Will these behaviors ever stop? Getting the big picture of behavior and autism

Will these behaviors ever stop?

Getting the big picture of behavior and autism

My head felt like it was going to explode when my son was diagnosed with autism in the mid-1980s. The diagnosis explained why he was flapping and spinning, but the “A” word stuck in my throat. Some parents, mostly mothers, have told me they were relieved when they finally received an official diagnosis because they knew something was wrong. Regardless of where one fits on the spectrum of reactions, the mind goes fast forward to the future and can’t help wondering what will happen:

  • Will these behaviors ever go away?
  • How well will my child be able to communicate?
  • Will she live independently?
  • Can he have an intimate relationship?
  • What will happen when we are gone?

Since autism is invisible and diagnosed through behavioral observations, it is natural to focus on behavior. It’s natural to imagine that if we can make the behavior go away or at least minimize it, then a child may recover. Some of the behaviors of our children on the autism spectrum can also be so disruptive that this becomes our entire family focus. This article will attempt to provide a perspective on these questions which trouble most parents.

Initially most autism treatment focuses on reducing problem behaviors. Our children need to learn adaptive behaviors to be accepted by others and to bond with their families.   The positive behavior supports approach helps parents and professionals address issues in a relatively new way. Instead of using traditional rewards and punishments, positive behavior supports assumes that all behavior is communication. Parents, teachers, and therapists collaborate to determine what the child is attempting to communicate and teach skills and alternative behaviors to meet the child’s needs.

What we know from recent research

Children with autism grow and mature as we all do; the symptoms may change but rarely disappear completely.  Recent research from Deborah Fein and colleagues (2013) shows that a small percentage of children diagnosed with autism does move off the spectrum.  According to the researchers, these children learned to communicate and socialize much like their typically developing peers, but they remained mildly affected by conditions, such as anxiety, depression, or impulsivity, which slightly affected their social functioning. The children who lost their diagnosis had milder symptoms in early childhood, learned to process faces through intensive intervention, and had fewer self-stimulatory or repetitive behaviors.

Seltzer and colleagues (2000) found a pattern of change from childhood to adolescence and adulthood. 82% improved in communication and social interaction, and 55% showed less repetitive behaviors. These researchers concluded that the symptoms of autism lesson in severity over time and that the best outcomes occur for those with higher IQ scores and better language skills. Overall this shows compelling evidence that the troubling behaviors parents struggle with are likely to change over time.  These research findings are cause for optimism if supported by adequate services in adolescence and adulthood.

Another team of researchers, Taylor and Seltzer (2010) found overall improvement in autism symptoms and internalized behaviors in young people over a 10 year period. Rates of improvement slowed after leaving school though improvements did seem to continue, just not as much or as quickly. By age 21, young people with autism who do not have an intellectual disability stop receiving services. After that point in time, these individuals improved at a slower rate than individuals with intellectual disability who still had services.  So given what we know today about how children with autism grow and develop, with adequate resources and support, it is realistic to expect progress and lessening behavioral challenges.

Surviving and Thriving

In the meantime, while we wait for the hoped for change, how do we live with the uncertainty of what the future holds for family and child? How do we handle the next tantrum or meltdown? What about the struggle for services? Here’s the approach that I have developed for myself and that I teach families through my writing, speaking, and counseling:

  • When you feel the stress take a few slow breaths and notice your reactions: thoughts, feelings, sensations in the body.  Like the weather, your unpleasant feelings will pass.
  • Check out your expectations and adjust if necessary.
  • As your mind settles a bit, examine your choices to cope in the moment.
  • Refocus from the behavior to big picture values such as helping your child grow.
  • Spend some time each day joining your child on the floor or at the table or a screen having fun, following your child’s lead, and building connection.
  • Your child with autism is still a child and needs more than therapy in her day.

Sometimes it may seem that no progress is being made; the child may take 2 steps forward, 1 step back. Over time our children do grow and change, just like everyone. It takes hard work by all involved—families, professionals, and children, teens, and adults living with autism.  Sometimes it helps to remember that we are all doing our best.

Facing the Future 

Parents cannot control the outcome for any child, but we can have a full and rewarding relationship with a child growing up with autism. There is solid scientific evidence that individuals with autism continue to develop in adulthood. This makes it reasonable to expect continued slow steady progress just as with typically developing adults. We never stop being parents—our job just slowly changes through the ages and stages.

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Robert Naseef, Ph.D., is the father of an adult child with autism.  He is the author of the new book Autism in the Family: Caring and Coping Together from Brookes Publishing, which covers living with autism from diagnosis through adulthood.  He is a practicing psychologist at Alternative Choices in Philadelphia. Visit him on the internet at www.alternativechoices.com

References

Fein, D., Barton, M., Eigsti, I.-M., Kelley, E., Naigles, L., Schultz, R. T., Stevens, M., Helt, M., Orinstein, A., Rosenthal, M., Troyb, E. and Tyson, K. (2013), Optimal outcome in individuals with a history of autism. Journal of Child Psychology and Psychiatry, 54: 195–205. doi: 1

Seltzer, M. M., Krauss, M. W., Orsmond, G. I., & Vestal, C. (2000). Families of adolescents and adults with autism: Uncharted territory. In L. M. Glidden (Ed.), International Review of Research on Mental Retardation, Vol. 23. San Diego: Academic Press.0.1111/jcpp.12037.

Taylor, J.L., Seltzer, M.M. (2010). Employment and Post-Secondary Educational Activities for Young Adults with Autism Spectrum Disorders During the Transition to Adulthood. Journal of Autism and Developmental Disorders. 41, (5):566-74.

