Special thanks to Alicia King for sharing her story to help in writing this article!
Our son Daniel was diagnosed with Autism Spectrum Disorder at three years old. With that formal autism diagnosis came a mixture of emotions — sadness, anger and anxiety. But also, some relief.
There was sadness, knowing that the days and years ahead weren’t going to get easier for him or our family. We felt anger while questioning, why him? And anxiety of, “How are we going to raise a child that is on the autism spectrum?”
Then came relief. We now had a possible reason for the behaviors we observed and knew there were services available to help him and us.
Early Signs of Autism
Daniel was placed into foster care at birth. He has been with our family since he was seven months old and we finalized his adoption when he was 19 months old.
While Daniel was in state custody, he received early intervention services his first year of life. There were times we would hear, “He’s been flapping his hands, should we be concerned about Autism?” We were always told that it could be normal for his age, but to keep an eye on it. It always seemed that once a behavior or mannerism was discussed, it went away and Daniel was on to the next thing.
There were times Daniel seemed to just blank stare, and we would ask about Autism or seizures. But again, that didn’t seem to be a continuous concern.
Daniel skipped the crawling stage, went from sitting to standing to finally walking at 14 months old. Again, a little out of the norm, but not a cause for concern.
Daniel started at a public daycare center at 16 months old and did great! He played, looked at books, did calendar time, and came home singing songs he learned at daycare.
At a parent/teacher conference was the first times we started hearing, “He’s so smart and fun, but…” He doesn’t play with the other kids, and he doesn’t sit at the carpet during calendar time or reading time (but wanders the room). They told us he was learning the information, but he was just absorbing it differently.
Finding Help
At that time, we decided to look into outside supports to see how we could best help him.
Daniel was about two years old when we first reached out to Beyond Boundaries Therapy & Wellness for an assessment.
Our main goal was to work on his social and emotional skills. He qualified for Occupational Therapy and the therapist visited his daycare to work with him. We saw some very small changes and were given ideas to use with him at home and in the daycare setting.
When he moved up into the next room at daycare, we heard the same reports and some new concerns. He was running out of the room. Although he wasn’t leaving the building, it wasn’t safe. He wasn’t playing with his peers, and he didn’t sit during calendar time. We also started getting reports of aggression — hitting peers, pushing peers down, throwing items, etc.
After the reports of aggression, we began looking at mental health play therapy for him. We wanted Daniel to be healthy emotionally, mentally, and physically. So we reached out to a counseling agency that offered play therapy. We brought Daniel in for an assessment and after four appointments, the therapist diagnosed him with adjustment disorder. She recommended we see a psychologist and look into Autism Spectrum testing.
Autism Diagnosis
We then had Daniel complete the ADOS (Autism Screening). After the assessment, the psychologist told us that Daniel met the criteria for an Autism Spectrum Disorder diagnosis.
The past six years have been a true rollercoaster ride of emotions. At the beginning of this journey, any time there was a call from daycare or school I had an immediate feeling of anxiety and fear of, “What happened now?”
Those feelings have slowly subsided as Daniel and our family have engaged in services and learned skills.
Support Systems & Resources
We have been blessed with an amazing support system of family, friends, and professionals. To parents just starting out on this journey, find providers you trust. Providers that spend time learning about your child and family and determining what’s realistic for your family. And then, trust those professionals’ recommendations.
Family & Friends
If you can, lean on your family and friends to help in a variety of ways. We have family willing to take Daniel for a night or weekend to give us a break. This support (especially when Daniel was younger and safety was our biggest concern) has been so beneficial.
We also have friends who are all accepting of Daniel and who he is. They understand if you invite us out for an event that lasts four hours, we will come but may only make it 30 minutes. Friends who can empathize and support us have also been instrumental in helping us feel that we’re not alone!
School Support
Daniel also has a school that supports him. When we walk through the halls, every staff from the administrative assistants, school social worker, paras, custodians, principal, and teachers all say, “Hi Daniel!” We joke about everyone knowing Daniel, and we wouldn’t want it any other way!
Daniel has also been able to keep the same para-professional for second, third, and fourth grades. She knows exactly how to work with him to keep him successful and moving toward independence.
He started kindergarten with no IEP or services in place. We knew he would need extra support, but didn’t know what would look like. He quickly qualified for an IEP and extra supports. In kindergarten, first, and second grades he received OT and speech in school. Receiving these in the environment where he was using these skills every day, we saw an explosion in his progress.
He is a fourth grader this year and continues to need some extra supports and prompting in school. He has exited out of OT in school, is still receiving speech for some social pieces, and continues to have para support throughout the day. Daniel still receives some pull out services for math, reading, and social skills to help keep him on track, but is able to spend majority of his day with his peers!
Therapy & Intervention
Getting Daniel into OT services with Beyond Boundaries was so helpful in the beginning, and we added in speech services and Physical Therapy along the way.
After receiving Daniel’s formal diagnosis we began Parent-Child Interaction Therapy (PCIT). As parents, it gave us the skills and language we needed to interact with Daniel in a positive and effective way.
He also participated in Applied Behavior Analysis (ABA) Therapy for about 2 years. This taught Daniel skills that were lagging, while also supporting and maintaining the skills he had developed.
After years of interventions, we knew we needed to do more to help Daniel’s body feel calm and in control. So we met with psychiatry and started medication management. This was a bumpy road. Daniel didn’t respond positively to the first couple meds tried, but we were finally able to find medication that worked well. We have seen amazing benefits as a result.
Looking Ahead
Going through this journey has been quite an experience. We truly believe that the combination of all the supports he has had, and continues to have, contribute to the amazing kiddo he is!
Our goal is to meet all the next milestones (middle school, high school, driving, etc.). We hope Daniel continues to be happy, continues to have friends, and keeps his love for learning and life!
