An Approach to Goal Setting for Severely Autistic Children

It's the end of June, which means one thing: graduation season is in full swing. And this week was Becca's turn. She officially graduated kindergarten and is now a rising first grader! We couldn't be more proud of her.

There is a quote often attributed to Albert Einstein which says: "Everyone is a genius. But if you judge a fish by its ability to climb a tree, it will go its whole life believing that it is stupid." I wholeheartedly believe this - and so it is important as we end this school year and enter the next, that we advocate for developmentally appropriate goals for our kiddos.

Developmentally appropriate goals are tailored to a child's developmental age rather than their chronological age. A child’s chronological age is their age based on their date of birth. A child’s developmental age is the age at which they function emotionally, physically, cognitively and socially. A child may be nine years old, but developmentally they may display behaviors that make them seem much younger. Understanding that there is often a difference between a child’s chronological and developmental age will help parents, teachers, caregivers, and providers to have more realistic expectations for the child.

When setting goals for children, especially those on the severe end of the Autism spectrum, it is important to consider the child's developmental age and not just their chronological age. Failure to set thoughtful, appropriate goals will result in a whole lot of frustration - not just for the parent or provider, but also for the child. The goals should be individualized and tailored to the child's specific needs and strengths, and they should also emphasize practical life skills and positive reinforcement. This will ensure that the goals are actually achievable in the long-term and reduce anxiety associated with working on the tasks in the short-term.

For children on the moderate to severe end of the spectrum, some key areas of focus might include:

Communication

Teaching the child to use words, gestures, or picture exchange systems (PECS) to request items, express needs, and participate in interactions.

Non-Verbal Communication Understanding and using gestures, facial expressions, and body language to enhance communication.

Increasing Vocalizations Encouraging vocalizations, even if they are not yet clear words, and pairing them with desired actions or items.

Social Interaction

Increasing the length of time the child engages with others and responds to social overtures.

Basic Social Interactions Practicing greetings, initiating interactions, and responding to peers in a simple, structured manner.

Turn-Taking and Reciprocity Learning to take turns in simple games or activities and engage in reciprocal interactions.

Daily Routines Mastering self-care tasks like handwashing, dressing, and toileting with increasing independence.

Following Visual Schedules Using visual supports to navigate daily routines and transitions.

Safety Skills Learning to identify and respond to basic safety signs and directions.

Functional Tasks Practicing tasks like packing belongings, cleaning up, and preparing simple snacks.

Recognizing Emotions Learning to identify and label basic emotions in themselves and others.

Coping Strategies Developing strategies for managing challenging situations, sensory overload, and strong emotions.

The idea is that because Autism exists on a spectrum, there is no "one-size-fits-all" approach, and each child's goals should be tailored to their specific strengths. Each child will develop at their own rate, and will often not meet the traditional milestones in a linear fashion - or by the arbitrary deadline we often set for goal completion.

Becca has been working on various communication goals for some time, and while it has taken some time to see progress, we are finally in a place where Becca understands language, and where she can more easily reciprocate communication with us - using gestures, vocalizations, and her AAC tablet. Today, we received her year end report card and progress report, and it was rewarding to see some of the goals listed as having been achieved this year. Some are still in progress, and they will be carried over to her next individualized education plan. And some of the goals that have finally been achieved have been on the education plan for a few years now. The point is that we have to be patient and consistent and (hard as it is) not get discouraged when we don't see the progress within the expected time frame. She will get it eventually!

It's also important, when creating these goals, to build in a mechanism for tracking progress, no matter how small.  We keep a journal of achievements so that we can easily revisit on days when we need to be reminded just how far Becca has come. Even on our most challenging days, I am grateful that Becca is not where she was a year ago. And we know she is only going to continue to grow from here. We build in systems for tracking and celebrating every achievement, no matter how small. And each of those small gains add up to big progress over time!

So what is the approach?

1. Determine the child's developmental age. The CDC milestones could be helpful here - not as a means of comparing your child to other children their same age, but to determine more or less your child's "age" based on which developmental milestones are emerging.

2. Work together with your child's therapy team to decide on the specific skills you want your child to learn for the year. Document those skills to make it easier to track them.

3. Break up each skill into smaller, manageable action steps. Parents and providers should collaborate on what those steps are so that the child is getting consistent messaging in school, program, and at home. Parents should try to integrate these individual tasks into every day routines to help promote independence. For instance, we do cooking and baking activities with Becca - which helps build life skills - but also works on motor skills, motor planning, and sensory integration. And there are so many tasks that work on multiple skills at once, so that the child is working on these skills but does not feel like they are in more therapy. For children on the more severe end of the spectrum, who are often in many hours of therapy a week in addition to school, this becomes extremely important.

4. Be consistent in working on the tasks - and tracking progress every day.

5. Keep a journal or find a way to celebrate the victories, no matter how small.

6. Take things one day at a time. Small, consistent efforts add up to big progress over time!

7. And lastly - and this is important - have some perspective and have some grace. Raising an Autistic child, especially one with high support needs, is not easy. There are very real challenges, and so it is important not to feel defeated if there are goals that we don't achieve within the expected time frames. Some children struggle with pica and try to eat inedible, dangerous items, some have no sense of danger, some elope, some never learn how to communicate verbally. All of these children are people before they are Autistic, they are all capable of learning, and we should only gauge progress by where our children were yesterday, not by where we expect them to be or by where other children are.

   
   

The approach is simple - step by step, day by day. And one day you'll look back at where you started and marvel at how far you've come.

And there's still a whole road ahead.