“Declan, can you point to the animal in the picture?”
Declan was 2, and in the process of being evaluated for services.
Instead of answering the evaluator’s question, Declan squatted to the ground, put his head on the carpet and walked forward, pushing his forehead into the ground.
“Declan,” she continued, “which one is the dog?”
Declan stood up, ran over to her, took the card out of her hand and threw it. Then he ran around in circles, shaking his head while staring at the ceiling lights.
“Declan,” she persisted, “Say DOG. Can you say the word DOG?”
I realized what she was getting at, and I was getting mad. Declan could say DOG. We had 3 of them! He knew all their names. He called them. He played with them.
“Declan say DOG!” I yelled.
But the running in circles continued.
“This is ridiculous,” I said to the evaluator, “He can say the word DOG. You should write that down. He can say it. I don’t know why he is not saying it, but he shouldn’t be losing points because he didn’t say it. He can say it!”
Mom, Dad, Bobby, Dadee, dog, our dogs names, up, down, on, off – these were a handful of the words Declan used at 18 months when I took Declan to the pediatrician for his well visit. There were no big concerns. He got his shots, we went home.
In the next six months Declan’s behavior became increasingly erratic and unsafe. I took Declan back to the pediatrican when he was 2 for his next well visit. All those words he knew? It took me a while to realize it, but they were gone. This is when the pediatrician felt something was different and he needed to be evaluated.
(Side note – I do not believe vaccinations cause autism, but can you see why some parents might?)
When I look back to those first 18 months, I can think of a handful of Declan behaviors that I thought were a bit odd. But he was hitting other milestones. He sat unsupported at 6 months. He was walking at 10 months. He used his first word “Dada” around his first birthday. Those weird behaviors? Not letting others hold him – literally throwing himself out of their hands? Difficulty sleeping? Screaming at soft touch? Those were just weird behaviors, right?
When the evaluator above left that day, she calculated that Declan had Developmental Delays and was 8 months behind. Which was HARD for me to accept. Where was the Declan I knew? How much more was he going to regress? How much more skill was he going to lose? Would he ever gain it back?
That was a scary, sad time. And Declan required 24/7 attention just to keep him safe. Things were so very hard. But yes, things got better. We learned the awesome power of Early Intervention. Support was given, skills relearned. And some of those other infant quirky behaviors began to make more sense.
Autism Parenting Magazine provided me this infographic which is filled with some very useful information on Regressive Autism. What it is, facts and signs. Also, if you click the infographic you will be taken to the Autism Parenting blog and be provided with more information on the subject. Check it out!
It is so annoying when someone can make a judgment on just one visit!
Her visit led to Declan being seen by a lot more people and getting the help that he needed – but her visit was the hardest to take. In the end, I am thankful for her.
That’s true. 😊
We knew Ben was autistic by the time he was one year. I don’t know if it was just an intuitive thing, but we knew. Unfortunately, his pediatrician told us he couldn’t be evaluated until he was three so we lost a lot of time.
I think it would be harder to have them lose skills, like Declan than to just be extremely delayed developing them, like Ben.
I had a hard time saying the skills were gone – I just kept telling them “I know he can do this! He does it all the time!” And then I was seeing new things – like him shaking his head back and forth, running into things full speed on purpose or being in a room and not noticing the people in it. It was just overwhelming and confusing – once I could admit “I have no idea what is going on” and just went with what the professionals were telling me, and let them coach me on how to help him, things started to make more sense and get better.
Our son increasingly started displaying the classic traits (flapping hands, lining up toys, obsessive interests, eye contact) from about his 2nd birthday. He wasn’t officially diagnosed until 5 years later. It wasn’t until then that we came into contact with expert autism specialists. I think it’s improving but it did feel like the general health and education professionals we dealt with in the early stages were just not up to speed on Autism. It was until he was 7 that we started to get a handle on the what Autism meant in practice.
This is something that really gets me upset – that an autism diagnosis really is in the eyes of the beholder. Meaning, if you get someone not familiar with the autism spectrum, then your child with autism isn’t going to get the diagnosis he needs and therefore, the support. I took Declan to a private speech therapist when he was younger – she had been a speech therapist for thirty years. Declan was already diagnosed with autism, yet she insisted he did not have autism because “he will, on occasion, make eye contact with me.” She was not up to speed on autism. The pediatrician we saw when Declan was four, was older, and asked if Declan was a savant like Rain Man. He was also not up to speed on autism. I am glad you got in contact with expert autism specialists – for you and your son!
The only problem with reading your posts is I LIKE the posting of information you have done, but I DO NOT like the facts actually exist! Can’t imagine how you made it through this stage of Declan’s life. You are so much stronger than I could be in a similar situation!
