Only one thing is worse than a therapy plateau – and that is a regression. Both plateaus and regressions are something that we have had plenty of experience with. In fact, just the other day my husband came in all upset because he had found some of Michael’s old favourite books. The reason he was upset is that it has been nearly impossible to get Michael to look at any kind of book for the last year and a half for longer than five seconds. He used to get me to read to him for hours. So yes, we know all about regressions. And plateaus.
These things are part of our life. Like nosy neighbours, we have learned to deal with them and neutralise their effect where possible. This doesn’t mean that they leave. They stick around, and always know exactly when our guard is down, know it is safe to come over into our backyard and tell us off for all the things we have done slightly wrong in the last month. But they don’t upset us, and in many ways they are our old friends that are there to alert us when something is not going quite right. They serve a purpose, they mean well, even if it is not always pleasant to see them.
These plateaus and regressions are very upsetting to parents.
Partially it’s because of the comparison monster. My niece could do things at 10 months old that Michael may not be able to do for years. And she didn’t need to be taught them thousands of times. Or rewarded.
Partially it’s because the lack of these skills affects our every day life. If my child can’t feed himself, it means I have to. If he can’t walk beside me on the pavement and needs to be carried all the time, that’s 17kg of toddler breaking my back or needing a pram. And that will only increase with time. When he stops reading and decides he can’t stand books at all, this can have an even more debilitating effect on his life and on mine. And of course some of these skills may never come, which not only severely limits what he will be able to do in life, but also what I, my partner, and any other siblings he may have, can do.
Other parents regain a measure of their old lives as their kids get older and more independent. We may never be able to do it to the same extent as them. That is why regressions and plateaus hit us so hard.
Michael has many little plateaus and regressions. But these are some key strategies that we have successfully used to get him (and ourselves) through these moments.
1. Get Involved
There is a tendency among parents, when their kids are in early intervention, to leave everything up to the therapists. This is a huge mistake. Every study ever done shows that parental involvement will hugely increase the effectiveness of early intervention.
Yes, hours of early intervention are important. Yes, your supervisor and preschool teachers are incredibly valuable and doing a fantastic job. But nothing can replace parental involvement.
There have been countless times when Michael has plateaued at some skill and I or my husband pulled him through it. This doesn’t mean we physically forced him into anything, by the way. It just means that we used our superior knowledge of our child to figure out why he is having trouble with this skill, and to help him through it.
To illustrate with a recent example. Michael has a matching program that he has been doing for about a year. It starts off with 3D to 3D identical (so a blue sock goes with a blue sock, a red ball goes with a red ball). Then it graduates to non identical (blue sock goes with yellow sock, the red ball goes with the blue ball). Eventually it moves on to 3D to 2D (so you put a sock on a picture of a sock) and vice versa. Finally it goes to matching picture to picture. The ultimate aim of this program is to put items into categories as well as being a good method to improve scanning (being able to look at several things at once) and even teach reading.
Anyway Michael was stuck on 2D to 3D for about six months. There were only two items, one picture. Or two pictures and one item. We tried different pictures, different sizes, we went slowly. Nothing worked. He just kept getting an average of about 50% which meant he was guessing since there were only two options. It was extremely discouraging because how is a child that can’t tell the difference between a big picture of a red peg, and a big picture of a blue water tube (one of his toys) going to learn to do anything even approaching reading?
So I ran some science experiments. Yes, on my own child. I asked him to do some shape sorting – he learned to do it quite well in a couple of months. So it wasn’t a cognitive issue. He was also quite good at puzzles. And when I asked him to sort 3D items by colour he did it in two seconds flat. I didn’t even have to teach him. So he wasn’t colour blind. And he could sort small 3D items just as well as big ones, so it was highly unlikely to be a vision problem. It was a 2D image problem. Something about 2D images didn’t sit well with his brain.
Next, I decided to try some really simple pictures. I laminated an A4 big blue triangle, and an A4 big yellow square. Then I asked my therapists to teach him to match a blue triangle puzzle piece with these images. And he got it almost immediately. He has been going on about 100% since then, with eight different shapes. Next, I am going to print off some similar shapes but make them the same colour to make sure that he is looking at the shape and not just the colours when matching. He is currently sailing through his program though and I will eventually make the pictures a big more difficult, until they gradually become more similar to ordinary flash cards.
Many other things in his therapy have come through in a similar way. Yes, it is important to listen to the professionals (since you’re paying them and all). But you can’t drop it and go.
2. Try a Different Approach
This works with therapy types, but also within the therapy you are using. There is nothing stupider than doing something that doesn’t work, over and over again, for a year. It is frustrating to your child, and it is frustrating to you. No good therapist should be asking you to do that.
Some skills, Michael learns very naturally and quickly. Others, we have to work at for a few months and then they just miraculously come through. But if you have been working on something for six months and there is no progress, or even regression, this is probably a bad approach for your child. Usually a good therapist or your paediatrician will have suggestions for other ways to approach something. It is always good to see a developmental paediatrician every six months or so anyway, with or without regressions. He/She should be able to give you some good suggestions or send your child for further testing if required.
You can also try widening your circle – asking other types of therapists (an occupational therapist, a speech therapist) or looking for suggestions online. Remember to filter out all the pseudoscience that litters the Internet. Asking professionals that specialise in that particular problem works well. For example someone that knows a lot about ADHD, or speech problems. It may even be time to switch therapies altogether or at least providers, if the one you are with is just not working. Remember not to do this too soon though, I always think that six months is a good trial period.
