Some time ago I was reading an article by a parent who was commenting on her surprise that
her child was suddenly gaining a myriad of skills – seemingly out of the blue. This was not just happening in one area, but in multiple areas: her previously non-speaking child was using new words and in the correct social context, trying new foods, and also open to new sensory experiences.
What I have noticed over the years with H is that his progress is anything but even – especially if we look at it on a small-scale. There are days when it has definitely felt like the cliché two steps forward – one step back. (However, I suppose there is often truth or reality at the centre of a cliché – and a noticing of a pattern or a tendency – or it wouldn’t be a cliché in the first place.)
It can be difficult to see those steps backward – but what I have learned is that the way to deal with this is to focus on the big picture with my child’s development. Here is the guiding question I try to ask: When considering the big picture (an image of your child’s development over time) is the trajectory of progress positive? If so… the little day-to-day blips, hills, and valleys are likely not of major consequence in terms of development.
When H was first identified as being Autistic, it was reinforced for us by some very wise professionals that this was a life-time journey: that parenting a child with autism/Autistic Child was a marathon and not a sprint – and we have tried to operate accordingly. In retrospect this has been useful advise and we have held it to some extent as a guiding principle. Our child is developing differently than other children – at a different rate that is not necessarily attached or correlated to the number of wax candles on his birthday cake.
There is another element that I have noticed with this, which bears consideration, and that is that my child, and others on the Autism spectrum, find comfort in sameness and predictability. The world can come at H unevenly and his response can seem uneven as well. I can understand his resistance to change and his uneasiness with new and different. Of course we would be doing a disservice to H if we allowed him to settle forever in this zone of comfort – never extending the boundaries. The stretch to new skills and experiences and discoveries – that is how progress is made. However, it is critical to recognize that this resistance serves a functional purpose and to honour the message that is being given.
My child needs time to settle into his intense interests to recharge. He needs time to focus on the things that give him pleasure so that he has the resiliency to tackle the daily aspects of his world that can be difficult for him. He needs to soak and relax in the familiar feel of his Lego, his favourite computer game, or his current intense conversational topic of interest so that he maintains his sense of self and is able to feel that he is honoured by himself and others for just being who he is in the moment.
And then… and bear with me please as I try to weave this together and bring us all full circle… it must again be considered that H and others like him are working doubly hard to make their way. So what I have noticed with H is that sometimes what might appear to be a step back is actually a retreat to the familiar: a metaphorical dipping into the familiar of the Lego bin where the world is predictable, the pieces fit in a pattern and the rules and roles are known. A behaviour, that we thought we had left behind, might recur because it is functioning as a safety net: it is familiar, known, and predictable – even if it may not be preferable, or particularly rewarding, or useful.
Along with all of this resistance to change and a tendency to cling to the familiar, is the developmental consolidation that happens after periods of great growth and development. Sometimes I have noticed that H may seem like his development has come to a halt – or flattened, but that is not the case. When he has gone through a time of rapid and intense development, he levels out as he is developing proficiency with his new skills. I think parents need to hear this – and teachers too.
I have noticed with H (and other children on the Autism spectrum) that development occurs in stages and steps (like it does for all of us). It is a cycle of a creative period of noticeable growth – the attainment or acquisition of skill or knowledge, often followed by a period of consolidation – during which the skills or knowledge is absorbed, practiced, generalized to new situations, and then added to the repertoire of skills… and then made one’s own.
In optimum circumstances there is a progressive forward motion to these cycles… but I have also observed that for my child multiple cycles seem to exist in many different areas across domains and that they may be cycling at different rates. There are areas where my son is much more advanced than his neurotypical or non Autistic peers, and there are areas where he is most definitely lacking the expected sophistication for a child of his age. Regardless, he still needs to follow the developmental steps for the attainment or acquisition of
skill or knowledge, and we are learning (still) to be aware of the space, pace, and place of the unique developmental needs of our child.
I think it is impossible to know just how far my child, or any child, will go with his development. We cannot always predict the future by where we are this very moment, but we can have a certain faith in our children and in our interactions with those who are struggling that the possibilities for growth are amazing. For our children who are struggling with social learning, self-regulation, and countless other challenges as they navigate their way through life, it is good for us to be reminded that those steps forward, even when they are halted, tentative, or almost imperceptible – can take our kids a very long way.