I was really confused to what was happening – I’m just glad Declan got into services and he is doing great now! Happy ending 🙂
Ashton Deroy from Swan Whispers Public Relations. The Autistic Ad Agency hubbed on WordPress.com , http://www.SwanWhispersPublicRelaions.ca
“I don’t believe in outgrowing autism personally. I believe that attaching certain behavior mods create a domino effect. I am an autistic cross dresser. I still try to dress to a certain civil dress code. However, I had catholic/conservative relatives modify me too much! Next thing you know I was clinically depressed & hospitalized.”
I don’t believe in Autistic regression. I just believe in Autism.
HI Ashton, I don’t believe one ever outgrows autism either. Autism regression has do with a baby/toddler who is developing typically all of a sudden losing their speech and social skills. My son knew a lot of words, but by the time he turned two he had lost them all. Even though he regained his speech, he still has autism and will always be on the autism spectrum.
Hey Robyn I am glad to hear you don’t believe it. I made the argument here because it has a lot of traffic. There are a lot of dumb spots on the internet where people think you can outgrow autism. I do reply slowly because I currently am in between homes & rely on public WiFis.
I need to share the infographic & to my personal & professional Facebook account. Thank you for your consideration & awareness.
Ashton Deroy
This is not my infographic to share – this belongs to Autism Parenting Magazine.
Hi Robyn , I will re-embed later.
Our daughter regressed after her 1 yr checkup and had all of those shots. Not saying that caused it, but as you said you can see why we could think that. She is 8 now, but still on the level of a 2 to 4 yr old depending on the area of development.
At first, I didn’t even notice that I was answering grunts, and not words anymore. It was hard for me to say the words were gone when I had heard him say so many. Thankfully, a couple years later, they came back 🙂
Regression must be such a hard thing to see and to accept. But with early intervention such a key aspect, it’s hard not to make that push, I suppose. It’s just hard for anyone to be ready to hear it.
And you’re right – it’s a tough coincidence that autism can really start to present itself around the age of vaccines, but that’s all it is, a coincidence. I guess some parents feel better about having a “villain” to get angry at, but really this needs to be about kids and doing everything we can for them.
Early Intervention was great – they opened my eyes to so many Declan behaviors, and then they taught me what I could do to help him. The stress we were all feeling in the day to day was being relieved as we were using these new strategies.
Yes, I agree and admit that I even went mentally back to determine what may have happened. There is enough information out there to say “it’s not the vaccinations.” And you’re right – it really doesn’t matter. It is all about the child’s needs – not blaming something or someone – just help the child.
Robyn, thank you for always sharing about Declan and his journey. When I finally do get a chance to catch up on my readings, yours always hits home with me.
Thank you, Anna! I am glad you can relate.
Parenting an autistic child requires a lot of love and disheartening sacrifices. But we cannot give up as we are their one hope. You are full of strength.
I agree! You’re right!
I’m almost face-palming myself. I’d heard of these and totally forgot to invest in one. I probably assumed my kid wouldn’t wear one. But it’s worth trying.
And, I think I replied to the wrong Article. (Second face palm in a row. That’s a record.) I read a link about identification bracelets after this story.
Done now. Thanks.
Gotcha 🙂 No biggee – I really do support the ID bracelet. So helpful!
I love following other families’ journey with autism. My son sounds so similar to Declan. He was my fourth child, the three older being neurotypical, so I noticed the regression long before his pediatrician and she didn’t agree at first. He was first diagnosed with a speech disorder, then ADHD and finally ASD. It’s an all consuming way of life for our family and the changes we have had to make have caused us to resemble nothing of our former selves. But, the compassion and empathy and joy we experience on the other end of the isolation is enough to make up for it. Thanks for sharing!
Wow, yes! My husband and I often notice how different we are now – but all in a good way! Thanks for sharing!
My son’s regression began closer to three. It was mostly visible in his interactions with others and his anxiety over things not being a certain way. But the quirks were subtle and hardly noticeable. He had reached his milestones early. Sat at 4 months, crawled by 5, walked at 9, spoke his first words by one, signed eat and more before he spoke. He was very coordinated. He could kick, dribble, throw and catch a ball. At age 3 he began having big meltdowns, At 3 years 8 months he began having nightmares and began talking about monsters. He began to throw himself and began repeating the same thing over and over. He had strong separation anxiety. He got diagnosed with autism at age 4. At the time of his diagnosis, he could still speak, identify his body parts, answer questions about a story and interact and play with his cousins. His speech recommendation was for his inflection, pitch. By the time we went to his speech evaluation just just 2 months after receiving his autism diagnosis, he couldn’t even say a complete word. He couldn’t select basic shapes or colors. He went from being fluent in two languages to non-verbal. Now at 7, he even struggles with signing and identifying pictures. Regressive autism is tough.
Oh my gosh, yes. It is so hard. I hope the cobwebs clear for your son one day that he may restore some of the skills and language he once had.