Positive regressive autism stories

[bear321]

I’m looking for positive stories of children with regressive autism.

My DS is 2 years and 4months. Up to 19months old he seemed to be a typical baby/toddler. He hit all his milestones at 12month HV check. He was a very social little boy always smiling and interacting with others with great eye contact. We think he had started to say a few words albeit not consistently my any stretch. He would also follow a couple one step instructions eg get me the book, where’s your head. He’d point, wave and clap.

At 19months old he seemed to change almost over night. He could no longer do the above. Would not use eye contact at all. Would ignore us when we walked in the room. Won’t respond to his name. Wouldn’t interact at all. He stopped playing with any toys. All he would do is run back and forth from two points and flap. He took hours to go to sleep and woke the night for hours just thrashing and running up and fish in his cot. He also became really picky with food. this all started when I was very early pregnancy with our DD (now 8 weeks old).

since then we have clawed back some eye contact, he will occasionally turn to look at you when you call his name or walk in the room. He will play with toys briefly ( not in an imaginative way) but still struggles to meet his sensory seeking needs (lots of repetitive movements). Since having our DS he has had chicken pox and fractured his leg and seemingly gone backwards again.

I’m looking for any positive outcomes as struggling to come to terms with what has happened. I feel I’ve lost my baby boy and so scared to lose him anymore and the same with my DS. I’m so desperate for him to talk, even just to say “mummy’.

Hi OP, I'm so sorry that you're feeling this way. My son, now 2 years and 9 months old, also seemed to withdraw into himself as he approached 2 years old. He used to be great with eye contact, would wave hi and bye, mimic us and then that seemed to disappear. Over the past four months or so, he has made so much progress. He repeats words and fills in the blanks with prompts. His vocabulary has grown from about 15 words to 100+, even if he doesn't use them regularly. I have seen a big improvement in his understanding and more interest in following instructions and responding to simple questions like 'what does the cow say?' He has started pointing too and responds to his name more consistently. The health visitor was concerned at his two year check up and at our follow appointment a few months later she said that he is much more engaged and such a lovely, bright boy. I did still push to be referred for an ASD assessment.

Your son is still so young and he will grow and develop. It sounds like he has been through some big changes and illnesses recently, maybe that also contributed to his regression? Have you spoken to your health visitor or GP and had his hearing checked? We saw a huge improvement in my son when we limited screen time. Admittedly, he was watching way too much tv. I have also been reading the Hanen book More Than Words, which has lots of great tips for building social interactions. We noticed that he loves marine animals and reading books about the sea, playing with sea creature toys and visiting the aquarium and musems have been great for his language, pointing and sharing interest.

Please don't lose hope, your son is still so young and it sounds like recently he has made some progress again, which is great news.