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30 Days of Autism is a project designed to fight stigma, promote civil rights, and increase understanding and acceptance for those who process and experience the world differently.
© Leah Kelley, Thirty Days of Autism, (2012)
Thirty Days of Autism 
Great post! Most people forget that many kids with developmental “disorders” actually develop faster than normal in some ways too. You do have to look at the big picture with autistic kids, like you said.
I was one of those kids who didn’t speak very much until I was about 2 or 3, and then I spoke with perfect grammar and a fairly high vocabulary. I was actually learning language the whole time. I remember it well. But I didn’t feel comfortable using it until I knew I was already somewhat proficient with it. I used spoken language very little until I felt like I knew what I was doing. I wonder if other autistics are that way with learning, and if maybe that might account for the apparent developmental spurts. Maybe the learning process is steady and gradual and what appears to be a “spurt” happens when the person feels comfortable enough to start using what they have learned. I was that way with a lot of things. I wonder if that is a common way for people on the spectrum to learn new things and develop socially.
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Thank you so much for your thoughtful and insightful response. It is interesting that you shared your experience about your own language development. It has me connecting to stories my mom has told me that I didn’t speak much until I was 2 – and then began speaking in full sentences. I also made up my own words and refused to answer to my name – I preferred to make my own names for myself…
I think you are right that sometimes knowledge is being accumulated and confidence and competence is being built before proficiency with a skill may be evident to others. It is an important consideration, as well, when we are contemplating those times when it may appear to others that very little growth is occurring. The period of consolidation can come after the rapid growth – but you bring up an excellent point – for some individuals it may happen before the growth is evident.
I love it when you leave a comment and nudge me in a new direction – or add another layer to my own process! Spectacular!
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I love this post! You have put into words things that I have noticed about Daniel through the years. In addition, you have some other great insights! I found that he progressed rapidly when I kept “sameness and predictability.” This is a post I will come back to.
We are moving in the next few weeks and I am feeling anxiety about it and how he will respond, but I am trying to make it as predictable and stable as possible. I don’t mean to, but I do have the lingering thoughts that he could loose some of his abilities because of the massive change.
I am thankful for Aspie Kid’s comment as well. (I am dealing with my own Aspie anxieties that could be making my thoughts fuzzy. :-))
Thank you for sharing!
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Thank you for your lovely comment. The move is a tricky thing…
I know what you mean about feeling anxious as a parent. It can be so hard sometimes to unravel and determine what is my own anxiety and what is my son’s. There is such an interplay between the two… and I find that I have to be very aware of keeping my anxious feelings controlled or it just layers on to my son’s and makes it more.
For your son, I suspect that with the move there will be a period of retreat into some former habits, behaviours, comforts, interests… and then he will carry on from there. The idea of this post, really, is to make us all a little less concerned about what we might see as a step backward or a leveling off… because if we look at the greater function of these periods… they are often constructive for the development of the child.
Here is a link to a PDF of a visual support about moving that might give you some ideas: http://www.google.ca/url?sa=t&rct=j&q=&esrc=s&source=web&cd=6&ved=0CHsQFjAF&url=http%3A%2F%2Flakewoodcityschools.org%2Fuserfiles%2F2139%2FClasses%2F10476%2Fmoving%2520social%2520story%2520one.pdf&ei=6sTNT5rEAeGA2wXQhfy2Dg&usg=AFQjCNFeI3s-2Im24Rk74tggmRMXs2WwAQ&sig2=gta-zms86foBGSH3Afo3og
I also know that kids can be very sensitive to loss… and there is a sense of loss when moving to a new home: a loss of the known and familiar, and a loss of people at times, or of a bedroom, etc. I think it is really important to make sure a child understands that the things you are packing up are not also being lost.
A strategy might be to take photos of your child’s room now – and if you are able, to work to have some help recreating it to some degree in your new home – I think you will assist your child in feeling more comfortable and “at home.” Also, if your child (depending on their age) can spend some time elsewhere doing fun things during the exhausting and somewhat chaotic process of moving day – that may also decrease the stress for all involved.
