waiting for an autism diagnosis: little boy with autism

What Can I Do For My Child While Waiting for an Autism Diagnosis?

When you suspect your child may have autism, it can be a long wait to get an actual assessment and start helpful therapy. Parents can end up waiting months for their child’s assessment depending on the size of the wait list, and meanwhile they may be dealing with communication issues or challenging behaviours, and feel helpless until their diagnosis comes in.

What can I do while waiting for an autism diagnosis?

Even before your child has a diagnosis, there are a number of things you can do to help whether or not your child ultimately gets diagnosed with autism. The two main areas you can start to tackle, that are helpful for all children, are communication and time awareness.

How can I help my child with communication before an autism diagnosis?

Communication and language development are often the first red flags for seeking an assessment. If a child is not speaking or using gestures to communicate needs, a system of communication needs to be developed. Once this is in place, challenging behaviors often decrease.

  • Develop a communication system by using visual supports.
    Visual supports can be anything from digital photos of familiar objects and routines to pictures. (Note – there is a hierarchy to using visual supports. Start with using actual objects, then move to color photographs. For a clear step by step visual support guide click here).
  • Model how to use these supports.
    For example, if a child wants a drink of juice, use simple language and say “juice” then have the photo/visual handy and point to it. You can take the child’s hand and place it on the photo and say “juice”. Don’t worry about using complete sentences at this point. You just want to model using the visual with a word and a gesture such as pointing.
  • Create situations to increase communication
    When a child is having difficulty speaking, they often won’t initiate any interaction. Try placing a favourite item out of reach so that the child has to request it by taking you by the hand or giving you a visual picture of it. (Don’t do this if the child is a climber -or fearless- and will try to get the object on his own no matter where it is). Put a snack inside a jar so the child has to ask for help to get it out.

For more resources on visuals, have a look at Do2Learn or Practical Autism Resources. A good book to read on increasing communication is Motivate to Communicate.

It’s never too early to start introducing the concept of time

Even though young children can’t read a clock, they can understand a visual timer like a sand timer. I recently saw a type of clock called a Gro Clock that uses a star and sun system to show how the day/night is progressing. If the child wakes up in the night, they can look at the clock and see they still have 3 stars left to sleep. Knowing there is a beginning and end to things decreases anxiety for any child. Other ways to show time can be to create a schedule, then cross off the items or remove the picture as the sequence is being completed.

Play can be a great way to get communication going, and work on social cues

Try turn-taking games like ball games. Turn taking situations teach patience, waiting, and reciprocity. Great books for finding games to increase attention, interaction, and for structuring play are Playing, Laughing, Learning, Small Steps Forward, and Stepping Out.

Books are a great resource for learning about play because as adults, we often forget how to play.

Play will need to be structured if the child lacks imagination, manipulates objects (lines them up or moves them back and forth from one pile to another), or doesn’t include anyone else. You may need to model what to do with a doll and a doll’s house or how to build with blocks. If you are not sure how to structure play, have a look at the book Tasks Galore: Let’s Play.

If you’ve seen one child with autism…then you’ve seen one child with autism

Every child with autism is very different. I have a boy and a girl on the spectrum and I can tell you, they’ve needed very different kinds of support and tools. Start keeping a journal of your observations of your child that you can use for yourself to help you understand them, but also you can take these notes to a therapist etc…if you do get a diagnosis. Below is a short list of what to watch for, and take notes on in terms of how your child is interacting with the world.

1)Sensory Processing Disorder

Sensory integration dysfunction (or sensory processing disorder) can be another early red flag. Examples of this can be:

  • strong aversions to certain fabrics
  • sensitivity to noise
  • high or low tolerance to pain or touch
  • seeking sensory input by jumping on or running into furniture
  • marked dislike of having hair washed or teeth brushed
  • extreme discomfort over clothing tags, or seams of clothes

The list is quite large on this topic. Observation is key here. This is another place that a journal can be very helpful: what seems odd about the way the child interacts with the world? Do they hate having their hair washed? Teeth brushed? Need many blankets piled on to sleep? Can’t stand the seam at the end of a sock? This list of things will give you a sensory profile and a place to start for helping the child soothe the senses. Great books to start with here to learn more – The Out-of-Sync Child or Building Bridges Through Sensory Integration.

2) Challenging Behaviours

Challenging behaviour is another reason parents seek a diagnosis. This can include but not be limited to:

Children want predictability and a way to make sense of the world. If the information coming in is not able to be organized, chaos happens. Challenging behaviours can often be addressed through sensory integration, having a communication system in place, and visual supports to put the environment in to some kind or order or structure.

None of what I have suggested is to take the place of a formal assessment or professional recommendations from a speech pathologist, occupational therapist, psychologist, or any other professional. These are just some ideas to move things forward and help a child improve their skills while you wait for a diagnosis and the professional help suggestions that come with it.

 

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  1. Pam Galloway says:

    Excellent advice for parents. 

  2. CA Jenkins, Asperfemme says:

    The lived experience of other autistics cannot be overstated.  Many have written extensively about their own childhoods.  Yellow Ladybugs is a good online resource for parents of girls, who tend to be mis- or late-diagnosed.

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