Friday, November 1, 2013

Regression. Does it Really Exist?

Alexandra Holt posts "Regression. Does it Really Exist?" on Suburban Mamma

Something that I feel quite strongly about in regards to ASD, is the idea of “regression”. The notion that a child will begin life in a “typical” way - smiling, making eye contact, interacting with others - before one day, suddenly falling down the autism rabbit hole never to be seen as a whole person again.  A shadow, somehow, of their former, promising, supposed-to-have-been, self.

I reject this. And I will explain why.

Autism Spectrum Disorder is a very complex thing. There are certain things that autistic people struggle with innately, and certain things that autistic people do brilliantly. We are, simply put, different.

Changes and struggles are a normal part of ASD. It is not necessarily a regression from NT development.


We need to remember that autism is different. Ups and downs are normal. Sometimes, autistic people one day just suddenly feel different. Nothing necessarily caused that; it is just what autism is. It is still a relatively unknown territory, science-wise.

When my children were babies, I saw them struggling when they were tired. They didn’t like to be in restaurants, they didn’t like to go to strangers and they preferred to smile at them from the safety of my arms. They didn’t want to sleep alone, they didn’t like the textures of certain foods, they gagged at the smell of the salty seaweed at the beach, and they gagged if I went into a public toilet to change their nappy. They sat at the shops, in the trolley or in the mei tai or in the sling, staring at the shelves, eyes flicking from item to item. They didn’t sit there slobbering and clapping and laughing constantly like the other babies did. My babies laughed. They smiled. They loved. They played. But there was always something a bit different about them. Not enough difference for others to notice. Just things that I noted and that I helped them with. It was information that I used to plan for everyday life, to make their life easier, and to give them the environment that they needed to thrive.

As they got older, they became more aware, and the world became more intrusive. They reacted more strongly, and began to express their dislikes more. They started to have meltdowns when they were overwhelmed, instead of crying and breastfeeding off to sleep, or instead of rushing into my arms and cuddling me to hide. They started refusing to go into restaurants and shops, refusing to go near others, snatching toys from others, laughing when they felt sad, and screaming when they were stressed. They started instinctively responding with aggression and rage when something went wrong. Their speech didn’t develop typically and their communication showed itself in different ways.

So, what happened to my babies?

Well, they grew up. And they changed, as we all change with age. As all children change as they age. They didn't “regress”. They had always been on their own developmental journey; an autistic one. They hadn't begun life as “normal” children with a switch later being flicked that turned them into “autistic” children.

Autism is neurology. That is a big deal. A pervasive big deal.

What concerns me mainly, is the way that autistic behaviours are so often seen as anomalies, as evidence of trouble or worry, as evidence of regression or becoming lost. Autistic behaviour has its own path, and we must respect it in its entirety, and for precisely what it is. It is normal autistic development. 

And normal autistic development may look something like this….

When I get into a situation and realise that, for whatever reason, I cannot translate a skill that I do have (or that I did have or that I thought I had or that I had used successfully before) into the situation, it really sucks. When I wake up some days and can barely function in the NT world, that sucks too. Sometimes, I just have something else that is taking up my energy, and my other abilities are just dormant for the time being. It is hard, and it can be frustrating to have that happen. 

However, although this is frustrating, it is also normal. I am autistic and that is just what happens. It has happened to me for as long as I can remember.

It is not as simple as assuming “regression” and wishing that you could have back the child who you thought you had, or who you wished you had, or who you swear you had just last week or last month or when they were a baby. Your child changes constantly. And those changes are a part of them.

It is also a lot more complex than face value in terms of whether a person is able to do something specific at any give time. There could be any number of other factors involved in that – stress, diet, sleep patterns, sensory environments, hormones, age, relationships, family pressures, therapy overload or inappropriate therapy, social expectations, work load.

Your own perception of these behaviours could be changing to match your own preconceptions too. You might be okay with a 3 year old having a meltdown but anxious that your 8 year old is having one. Your 4 year old might hit when angry but a 9 year old doing it seems worse. These differences in perception are not necessarily your child regressing or getting worse.

There are many things that can impact upon a person’s visible day to day abilities. And there are many things that can impact upon our perception and translation of what those abilities might mean or warrant.

Consider this: You generally don’t hear people grieve for the fact that their NT children have tantrums, or wear nappies in babyhood, or learn to crawl before they walk, or that they need someone else to cook their food for them.  Noone says, “Oh, I love my child. But it would be so great if they didn’t need to wear nappies, or for me to cook their food, or for me to have to wait for them to be able to walk. I wish I could just take the “child phase” right out of their brain, cure it and help them to be more independent.”  Noone says that, because we are all aware that those things are normal for children.  It would be not only disrespectful but silly, for us to say these things. We know that children, and people,develop. We all change, we learn, we grow. We can one day do the thing that the day before we could not do.

We understand and respect their development, their need to be given time, their need to learn about their world. Some people certainly get it wrong, but as a general rule we understand the basics of NT human development. 

So, why are we not more open to the differences of autistic development? Why do we insist upon holding our autistic children's developmental graph up to a NT graph, finding it constantly lacking? Autistic development is just not accepted and respected as a valid development.

Autism is a difference in neurology, and must not be considered an inferiority. The notion of difference being synonymous to inferiority is incredibly flawed.

Many autistic people lead lives requiring high levels of support. Whilst this is a part of the spectrum that differs from other parts; all autistic people deserve for their abilities and selves to be respected and not lamented. 

NT development has its own set of rules and events, its own assets, gifts, and strengths.

Autistic development has its own set of rules and events, its own assets, gifts, and strengths.

NT development has its own difficulties, setbacks and problems.

Autistic development has its own difficulties, setbacks, and problems.

The simplistic notion of “regression” is, in my belief, damaging the right of autistic people to be respected for who they are and for what they can offer.

At the very least, we need to not see “regression” as the simplistic and tragic concept that it currently is.

We must always respect the right of autistic people to be different and to develop at their own pace; a pace that we cannot decide, and that we cannot reasonably denounce. No matter how much they have "regressed".

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