Let us know how it goes 🙂
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This is a great post and it is all about looking at the bigger picture. Its not until we actually sit and think about all the achievements that we actually realise how far we have come. Its like it all comes together at once and it amazing when it happens. I have found that my childrens development is very much they have a developmental leap than plateau again
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Thank you Wendy! 🙂
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Thanks for your insight. I too find the same with my son, and I think it absolutely resonates true with the routines and sameness. I have a period of time for him after school where he can watch whatever he likes to unwind from school. It makes him really happy, and whilst he is scripting his favorite lines from different movies, overall I have found his functional language is improving and he seems to be trying to engage in his classroom which is wonderful.
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It is so great that you are so sensitive and responsive to your child’s need to regroup and recharge after a long day. At our house we also run the captions under the shows so that the written word is present as well… sneaky parents slipping in the reading at every opportunity!!
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Now THAT is a brilliant idea! Using it! Thank you!
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Awesome!! Yay!
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This post sounds so similar to what I have found to be true with my son, who has Aspergers and just turned 6. I have read a bit about asynchronous development in gifted children and it sounds so much like what occurs with a lot of children who are on the spectrum. I am not saying all aspie kids are gifted or that all gifted kids are aspies but it’s so interesting that asynchrony exists so obviously with these kids.
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Yes… I have seen some similarities as well.
And too… there are lots of things that are true for kids with autism that are true for the development of every child… they just seem sometimes to be more amplified, intense, and heightened for our guys on the spectrum.
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Thanks for sharing your experiences! When I first heard “Autism is a marathon, not a sprint” I thought, “Yeah, it’s a marathon, but we gotta sprint the whole way!” and my family has. I think you’ve very nicely captured the steps of progress in your story. Do therapists suggest what parents can do to make the consolidation efforts more potent?
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Thank you for your comment Dan. Yes… sometimes I feel what you are talking about. I think what has worked for us is to try to slow things down and pace ourselves so that we have the stamina to continue. It has us examining our priorities very closely – and sometimes opting out or eliminating things that are not all that important. We are becoming masters at “good enough thinking” and being able to let go of perfectionist ideals.
I am uncertain what a therapist would say about periods of consolidation…
For me it is about understanding that my child needs these retreats to the familiar – and time for new skills and concepts to consolidate. I see it as a kind of dance… and in many ways I need to be responsive to the steps of my child as he leads the way… and also to notice when I need to take the lead, or teach a new step…
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I had a heart-to-heart with one of my OT students last week, who asked me about his having autism:
http://otinpublicschools.blogspot.com/2012/06/do-i-have-lot-of-autism.html
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Wonderful! So well said! I’m printing this out for me and my husband to remind us!
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We have had such a crazy summer. I re-read your post at such a timely moment. I tend to be caught up in the daily details and seeing the bigger picture is difficult for me. You gave me cheer and hope today.
Thank you, Leah.
Lori
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Aw… thank you for your comment Lori!
It can be hard at times not to focus on minutiae… especially because that is one of the strategies that is of benefit: noticing the wonderous little things about our lives and our journey with our children. We all need a reminder to step back and look at the big picture occasionally. I am glad this post was the right thing at the right time… nice when that happens!
Hugs!
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Well today girl you hit the spot. Had a big set back for my youngest. It’s hard sometimes. I truly believe in what you are saying and have been saying the same thing for years. I also make jokes about the marathon. It should be part of the Olympics I sware. Some days I feel like I’ve done a million hurdles. I’ve seen slow steady progress and fast progress then slow again with my eldest son. It has been quite the journey watching him grow and become the boy he is now. We’ve had many steps forward and few steps back. My youngest son is the one who I often have to remind my self. He’s making progress just not the same as everyone else. His journey is a longer but amazing one. The road is more hills and pit falls but it’s got a lot to offer. Dont know if that makes sence since I’ve been lacking sleep for two weeks now lol. I think it’s important for all parents to never give up trying to teach the skills a child needs cause you just never know when today is the day the words come or they hold that pencil. My son had a hard day today but he said words to three people today. One was a stranger and one was a kid. He is so awesome. Celebrate the amazing parts of the journey. Today I celebrate this day. Thanks for the reminder I needed that pick me up. I really did.
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This is simply beautiful! Perhaps it was a difficult day for your little fellow and for you – but I love how you find something wonderful there too!
Thank you so much for sharing with us! ((Hugs))
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Love the idea of a metaphorical Lego box . . .
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Reblogged this on Think the Infinite and commented:
Autism parenting is a marathon, not a sprint… Excellent post by 30daysofautism!
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