7 thoughts on “Will these behaviors ever stop? Getting the big picture of behavior and autism”

    Comments

    • Aspiewordsmith on June 18, 2015

      A child can learn to live independently and even thrive and this means to allow the child to learn to use his or her autism/Asperger syndrome and especially using techniques like thinking out loud which is in effect being your own care support worker. This also is particularly with people on the autistic spectrum that are highly visual thinkers or as Temple Grandin calls thinking in Pictures

    • YellowBirch on July 1, 2015

      Throughout this piece I see a person with a desire to ‘change’ or ‘cure’ people on The Spectrum. I really don’t see a need for all or even most of us to be changed. I’ve always known that I was different from others and have struggled with that for over sixty years. I rejected medication and some behaviour modification efforts because I didn’t want to lose myself. Ironically, I self medicated with cigarettes and alcohol for years, trying to escape from the realities of the neurotypical world.

      Those of us who don’t want to change don’t understand why the push to make autistics appear ‘normal’. Unless we are physical hurting ourselves or others, does our stimming really make a difference? By definition, it is our response and attempt to accept the rest of the world. Is it really important to lose the diagnosis? Is the ultimate goal to appear normal? These desires are always what NTs want so that they can be comfortable around them. They don’t take into account our comfort whatsoever. Do you really realize that we expend a great amount of energy and effort it takes to act ‘normal’? So many of us need days to recuperate. Tony Atwood described it best with his “tree in a clearing” analogy. If we compensate for a less mature ‘social tree’, our other, dominate trees will tire more easily and will not fully function in the way they should. Why try to cripple us? Accept us and allow us to function in our own normal, natural way. We don’t need to change, you need to understand us and accept us for who we are and what we have to offer.

    • outlander on July 6, 2015

      I am not sure if everyone sees the value of stimming. There is a positive side to it and it can be a tool. I cannot speak for all aspies or how well they can use stimming to an advantage. My own case is that I ended up on the high IQ end of aspergers, and I was never diagnosed as a child despite all the classic signs were there. I was examined at the child guidence center but they never figured it out back then and school for me in the 50′s & early 60′s was HELL for me, but I got really good grades from 8th grade onwards (I worked out my own ways by then, though I never got the bullying stopped. I did however end up with a PHD teaching engineering. While I was useful to my employers, when I became a college instructor and finally professor, I had my own office to cut the distractions and had my employers in industry only given me an office to cut out the distractions, I suppose I could have served them even better.

      But I still have stimms and have even devises less obtrusive forms of the ones that work. I use them deliberately now that I have discovered what they do and what benefit they can yield. If you think of stimms as an attempt to impose stability on the mind with a physical action, (usually if not always a repetative action), then you may see that they are an attempt to stabilize the mind against a barage of distractions either internal or external. This is precisely what stimms do for me. My need for them is less these days and I use them to keep my mind on task, I have cultivated ones that are not particularly obtrusive and do not appear all that much beyond the scope of normal.

      Possibly my best example is finger snapping when I am looking for something. It merely looks like I am impatient about something, but the action and sound of repeated finger snapping keeps my mind focused on looking for an object and prevents my mind from wandering off on other thoughts even pressing ones.

      Exactly how does it work. I am not sure, but while I am doing it things seem to almost magically appear, often while I am looking right at them and not seeing them. The finger snapping brings my mind back to task and I remember that is the thing I am seeking.

      Needing something (e.g. a tool) is a distraction to the task at hand. The overall task is dominating my thoughts and the finger snapping seems to break that dominance for my search efforts to bear fruit. The primary task at hand and/or a myriad of minor distractions are interfering with the necessary ancillary task of finding the tool. Frustration rises but the rythmic stimm is like some sort of metronome for regulating the mind and getting it to work orderly.

      Ok, while that is my take on the matter, it suggests that a child having fallen into a stimm behavior is really trying. Albeit others may see it as distractive, annoying, and inappropriate. I probably bug some people while looking for something on the shelves in the store and snapping my fingers, but it is minor, and not so wierd to them as if I flapped my hands.

    • beechnut on August 18, 2015

      Much of my diagnosis was hidden from me as a child. My mother didn’t really tell me until a year before she passed. I spent all my formative years in boarding school, and had to nearly fight my own civil war in order to escape from the situation. But all through adulthood it seems that we aspies have to choose our words with care, paying attention to how the other person is likely to hear you. (At least more so than so-called “normal” folks need to).

    • akaRiley on September 4, 2015

      My diagnosis has been said 2 – 3 years ago, and i have never been blamed for meltdowns ever since. I think that the fact that “your child has autism” is very sad and we should spread awareness.

    • Pieplup on February 17, 2016

      @akariley I disagree with your opinion completely. I think this, because that Autistics are 3 times more likely to be Abused than neurotypicals. Also, Autism Speaks, are Fear mongering for Financal gain. This is why the Majority of the Autistic Community Hates the Origination, and as a Aspie, once got sued for saying, “It’s NT speaks.”. I can’t agree more with this. #Nothingaboutuswithoutus

    • GreenSky on May 3, 2016

      A parent of an autistic child once asked me “Why do autistic people stim?” I told her the same reason NTs stim. She was shocked and said when do we stim?!? I explained its like a good stretch in the morning, a runner’s high, or when you masturbate. When I am stressed out I can just stim. Different stims have different levels of enjoyment. It is our way of coping with life.

      BTW if you want to see a big group of NTs stimming… go to a rave and look for people on xtc.

      For me the lights and music = instant stim. No drugs needed.

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