Part 3: 10 Signs of High Functioning Autism that I missed

Welcome to part 3 of my mini-series on the “10 Signs of High Functioning Autism that I missed.”

In Part 1, I discussed sensory issues and motor skills.
In Part 2, I gave examples of communication issues, listening struggles, lack of imagination, and not “checking in” while playing.

So many of these signs of High Functioning Autism (as opposed to what I “thought” Autism looked like [see intro in Part 2] mirror common childhood challenges. But, in children who are on the spectrum, these challenge are greatly intensified and often cause great stress for the child and family.

8. Transitions

I have a vivid memory of when my twins were around 3 years old. We had been playing at an indoor playground, one of our favorite spots, and…it was time to go.
My boys lost their minds.
I can still see myself, walking calmly out of Kids Cove, my chin in the air, with one screaming, thrashing child under each arm.

I may have looked calm but my heart was racing and my face was beet red. The “time to go” tantrum was a common occurrence. But even more than that, whenever we moved to new activity, visited a store or restaurant, etc, my boys acted like it was the first time they had ever been confronted with that situation (NEW STORE???? MUST RUN! MUST TOUCH ALL THE THINGS!!! GO NUTS!!!).

To cope, I started verbally narrating our entire day (First, we are going to eat breakfast; then we will get dressed and you can watch ONE show…), and I gave the same speech before we entered any and every store or restaurant (How do we act, boys? Good. What does it mean to be “good”? Don’t run, don’t wrestle, listen to Mommy….etc). If we had to go to Target and Walgreens in the same 30 minutes, I put them through the same catechism each time.

Most importantly, I gave them warnings before we were going to leave at 15 min, 5 minutes, 1 minute, then TIME TO GO!

It still wasn’t perfect but the transitions got easier over time. However, I still use all these techniques on a regular basis for my 8.5 year old twins (as well as my 3 year old).

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A bit blurry but an example of our visual summer schedule a few years ago: Transition schedule personified.

Before we even knew he was on the spectrum, I knew that Benji really struggled with transitions. He has a hard time understanding time and he struggles with short term memory (long term memory is a steel trap!) so giving him repeated reminders helps the transition to be less of a surprise (he HATES surprises).

I do know that routine is extremely important for my son, as well as other Autistic people, and the expectation of transitions by giving him updates and warnings of impending change helps to reduce his daily anxiety.

9. Obsessions

I have a love/hate relationship with Benji’s obsessions. Well, “hate” is a strong word. I get bored with his favorite topics after  few months but I’m learning to delight in what he delights in.

Fixation on certain topics, interests, or ideas is often a hallmark of people on the spectrum. Often, these “obsessions” can lead the person to become an expert on certain topics and, if guided properly, it can even help in getting a job one day.

Benji’s first honest-to-goodness obsession was Thomas the Train. He had trouble saying “Thomas” so he called the little blue engine “Tallah!” He would wander around the house, hollering repeatedly, “Ohhhh Tallah!!”

It was like a call to prayer…for trains.

He couldn’t get enough Thomas. He knew the names of every engine. He wanted every train set. For several years the only toys we bought him for Christmas and his birthday were trains and tracks. In every package there is an advertisement paper with pictures of every train ever made. He would carry around the paper until it was falling apart, telling us 50 times a day which trains he owned and which trains he wanted.

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Our potty chart. Thomas + Benji = Love

He could practically recite “Misty Island Rescue”–and we didn’t even own that movie. We borrowed it from the library a handful of times.

The intense Thomas obsession faded around age 5 but we still have a huge bin of trains and, if I get them out on special occasions, Benji still eagerly plays with them. He also still loves to watch Thomas on Netflix, much to the chagrin of Micah, who rolls his eyes.

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Benji’s choice of Netflix show this afternoon

I love that Benji still loves Thomas.

When he was little, I didn’t see his love of Thomas as a sign of Autism. I thought Autistic children were obsessed with things like counting toothpicks or lining up cars.

However, Thomas was literally the ONLY toy Benji played with and, for a long time, the only thing he talked about. It was more than just his “favorite toy.” It was a genuine obsession, and a strong fixation on a singular topic or interest is often a sign of Autism.

Are fixations bad? Not necessarily. I look forward to seeing how Benji’s “obsessions” develop and I am going to do my best to guide his chosen interests toward future career choices.

These days, I do get a little tired of hearing about Pokemon but my son’s interests are a gateway into his heart and mind and I am trying to do my best to enter into his world and learn to love (or at least be interested in) what he loves. Plus, did you know? Pokemon is saving my Sundays.

