Autism? Why is there still this disbelief of the parents and no help for twice exceptional kids? My son is seven and I know he has ADHD, SPD, Anxiety, and Aspergers. I’ve given up on Drs and schools trying to accommodate him help him. It’s always been me doing the research and figuring it out on my own.

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