Unregulated behaviors in children on the autism spectrum and the common reasons behind these are well documented with a wealth of strategies for parents and educators to try.
For those parenting a child with an actual or suspected dual diagnosis of autism spectrum disorder (ASD) and Obsessive Compulsive Disorder (OCD) there is far less understanding of the effect of the combined conditions by professionals and even less helpful support in terms of materials and interventions.
Anxiety led behaviour and the need for control of the environment is common in both conditions. However the reasons for the need for control are different. The common mistake is to treat all anxiety led behavior in the same way using evidence based ASD interventions.
Unfortunately, some of these interventions can exacerbate anxieties and behaviors if they have an OCD root. This can leave parents and educators alike feeling de-skilled and unsure of where to turn to for help.
Be your own OCD and autism practitioner-researcher
The good news is, that as a parent or educator of a child sharing a dual condition, you are in the best place to observe your child and begin to unpick his/her behavior and the underlying causes. Starting with the response “HELP! I don’t understand and I don’t know what to do, is actually a great place to begin”. It is the questions that we ask ourselves that lead us to make discoveries that turn situations around.
We know that every child with combined ASD and OCD barriers is a different child, so the questions we need to ask ourselves will need to match our child’s individual situation. There is a lot to learn from those who have been there before us however and so reading about or listening to others who have been in a similar situation is another important step to positive change.
Top tips for relieving anxiety in a child with OCD
- Carefully observe any behavior rituals to identify their source. Note those that lead to high level anxiety outbursts when interfered with
- Remember that if a behavior is identified as being compulsive then the child cannot control this him/herself at first. He/she needs an adult to step in and put clear environmental controls in place
- Initially the anxiety behavior will increase in intensity when boundaries are put in place and this is difficult to observe. Work as a family or school team to support each other through this difficult but hopefully short phase
- Ensure that adults around the child do not panic or show emotional reactions to the anxiety meltdowns. This will feed and prolong this part of the process
- Begin by controlling or prohibiting the behaviors that are causing the child the most anxiety and work down the list as each one is eradicated. Be sure not to use obsessions to bargain with children. They need to trust us and the structure we put in
- Be observant to any new ritualistic behavior or any behaviors that return and put in the same strong boundaries
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Case Study: one child’s experience of autism and OCD
A clear example of a child with both autism and OCD is Kian. He was admitted to The Link School with a diagnosis of ASD and language disorder in common with the school’s admission criteria. Professional assessments highlighted sensory processing difficulties as one of his main barriers. Challenges with the vestibular sense (a drive for body movement) and proprioceptive sense (a need for particular positions in space) meant that he was always ‘on the move’, rocking on his chair or running around walking on his tip toes.
His hypersensitivity to tactile sensations meant he had difficulty with kinaesthetic areas of the curriculum and was avoidant of them. He had a heightened need to control his environment and obsessive behaviors around what appeared to be narrow interests, such as watches, calendars and traffic lights. These all impacted on his ability to attend to learning activities and therefore capacity to make any educational progress
What we did
Our initial approaches centred on usual evidence based strategies for children with ASD such as visual supports to bring meaning to the structure of the day and a sensory diet programme under the guidance of an occupational therapist to alleviate his sensory and emotional regulation difficulties.
Unfortunately these strategies that worked so well for other children in Kian’s class had little effect on his anxieties and ritualistic drives. In fact his interests became so narrow that he was unable to focus on anything else. At his worse he did not attend class or enjoy activities either on his own or with peers. Instead he spent time in the corridors adding to an exhaustive list of things he needed to continuously check and control including the shutting and opening of doors and blinds and controlling access of others to the school toilets.
Recognition of another possible diagnosis
At this crisis point educators started to ask questions about the lack of impact of usual interventions and asked themselves what else could be the cause of such strong and debilitating drives. Signposts to researchers studying the commonalities and differences between ASD led anxiety and OCD led anxiety seemed to describe the pattern of behaviors we were seeing but struggling to support.
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What we did next?
Careful observation and recording of Kian’s behaviors and his reaction levels to rituals that were purposely interfered with by staff started to give us a picture of the strongest behaviors that were OCD led as opposed to those that were relieving sensory regulation needs. These were shared with the whole team so that the correct intervention was matched to the root drive. Ritualistic behavior, such as the drive to walk around the room or bounce on the trampoline were allowed as these were relieving a sensory need. However rituals related to OCD, such as opening and closing doors were time and place limited and over time prohibited.
Initially there was an upsurge in Kian’s anxiety and distress at having such strong drives limited and removed. However this quickly turned to acceptance and then relief that adults around him were understanding and taking control of his compulsions. Within a matter of weeks Kian was unrecognisable as the same child. His anxiety was markedly reduced, he was remaining in class for all lessons and participating and engaging in a wide variety of activities. This in turn led to an improvement in his academic attainment.
A hopeful conclusion
Recent studies are beginning to outline the prevalence of OCD in the anxiety behaviour of those within the autism spectrum – up to 17% of those with demonstrable anxiety driven behavior could actually fall within this dual category. Even though to a trained clinician’s eye OCD compulsions resemble the ‘insistence on sameness’ or repetitive behaviours many ASD children show, those that know the child with a dual presentation well, will have the best capacity to unpick what is really going on.
Trusting your knowledge and judgement, and taking courage to act as that consistent boundary that your child needs to break their compulsions should provide a positive long term outcome. Look out too, for a friend, family member or practitioner who will support you through the tough part of the programme. You are more likely to succeed if you address this hurdle with those that most want you and your family to flourish.