An autism diagnosis can bring major life changes for families and there are few resources available to help as they face an onslaught of important decisions. There are no easy solutions to address feeding difficulties, sleeping issues, and behavioral concerns. The stress on family life is truly taxing and there is little respite even if a caregiver is blessed with a short period of reprieve. When a reprieve does arrive, parents inevitably use the time to coordinate and figure out their next move.
As a parenting coach and behavior analyst, I have witnessed many families arrive in my office completely confused and bewildered about the options available to them and the important next steps in their journey. I am well aware many family members who sit down across from me have already been through a lot just to get to the meeting.
I know and understand families with children who are diagnosed with autism, who engage in a variety of difficult to manage behaviors, are beyond exhausted. I know the family member is likely teetering on the edge of his/her own mental exhaustion; I’m most likely not the first professional he/she has spoken with regarding his/her child and he/she expects I will deliver more bad news.
He/She has also likely come to accept this stressful life is his/her new normal and the phrase “these are the cards we were dealt” runs through his/her mind often. Parenting is not for the faint of heart, but to be perfectly honest, in my 20 years of experience I have come to believe parenting a child on the autism spectrum is on an entirely different level.
Autism Parents are Superheroes! Some of the behaviors families tell me about include unsafely running off, fecal smearing, urinating everywhere, food refusals, head banging, pinching, hitting, biting, and destroying property. I have heard been witness to it all. Quite frankly, this is just a small sample size of problem behaviors these families deal with daily.
In my clinic, I work with families to help reduce negative behaviors and the effect they can have on the family. As part of this work, I ask families to help me peel back the behavior layer by layer. As this work progresses, we are sometimes surprised by how much the behavior perseveres in different circumstances.
Here are several tips that can help parents working with their behavior analysts gain greater control of the progress their child makes:
1.Take data to your clinician
I get it, I’m a parent too and this sounds like a lot of work. But we have these amazing tech gadgets in our back pockets that make data collection super easy (your phone!). Please bring the data to your clinician as it truly is the only way a problem behavior can be reduced, and a solution can be found.
2.Work closely with your Board-Certified Behavior Analyst (BCBA)
Tell him/her everything. Book appointments to see him/her regularly. Use this resource as much as possible. Make sure your BCBA knows all the things you deal with daily.
3.Bring in videos for your BCBA to review
If you have to deal with a behavior, take a video of it. If you are in the grocery store when it happens, ask a bystander to take the video for you. When you review this footage with your BCBA, you’ll get a wealth of feedback on things you can do in the future.
4.Keep Open Communication between yourself and your Applied Behavior Analysis (ABA) team
If you ever have questions or concerns regarding your ABA program or team, do not hesitate to work things out with the team. As a clinician in ABA, my main goal is to ensure the work I am doing is socially significant, which basically means I want to ensure I’m helping people with the thing they want help with. If I’m not, then I need to take steps to rectify that. behavior analysts are essentially expert problem solvers. Communication is key to making sure everyone is on the same page.
When you meet with your behavior analyst, it is imperative you ensure you fully understand how to implement the recommended steps to ensure your child’s target behavior reduces. However, there may be times you leave a meeting and aren’t sure how exactly all the recommendations apply to every situation you find yourself in. For example, you may have been discussing aggressive behaviors such as hitting, punching, and kicking.
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Based on the triggers analyzed by your behavior analyst, they have provided a treatment plan that includes ignoring and functional communication. However, when you get home that afternoon, your child begins engaging in screaming, crying, and throwing things around the room. This is the most frustrating thing. Now things are different, and you might be unsure how to handle him/her in this situation.
Here are a few general tips to help you succeed in dealing with the behaviors you may encounter without having the chance to talk with your behavior analyst.
Sounds so easy right? However, if you child feeds off your behavior, escalating will only increase the behavior’s intensity. Most importantly, this is about self-care. The more you take care of yourself in between and during all those difficult moments, the more prepared you will be to maintain your control during challenging situations.
2.Maintain your expectations
Even in a heated situation, ensure your child does what you want him/her to do. This may require you to initially lower your expectations but overtime you can gradually increase them. By reducing the demand slightly, you may encourage your child to move away from engaging in the behavior. But by dropping the expectation altogether, you will likely reinforce your child in that moment and the behavior will either worsen or continually re-emerge. Don’t worry about regression, it’s truly just change of expectations momentarily with the goal to increase.
3.Redirect to something more appropriate
If possible, try redirecting your child to engage in behavior you can reward. For example, when a behavior such as throwing items begins, you might stop the behavior by redirecting his/her attention to another more appropriate activity. You might redirect to completing a chore or an imitation with his/her hands, which is the complete opposite of being able to use his/her hands to throw things.
4.Look at the trigger
If you take a moment as soon as the behavior finishes to consider why it might have occurred in the first place, you may stumble upon a clue as to what you need to do. If, for example, your child wanted something (e.g., a favourite toy), you could wait until he/she engages in appropriate behaviors before giving it to him/her. In another example, if your child was told to do something when the behavior occurred, you would follow through with your expectations (see above). In a third example, if your child engaged in certain behaviors to get your attention, you should ignore the behavior and redirect him/her to another more appropriate behavior (see above).
Overall, no matter what your circumstance is as a parent, you have inside of you all you need to know. Your child is very fortunate to have you help him/her navigate his/her challenges through life. If you need any support, seek out a behavior analyst who can assist you in determining your next steps.
This article was featured in Issue 102 – Supporting ASD Needs Everyday