Isaiah’s Autism Diagnosis Story

Autism By Google Definition: A serious developmental disorder that impairs the ability to communicate and interact, impacting the nervous system and treated with intensive therapy.

It’s been a long journey to get Isaiah his Autism diagnosis and honestly we’re just at the beginning! I’m sharing his story in hopes that it‘ll bring awareness to the special needs community as well as advocate for early intervention. Zay was diagnosed with Autism Spectrum Disorder- Level 2, here’s how our adventure began.

As a baby, Isaiah‘s development was right on time. He rolled over, crawled and walked when he was supposed to. Isaiah also loved to babble and made lots of sounds and squeals often. He’s was (and still is!) a very happy, smiley child and was also very active and curious as an infant.

At around 10 months old I did start to notice Isaiah was not hitting certain milestone particularly the ones in the social/ emotional category. At that time he wouldn’t respond to his name and wasn’t pointing or clapping. As a first time mom I didn‘t think much of it since I felt like he was excelling in other areas and figured that he would eventually catch up and be fine.

At 12 months Isaiah had no words and tantrums started to increase. His lack of attention to anything around him was obvious. He had no reactions to loud noises, if someone greeted him or if anything new presented itself to him, it would be met with a blank face. He didn’t bring things to show me or invited me to play with him with toys or activities which were both age appropriate behaviors he should have been doing. Again, I truly didn’t think much of it and would often describe Isaiah as “quirky” or “in his own world”. He was very much an independent toddler who didn’t really need me for much and enjoyed playing on his own. At this time his obsession for lining toys, shoes and anything else he could get his hands on began. He liked piling lots of toys up too and carrying a million things all at once. He had attachments to non toy items like sticks and rocks and pencils and would become very upset if anyone tried to take them away. He was very vocal and often screamed to be heard and was hard to feed from being selective on what he wanted.

By the time his 18 month pediatrician appointment rolled around Isaiah still had no words and was becoming difficult to manage. I dreaded taking him to public places like the library or grocery store because I truly had no idea how he would act- his emotions flip flopped so fast! His doctor suggested speech therapy and though I was intimidated, I was more excited that he could possibly learn new words to help ease his frustrations. During his speech evaluation they did a simple screening to see if he had symptoms of Autism and it came back inconclusive. He was just too little to say for sure if it was Autism or typical toddler behavior. Thankfully he did qualify for speech services and started receiving sessions twice a week and made huge progress!

At the beginning of Isaiah’s second year of life, spinning, vocaliztions (stemming) and hand flapping were evident. He also had very particular and rigid routines he had to follow and if he didn’t he would be upset. His diet was very restricted and he started to not sleep well at all. By this point I’ve been googling some things he has been doing and Autism or Sensory Processing Disorder was popping up as the results. I began to wonder if he really did have this condition and felt torn on if I should pursue help or wait it out. In some ways it seemed crystal clear that Isaiah was on the spectrum but in other ways I was so confused. “But he seems so smart!” Me being in my own ignorance felt that being Autistic meant non verbal and responsive both of which Isaiah wasn’t. Isaiah at this time did have words he was saying and was picking up more and more daily. He knew his alphabet and numbers and was learning shapes and colors FAST. In group activities at church or at his previous preschool he was always placed with other kids his age and though he wasn’t super engaged with them he did seem to enjoy their company. He laughed and smiled a lot... how can it be true?

After some prompting by friends and family I made a call to our states early intervention team. I expressed my concerns as well as my uncertainty and they were more than understanding and willing to help in any way I felt fit. We scheduled a speech eval, an overall development assessment and a MCHAT screener to happen within days of me calling to determine where Isaiah stands. His developmental specialist who was assigned to us answered any questions and gave me such peace of mind about the process. If you’re not familiar a MCHAT is a free online screener that helps you see if you’re child may be on the Autism spectrum. It’s about ten questions long and at the end it gives you a score on if your child may be at Mild, Medium or High Risk for Autism. This tool does not diagnose but it does point you in the right direction on if you do need to pursue a diagnosis. I cannot remember Isaiah’s exact score but it did indicate high risk. He was presumed to be on the spectrum at that point with Early Interventions and they welcomed him into their Autism clinic where he received speech therapy and access to information, tools and resources while we were waiting on our next steps.

The process to get diagnosed is not for the faint of heart. We had to see his pediatrician and get a referral to a neuropsychologist. Waiting to see that doctor took a month and a ton of paperwork. The eval itself was a two day process done in one hour sessions each and then at the end of it all it took an additional two weeks to get the results. I am grateful they were so thorough in their findings with Isaiah. They placed him development wise on a 24 month old level (for reference he’ll be 36 months in November) as well as giving him a autism diagnosis. The doctor told me he was advanced in pre academics but a lot of the testing couldn’t be done due to the restrictive repetitive behaviors he had. At this point I had no doubt in my mind that he wasn’t autistic and everything the doctor mentioned I couldn’t have agreed more. As far as levels go and what that means is that it indicates how much support your child will need in different settings; as a level two Isaiah can benefit from having an aid in some situations but in others he could do fine without one. Levels can change but this is where it was when they placed him to start. They recommended speech therapy, occupational therapy and ABA therapy feeling confident that with those in place he can be functioning better behaviorally and can start kindergarten on time with no delay. Truly it was such a relief to KNOW. I hope this story encourages you to be brave and pursue answers for your child if you feel like they may be on the spectrum as well. My advice is to not ignore missed milestones and to keep track of development.

Early intervention is critical to success to kids with autism and the earlier you get diagnosed you can begin getting them involved in more services and opportunities to grow. Below I’ll leave a link to the MCHAT we used as well as giving a special big thanks and a virtual hug to Nevada Early Intervention for being literal angels during this process. Isaiah is still receiving free services until age three and they are always checking up on him in between to see how he is doing. Reach out to your states early intervention program to start your child in some sessions that are usually free of cost to you, they support and most importantly educate you on what needs to be done next.

https://www.autismspeaks.org/screen-your-child