10. Not trusting my instincts

At the beginning of this series I posed the question concerning my son’s late Autism diagnosis, “How could we have not known!? Why couldn’t I see?”

There were so many signs that I missed because I didn’t understand or didn’t  even know about certain Autistic tendencies.

However, I think one of the biggest and most important signs I missed was in myself: I didn’t trust my maternal instinct that something wasn’t quite right.

I had my doubts. I remember feeling perplexed. I researched and read articles about milestones and early childhood development. I perpetually wondered, “Is it…Autism?” But continually dismissed my concerns.

I tried to pass the buck to others:
If my pediatrician says something, then I’ll pursue it.
If the preschool teachers (and later, his elementary school teachers) say something, then I know I’m not just making things up.
After all, they are professionals. They know what to look for.

But, the truth is, I am his mother. My God-given instincts were telling me something but I was too afraid to listen.
I felt foolish.
I felt confused.
I wanted answers but I didn’t know where to start.
I mostly felt like a defunct mother because, truly, it couldn’t be him. It had to be me. If I was only a better mother then I would be able to meet his needs, help him communicate, soothe his tantrums, and discipline him more effectively.

I just need to be better.

But instead of trying to muscle my way towards perfection, I needed to let go of the preconceptions I held about special needs kids and my expectations of raising my son, and acknowledge my own heart-knowledge: Your son needs help. You need support.  Start somewhere. Ask for help.
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When I stop ignoring my gut, we stopped spinning our wheels and started moving forward.

It was the most important sign, the first piece of the puzzle that I put in place.

What was the first sign for you?
What piece of advice would you give to parents who are just starting their journey to help meet their child’s special needs?
Share your story below!

Did you miss Part 1? Click here!
Did you miss Part 2? Click here!

PS. If you think something is wrong, Trust your Gut

Want to read our story from the beginning? Start here!

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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10SignsAutism

 

33 Comments

  1. My son did get an ados eval this week and we are waiting for the results. He is five and i have tried to have him diagnosed for the past year…. When i read your articles i can see my son in every point you make… He is it !!! The reason why i did not try and get him diagnosed before is because even though i have always felt that he is different, i am also very aware that i , as a kid and as an adlut, have always been different and weird to other people. So i came to the conclusion that the apple does not fall far from the tree !!! but i am pretty sure that he is autistic now… Not sure if he is going to get the diagnose coz he was very cooperative during the play session with the therapists. He is extremely different when home…

    • I wish you the best of luck with your son. I hope that he can get the kind of support that will help him grow and thrive. You are a good mom!

    • I hope that the evaluation yields fruitful results for your daughter. It isn’t too late. Helping her develop while you can is always worth it. God’s blessings to you both as you continue to move forward.

  2. Your son is so amazingly similar to my son who was diagnosed at 4. Every single thing you mentioned about Benji was so close to my son that it felt like I had written this blog, talk about deja vu! Right down to the keeping the inserts from Thomas the train, he could go down those check off posters naming every single train at 2 years old. There wasn’t one thing I read that couldn’t be said about my own son. The hatred and fear of grits, the Wild Kratz and Pokemon, selectively talking, sensory seeking avoider, perspectives , bike, motor delays every single thing! I just wanted to let you know about the remarkable resemblence in our two kiddos. He is six now and it’s all about Minecraft and Plants vs Zombies now.

    • Ha! Sounds like our kids would be best friends with all their similar interests. Love it! Thanks for sharing about your little guy. I am amazed at our similar stories.

  3. Meredith

    My son, now 12, was diagnosed at 4 yrs old with autism. You made some real good points.
    I knew he had a speech problem back yrs ago – but when I looked back at old home videos, I never realized the difference. One thing in perticular, Christmas morning we told him “This is a present to Mikey from Santa”. His reply was “To Mikey, From Santa?” and was like that on every present given to him. Another is his obsession in things, he loves Monster Trucks. And also, he researches things in great detail – if he is interested in it. If he isn’t interested, it’s an uphill battle to get him to do any research at all on the subject.
    For school, he has to get an evaluation on his IQ every year. Found out he can only follow directions with a max of 2 or 3 steps involved.
    For the looking in the eyes trick, his one mobile therepist got him staring at the bridge of ones nose to create the illusion that he is maintaining eye contact with others. His evaluator said it works for him. Honestly, most people cannot tell that he really isn’t making eye contact, except for the therepists he sees.
    Another thing is getting his thoughts to words is a task, as well. His therepist told him, when he is trying to get his thoughts out, to stop, think about it, then say it. That works too.

    • It’s crazy how we can look back and see the “signs” but not recognize them in the moment.