3. Don’t Just Focus on the Negatives
I don’t know if everyone is like me, but if my child is having trouble with a particular skill I focus in on it. That is the only thing that I think about. If he can’t even do this (skill) how will he ever be able to function independently/read/write/catch a bus?
He could be making huge progress in six other things, but I will just see this one that I just did with him where he struggled. It’s completely unfair to him and there is very little I can do about it.
But there is something you can do to stop yourself. One thing that’s great about ABA is how optimistic it is. We write down everything. So when my brain is telling me ‘he just hasn’t learned anything in a month’ I can go back over the month and tell it ‘look, he can now drink from a cup, and he said mmm for more five times yesterday. Shut up brain you don’t know what you’re talking about.’
It is so important when you think you have hit a plateau to look at all the things they have learned. Keeping a list of them somewhere within constant easy reach (like your phone) is great. It feels fake at first but makes for some great reading when you’re feeling down. Sure sometimes you are in a genuine plateau or regression. And you should address individual skills as well. But you can’t forget all the amazing things they have learned because you are too busy focusing on the ones they haven’t. And by the way this all goes for any child, whether they are NT or autistic.
4. Come Back To It
There are some things that Michael has learned that progress naturally from what he wants to learn, or from where he’s at. Ideally that is how you learn most things. But sometimes he is just not ready for a skill, developmentally. And I just have to have faith that eventually he will be there and he will be able to learn it, even though that day is not today, next week, next month or even next year (ahem, Friends marathon, sorry).
Sure many things can be taught with repetition. Or with an alternative approach. But sometimes they can’t. For example, it can be very counterproductive to put a child into speech therapy too soon and expect actual speech. Many other skills have to be in place before a child speaks and you can force them all you want – you may just end up with a very upset child. Working on the other skills, and helping them with alternative communication methods, can be much more productive. It will also make them much happier, which should at least be the ultimate goal of any early intervention.
Eventually the other skills you work on may come together and they may be ready to imitate sounds. Other skills like basic imitation, shared attention, your relationship. Or maybe they never will. But either way the other things you teach them will become useful in their lives and gives them alternatives. Coming back in a year may be the best strategy.
5. Just Keep Swimming
Repetition and rote learning gets a bad press these days. If you do any kind of repetition with your child you get accused of being a dog trainer, or of stifling their interests.
It doesn’t matter what tactic you use, as long as it works eventually. Repetition works well in some things with some people. And it works well with all people depending on what you are teaching. I remember my driving instructor making me do endless right hand turns, and I won’t even mention the reverse parking practice…When I learned my times tables, I rote learned them from a table on the back of my exercise book. I ran drills to learn to touch type and it is now so much in my muscle memory that I can type at 90wpm. Drills and repetition are an important part of learning.
My son had to do 1000 trials before he learned to point. Now he does it fantastically and uses it to communicate his needs to us. I couldn’t care less about what the teaching process looked like.
And if you ever see us practising our basic commands (sit down, turn around, stand up, stamp your feet) it will be really puppy-training-like. But he needs that approach to learn those combinations of words. It works. Without it, he does not learn. He can now follow many basic instructions that many other kids with ASD cannot. It means that the world makes a little more sense to him. And it makes life a bit easier for me.
The important thing to do with repetition is not to just give up, but also not to take it too far. It does work. Things that you think your child doesn’t even come close to understanding can suddenly ‘click’ at a point six weeks after you have decided it’s never going to happen. On the other hand, if you’ve been doing it for six months and nothing has clicked, then it is time to try a different approach.
6. Maintain, maintain, maintain
One of the most painful things that can ever happen to a child with autism is when they lose a hard-won skill. It happens all the time. I used to come close to having a nervous breakdown every time but I think my nervous system is close to being a breakdown-olympic-champion these days and can withstand any pressure.
The only way to combat this is maintenance. Half of the time in therapy, and outside of it, we are simply maintaining skills that Michael already has. Making sure he does things at least once a day, by himself. Asking for something with PECS, putting away his own toys, doing the ring stacker. I can’t even estimate how many times he has forgotten and relearned some of his toys and trust me, just maintaining them is much easier. Every second time I do any program or any skill, it is just maintaining what he can already do. I never take any skills for granted, even the ones I think are firmly in place.
Most importantly – don’t burden your child with your problems
Let me preface this by saying that the reason I emphasise this skill, is because it is so hard for me. There are many times in therapy when Michael just cannot learn something, or has forgotten something that it took me six months to teach him. And I nearly lose it. How can he be so stupid that he can’t give me the sock? There’s only two items in front of him, one of them is a ball, why doesn’t he look at the items before he gives one to me? He has done this for six months!
But I remember that this is not about me, this is about helping him. He is not stupid. He just learns differently. My anger is not about his issues, it is about mine.
It’s not about ticking a chart of skills somewhere, or being able to tell his next assessor ‘yes he can go up and down stairs by himself’. The entire point of the exercise is to help him become a happier, more independent adult. And the most important part is his relationship with me not how well he can drink from a cup.
If I feel myself getting frustrated with a skill, I leave it. It is much better to give up on a skill than lose your temper at your little one. Your relationship is the most important thing you have. Teach that skill later. Do it only once or twice, if it is something you personally find very frustrating. Ask someone else to help you with it. Come back in an hour, after doing something they are really good at for a while. See a counsellor if you need to, or chat to another autism parent. The most important thing about parenting a special needs child is that you cannot offload your emotional baggage onto them.