Question: I would love more information on raising a child with Aspergers. Thank you!
I appreciate this question and while it is very general (and I could write books on the topic!) I thought I would start by giving families a little bit of a ‘what to expect’ when raising a child with Asperger’s, or as it is now called by our new DSM-V, Autism Spectrum Disorder.
For those of you who are unfamiliar with this recent change, we have a new version of our diagnostic manual which was released in May of 2014 which effectively eliminated the diagnoses of Asperger’s Disorder and Pervasive Developmental Disorder (or PDD, NOS) from our nomenclature.
Now, all medical/health professionals are instructed to use the universal diagnosis of ‘Autism Spectrum Disorder’ and are asked to specify each child on a continuum (Level 1, 2, or 3) based on the severity of their symptom presentation, impairments, and on how much support they require in therapeutic or educational settings.
For most children with a diagnosis of Asperger’s disorder previously, this translates to a Level 1, or Mild Autism Spectrum Disorder in our current DSM-V. This means that social challenges, communication challenges, and behavioral challenges exist and require a certain level of assistance – but are not at the severity level that requires full-time therapies or special education.
Now that we have our diagnostic framework out of the way- here is a summary of what I consider to be some of the general expectations parents can have in terms of raising your child with mild autism spectrum disorder.
- Social interventions – As your child’s primary struggle is in understanding social cues from others, interpreting others’ actions, behaviors, and interacting in socially appropriate or ‘expected’ ways, social interventions such as social thinking groups, social mentoring, and social coaching should be a constant. The degree and manifestation of your child’s social challenges should be expected to evolve as they mature, and their cognitive development can help them learn skills that were not initially intuitive for them. Nonetheless, we typically see that as children gain skills and improve, they do so at a rate that may not keep up with other children’s rate of social development. So continued coaching and instruction can help them approach new social settings and developmental milestones with a ‘manual’ or ‘decoding key’ for how to interact and make and maintain social relationships with same-age peers.
- Social anxiety – Social anxiety is very common when you don’t understand what someone else is thinking or feeling. If you don’t understand how to interpret someone’s body language, gestures, tone of voice, or facial expressions, it can make you anxious to no end as you may misinterpret their intentions, judgments and actions. So it can be very anxiety provoking to enter novel social situations or situations where you are not familiar with someone, as you are constantly ‘in the dark’ about how you may be perceived or viewed by others. As a result, many children attempt to cope with this anxiety by attempting to mimic their peers and engage in what they see as ‘normal’ behaviors – often intently so. Your child may resist any ‘pullout’ services (for fear of being perceived as different), or may kick and scream on the way to social thinking groups… for fear of how others may perceive him/her. Social interventions as discussed in #1 should help in alleviating this anxiety by helping your child decipher other people’s feelings, thoughts, and perspectives. This in turn helps them avoid the misinterpretations that cause their anxiety.
- Resistance to taking direction from others. Some children’s social difficulties result in learning challenges, because if you think about it, learning from others is intrinsically a social and reciprocal activity. In order to learn, you need to accept gentle corrections, redirections, and instruction, while interpreting accurately the intentions of your teacher or parent who is trying to help. If you have social challenges, you may misinterpret direction from others as criticism, or negative feedback. This can lead children to avoid attempting learning activities that are difficult and they may refuse to do activities that require a lot of adult instruction or supervision. Again, alerting them and correcting their misinterpretations about others’ intentions should help with this.
- Needing things a certain way. Rigidity is par for the course. Children on the autism spectrum often don’t handle change very well, especially when it comes unexpectedly, or when they are asked to transition away from a preferred activity. They can also be very ‘all or none’ or concrete in their thinking. Either they did something right or they did it wrong. Their math homework was hard or it was easy. Something was ‘fair’ or it was ‘not fair’. Teaching kids the ‘grey area’ in life, can help them with regulating their emotions when things go wrong. This can and should be a continued area of focus to help them learn how to be more flexible in their thinking.
- Challenges in reading comprehension and written expression. Many children on the mild end of the autism spectrum are great early readers. They learn phonetics well and can become fluent in reading in the early grades. However, usually at 3rd or 4th grade, teachers will notice that reading comprehension is an area of struggle. This is the time when children are asked to use abstract thinking skills (e.g. ‘reading between the lines’, inferring content, or generating the ‘main idea’), and this may prove more difficult. The answers to reading comprehension questions are no longer found in the text, and children are asked to infer or understand underlying meaning. Academic challenges also arise in written expression when children are asked to generate paragraphs or stories around a topic. Just as in oral expression, written expression requires social thinking – you need to write with the listener or readers perspective in mind – so that you can plan out what to say first, how to present your thoughts, etc. so that the listener can follow you, etc. Plan accordingly to allow your child to have extra support in literacy skills such as these so that language arts do not become an arduous challenge.
Please let me know if you have more specific questions, or if there is an area I can expand on! I realize there are lots of areas to explore…!