      Thanks for the tips about eye contact and getting thoughts to words! I appreciate the advice. 🙂

  4. Meli

    Hi I just read your story and so similar to mine I have a 4 and half year old boy , not diagnosed just suspect, and almost 3 year old twins boy and girl. I can relate to every word that you wrote about not knowing what it was. I didn’t do my research as I was proud with him and confident he is delayed because we speak 4 languages in our home so that must be it.He did so many other stuff that other kids didn’t and made me proud. In the Uk they told us he will get speeach therapy at age of 2 but when he was nearly 3 we moved to Germany and that was the bit that made him agressive and hard to be with. Too many changes ,moved here two homes, two kindergarten, new language…. Now he is in special kindergarten and doing well and we are waiting for a diagnose. He learned a lot in German but struggling with communication.
    I’m very happy that I have the opportunity to read your story and will follow your blog. I can hardly understand the people around because of their dialect is very different to the german that I have learned in school, I’m just middle level at the moment.

    • Meli, thanks for reading and commenting. Wow–it sounds like you have had some challenges. I hope that you will be able to get the support you need in Germany. Hang in there, mama.

  5. Oh man, my son is 4.5 and this describes him so literally. I’m talking, down to the “time to go” tantrums and the Thomas obsession. I’ve thrown the idea around in my head the last couple years that he may have a “touch of autism” but kept rejecting it because I assumed his behaviors were normal for a child his age. We just got a referral last week from his pediatrician to a local organization that handles evaluations and referrals for ASD and SPD related services, so hopefully we’ll be able to get running with that soon. This has been an absolute eye-opening read. Thank you!

    • Amy, thanks so much for reading. I’m glad it gave you some insight. I hope your appointments go well. Hang in there. It is a process Love and peace to you.

  6. Rachel

    Thank you for sharing your story. I could completely relate. I went through the same thing my 4yo who had just been diagnosed with Aspergers, I saw the signs but I ignored them because he was ahead in developmental milestones (language/ motor development) and sooo different to my older child (also Hfa) that I dismissed it thinking it was all in my head or it was just Spd. I was also of the mindset that if kinder/school say something then I’ll pursue it. I got to the point where I couldn’t take the is it/isn’t it so went to the peadiatrician only to have him score highly on the assessment and walk out with a diagnosis. I didn’t think it would make a difference one way or the other as it wouldn’t change the way I parent, my first child is autistic and mr 4 is given the same exceptions and allowances – that is what I know. However it has made a difference, it’s made it easier to be patient and understanding, when he is being defiant, throwing diabolical tantrums or arguing it’s not because he’s being difficult, it’s because things are difficult for him at that time. The worst and most memorable experience was after seeing Santa lady Christmas, my 4yo refused to leave, screamed at me and ran away. I had to chase him through a busy shopping centre and when I eventually got him I went into ‘attack mode’ my only choice was to throw him over my shoulder so I could find my other child and leave with him thrashing wildly. On the way out I found an empty trolley and put him in but he jumped out so quickly I barely had time to catch him before he ran off into the car park. This went on and when I eventually made it the car he bit me arm so hard a big black bruise (about the size of a English muffin) on my arm. It looked like if been hit with a baseball bat. The next day I was questioned by a nurse while getting a blood test, it took that for me to realise that it wasn’t normal and I needed to do something. Sorry for the blog length reply!

    • Rachel, thanks for sharing your story! I think it’s only when we look back that we can see, “wow. that was insanely hard. My life is really hard. I need support and help.” I’m glad you got the diagnosis for your son. God bless you all as you move forward. Thanks for reading and sharing!

  7. Tanya

    This is my son too. He’s 10.5, and we are desperately seeking an evaluation for him. I’ve asked doctors, teachers, everyone for insight since he was 2, and everyone said he was fine, just a boy, slower to develop. It’s only know that he’s supposed to head to middle school that teachers are noting his social and emotional struggles. We are on the waiting list for eval and therapy at four separate places, but the wait list is a year long. Sigh.

    • Tanya, ug. It is so hard to wait. You know what is best for him though, as his mother. I hope you get the answers you so desire. In the meantime, while I was waiting, I did a lot of reading. I really enjoyed Temple Grandin’s books. The first one I read was “Thinking in Pictures.” It is about her life but it gave me something to start with. Best of luck and God’s blessings to you and your son.

