When Bethany was two years old, we knew nothing about what I now refer to as the Autism Cha Cha. We saw very few steps forward. It was like Bethany developed to the age of nearly two and then just stopped hitting milestones. We couldn’t engage her with books, or even toys. She couldn’t talk and we could barely get her to respond to us when talking to her. If we did have eye contact we could get her to smile, or sometimes babble or giggle; but getting her to make eye contact was a struggle. The only things that really seemed to engage her fully were music, video, and physical activities such as soft play, the park and puddle jumping.

Bethany was born with cleft lip and palate, so we were getting lots of advice from the Cleft Speech and Language Therapist about ways of engaging her focus and attention that we might model to her how to say different sounds and words. Nothing seemed to get her attention for more than a second..

Bethany’s behaviour deteriorated as she struggled to communicate with us, and we struggled to understand her. Sensory information overwhelmed her ability to process that information as Bethany fought against all the necessary daily rituals of teeth brushing, hair brushing, washing, and eating. At that point it felt like we were going backwards, never mind forwards. She spent her days watching Disney princesses on TV, scattering toys everywhere (but not playing with them), and lining up stickle-brick people on the table.

I didn’t understand what was going on. I didn’t know about Iceberg Theory. I didn’t think about behaviour being communication. I was out of my depth and had no idea how to parent my wild child. I started seeking help from professionals and googling Bethany’s symptoms and behaviours. I finally realised that my child was probably Autistic.

We eventually started getting advice and support. I attended some online workshops and a longer online course by the National Autistic Society. Bethany started attending some day-care play sessions, to give her some play therapy and social interaction. I got a much-needed break. Slowly, we began as a family to make progress.

However, with Autism, you can often take a step forward and then regress a step or two backwards. It’s sort of like a Cha Cha. Just when we start to feel like we’ve figured Bethany out and we’ve got this Autism thing covered, a sudden regression happens to keep us humble. Illness, a change in routine, a new situation: these things can all be difficult for autistic people to handle and sometimes cause a regression.

In the early days there was no progress; then with support and training we started to feel like we were making some progress followed by some regressions. Maybe it was one step forward and one step back. In the past year or two, Bethany has made huge strides in her development. Her “Cha Cha” has been more like two steps forward, one step back and repeat; but the overall trajectory has been forward motion.

It’s not a case though of progress towards becoming neurotypical. Bethany is always going to be Autistic. As her parents we want her to progress towards being able to cope with things that happen daily in our neurotypical world. We want her to be thriving, rather than barely surviving. We don’t want her to live her life shut away from the world, but rather we want her to experience the good things in life. We want her to feel supported and happy even when life at times is a lot harder for her because of her disorder. We want her to be flexible enough to cope with real life changes that she will have no control over. Above all, we want her to be able to communicate her needs, whether by using Makaton, pictures, a technological device, or even hopefully by talking.

As a parent, there is a lot of joy in seeing your children grow up and meeting their milestones. Crawling, the first word, talking, standing, walking, starting school, learning to read, doing sums, making “best” friends, moving up to High School, passing exams, finishing school, driving a car, attending college or university, dating, getting married, having children of their own. For Bethany and many other children with special needs, some of these milestones will never be reached. But we can jolly well celebrate the milestones we do see!

This past week, Bethany started saying, “I coming,” when we call her name. How wonderful that she is responding to her name! Last weekend she figured out how to pedal her bike properly. She regularly sings pitch perfect although the individual words are unclear. She knows her alphabet. She displays aggressive affection through tight squeezing hugs and repeated kisses. She can ask for a drink or food. She can let me know she needs help with her personal hygiene needs. She often say “ank you” (thank you).

Bethany is sometimes able to let me know she feels unwell, by saying “owie” and pointing perhaps to her ear. She moved up a class at Easter due to the progress made since September. On Friday I took her to Tesco, and she coped with me doing a small top-up shop; without running away or lying down on the floor. These are milestones for her. It is a joy to witness them. It’s a joy to see her happy and thriving.