  8. Leinnyd

    Hi, like a lot of you, I feel that my daughter has a “touch of autism” (almost 10) with signs of delay in speech, sensory issue and obsession on things. I have never had the desire to test her has I thought it would be labeling her. I thought that she can cope with life just fine, that I can cope just fine too. However, one mom was saying that knowing has changed the perception and acceptance and gave her more understanding of her child. I am still debating, should I be testing her? Would it be good for her self-esteem? Will she be treated differently after the diagnose by her peers? What good would come out of it? I am afraid to go down this path however perhaps knowing would be empowering for our family? Please advise…

    • This is a tough issue and as her mother, you ultimately know what is best for you. I struggled with all the questions that you are asking yourself. For us, getting a diagnosis was ultimately a good thing. In fact, we have had nothing but support and encouragement from people after they know. In contrast, before we knew (got the diagnosis) we did have several situations that were stressful because people were judging us for our son’s behavior. For us, getting the label helped us to get the support and therapies that my son needed. We had daily frustrations at home and school before we decided to get the diagnosis–something needed to change. Getting the diagnosis helped put the “change” into motion.

      It was a very emotional process for me though. I had to evaluate my own concerns about the concept of “labels.” I wrote a bit about it here, if you would like to read about it. I wish you the best of luck and God’s blessings as you seek what is best for your daughter. https://thebamblog.com/2015/10/25/day-24-just-give-us-a-label-already/

    • Karen S.

      Leinnyd, I wasn’t diagnosed with Asperger’s until I was thirty-nine, but I always knew I was “different”. The doctors and my parents believed my difficulties were due to my Congenital Hypothyroidism, I wasn’t diagnosed with that until I was three months old! Many of the symptoms of Hypothyroidism and Autism are very similar! No one knew a thing about High Functioning Autism when I was a child in the 70s & ’80s.

      I would strongly advise you to get a diagnosis! She’s probably already labeling herself and it’s likely not in a positive way! We know we are “different”, we just don’t know exactly why we are. It was a relief to know that I wasn’t being intentionally inept! I truly wish I knew that as a child! I didn’t get the most out of my education because I was frequently in a lot of pain, (Hypersensitivity, and the teachers always said I complained too much!) and despite the old theories, pain is NOT a good learning tool!

      You should search for articles on HF Autism in Girls, we sometimes present differently than boys and it can be a fight to get girls tested!

      My Best Wishes for your daughter!

      • Leinnyd

        Thank you, Karen and Bam for your sound advice and sharing your experiences. Yes, I will now do the necessary steps to get her tested. I never thought about how she is feeling inside and how it’s affecting her self-esteem NOW…being different from everyone would be difficult. I find myself sometimes also not being very understanding on some situation (like popped balloons or the wearing wrong pants) and think of her as difficult too, sadly. I obviously need to educate and reassess myself. I didn’t realize autism could show in a different way for each gender. I am afraid and excited of the path ahead but thankful that I will be able to guide her and (us) through this. Thank you for your encouragment.

        • Leinnyd, so much love, peace, and prayers for you as you step into this new journey. I pray your love and understanding for your daughter will only grow more full. You are a good mom. <3

  9. B Webb

    I’m coming at this this from a slightly different space I have often thought my son has Aspergers, and we have had him assessed and the specialists say he is not. He has a connective tissue disorder (Ehlers Danlos Syndrome) and has been diagnosed as SPD but I still feel he may be on the spectrum. He is extremely bright and I believe his learned behaviours mask a lot of these issues and had I got him tested earlier we may have had a diagnosis. He is a seeker for touch and an avoider for noise, Thomas was a major obsession for a number of years, it’s all about Lego now and he’s desperate to play mine craft which I’m still holding out on. He has such intense concentration and even at 2 could play the same game for 2 hours without getting bored if it interested him. He spoke with a sing song lilt as a toddler and still does to some degree at 5.5, he loves patterns and could count to ten and say the alphabet by 1.5, he’s also getting basic multiplication concepts at pre-primary level as he find great enjoyment in patterns. I believe the checking in was also below what you’d expect after reading your explaination.

    He will make eye contact with me but if I force the issue you can see it is really hard for him, he also doesn’t like to look directly at a camera. We have gotten better in our own daily life with the massive tantrums but it was really obvious again on holidays when he was out of his comfort zone, birthday parties can be tough too. He also doesn’t let perceived slights go and will harp on about them for hours. He can be very social and engaging with other childen if he is interested in what they’re doing but will otherwise separates himself to play alone. He also struggles in crowds and with unexpected changes.

    He also has a very clear vision on what he believes is right or wrong and there are no greys which causes quite a few problems.

    Sometimes I think it would be worth getting him reassessed but I think the SPD diagnosis and the OT support we currently have are getting him what he needs anyway and until I see it negatively impacting I don’t know that I’ll try again. I really appreciate reading articles like yours as it forces me to take stock and see if I’m happy with where we are or if I should be doing something else.

    • It sounds like you are very intuitive to your son and his unique personality and needs! I hope that the therapy continues to serve him well. Thanks for reading!! You sound like a great mom!

  10. Tracy

    My son was born at 33 weeks and is now 2.5 years old. We started in early intervention around 18 months for speech delays and low muscle tone. Our pediatrician mention the word autism at our 18 month checkup and I went home and cried for days. Unfortunately due to my own health he will be our only child and I had a certain plan I’m my head about how our lives would be, autism was never in that plan! I’m an RN and spent 12 years working as a pediatric and peds ICU nurse so naturally my mind goes to worst case scenario all the time. We currently receive weekly DT, OT and speech therapy and PT sees him every 3 months. My husband and I work full time so life is very hectic. I’m still waiting to hear his first word but am so excited with his progress. At this time we have no official diagnosis and are considering seeking out a specialist to help us with that. He definitely has some sensory processing disorder but we don’t know if he also has autism as well. I wish we would have pursued therapies sooner but we all thought he had delays because he was almost 2 months premature. I’m so grateful for all the other parents out there that share their stories. It really helps me feel less alone in all of this.

  11. Michael

    Hi I have just turned 40 and only diagnosed with ASD 18 months ago.
    I have been struggling with why my parents had not seen in me the signs.
    As I have looked further into it, the knowledge of the spectrum was only more recently available.
    I still remember my wife had mentioned that my mother often said she just never understood my son (who was always referred to as my mini me) he has since been diagnosed with ASD also.
    We have already seen the benefits in my son who is nearly 18. I often wonder what my life would’ve been like if I had the opportunity to start learning at an earlier age.
    Please if you suspect your child has any symptoms get them tested. All the research shows the earlier the child can learn why they are different and be able to adjust to be able to interact with the world the better off they will be, and the easier it is for them to make the necessary changes. Things that neuro-typical people just do inately the ASD person needs to process manually.

  12. Julie

    Hi! I am very interested in autism for a couple reasons. First, I’m studying to be a speech-language pathologist and autism is an area I hope to focus on! Secondly, I have loving concern for my twin nephews, who are now almost 4.5 and who I believe have high-functioning autism. I seek new articles and blogs to read all the time, but WOW; yours (particularly this 3-part post) is one that I will keep returning to! Thank you for sharing your story with us. I cannot believe how absolutely perfectly this 3-part series describes my nephews. It’s a sensitive subject because the parents have refused to believe there is any cause for concern. A few of us in the family had suspicions but said nothing until close to their 4th birthday when my mother-in-law (a preschool teacher) gently brought it up as something to get checked out, at which the boys’ mother was deeply offended and angry. So at this point, we admit we may be wrong in our conclusions but pray for an outcome that provides the boys with help for a successful and happy life. We know early intervention is key, but sadly we can’t really say much more; now, it’s up to the parents. Like I said, it’s a touchy matter. In addition to exhibiting nearly every characteristic you discussed in your post, the boys still refuse to potty train, one is a toe-walker, they are repeaters/memorizers, and one is hyperlexic (an awesome talent- but definitely atypical; he was reading before age 4!). Anyways, thank you again for sharing, and it feels good just to share our story with someone who understands since the topic is now taboo at family gatherings. Keep up the great writing! 🙂

    • Julie, thank you so much for reading and for sharing your family story. It is such a sensitive and terrifying prospect for parents to consider. Ultimately I had to realize that a diagnosis just opened the door to therapy and support that we needed to help my son thrive. However, coming to that realization and place of acceptance was difficult for me. If you are interested in reading more about our Autism journey, please check out the posts in this series, “Benji’s Story” http://www.thebamblog.com/day-1-introduction-to-benjis-story/

  13. Weareloud

    Oh my gosh. I have a 6yo boy with HF ASD (diagnosed at 5) and a 4yo girl with ADHD (just diagnosed). Oh my gosh the wrestling and noise!! And the part about going to the store as running and touching everything is my life. We do pep talks in the car too. It helps for the first few minutes. You are so right about trusting your gut. Every doctor told me he was “fine” after observing him for 5 minutes. He didn’t have any behavior problems, just was “atypical”. And the crazy thing about being a seeker and avoider. I couldn’t agree more. How can you get overloaded by loud noises but be the loudest thing in the room? I learned so much that first year after diagnosis. I try to be structured as it benefits both of them but it’s hard all the time. I feel like at the end of the day I am overstimulated by them. Also all my kiddos “red flags” I see I hindsight now too.

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