When Stigma Impacts You & Your Neurodiverse Child

by | Jun 3, 2019 | ADHD, Autism, Carers | 0 comments

Challenges for neurodiverse kids manifest across academic, social, and psychological areas of life and frequently co-occur with other physical and mental disorders. Neurodevelopmental disorders (NDD) as outlined in the DSM-5, include attention deficit hyperactivity disorder (ADHD), autism spectrum disorder (ASD), communication disorders, intellectual developmental disorder, motor disorders and specific learning disorders (SLD).

Parenting a child with a neurodevelopmental disorder and additional learning needs can feel like being trapped in a relentless spin cycle while families around you are pressed and crease-free. While your child’s peers are turning homework in, pursuing extracurricular interests and reading for pleasure, you may be simultaneously trying to get your child to put their undies on, preempt a potential meltdown with snack, or revise social skills ahead of the next activity. You may even feel like you yourself are somehow responsible at school pick up when the teacher beckons you over for (yet another) debrief of things that happened while you were not there. Yet what really adds to the burden of parenting a neuro-diverse child is the accumulation of messages parents receive when their child doesn’t meet expectations.

Cultural messages frequently scrutinise parents for being both under-involved or over-involved, lawnmowers, bonsais, helicopters or concierge parents, giving the impression that parents can be a major source of harm and are in fact responsible for a child’s growth and development. Parents of children with NDD have been criticised for seeking diagnoses or not seeking a diagnosis, medicating or not medicating, advocating or failing to advocate, informing educators or not informing educators, their role made more difficult within changing social perceptions of successful parenting.

Additionally, these parents face community stigma, which is now understood to be broader in scope than racism and discrimination and can be thought of as the public acceptance of discrediting stereotypes. Parents of children with NDD experience stigma in a variety of ways, such as in the form of critical evaluation, such as, “Have you tried essential oils?”, “If it
were my child, I’d make sure it never happened again”, and “She just needs firmer boundaries”. They also experience stigma each time there is an attribution made about their child’s character, such as, “He can’t be bothered”, “She refused to listen”, or “He chose to ignore my instruction”. The underlying message blames the child and blames the parents.

So how can parents find their way in contexts where they are held accountable for their neurodiverse child? Well, what is important to remember is that your child will do well where she is able to. If she is unable to, there will be some problems to solve and some lagging skills to address, and she is not deeply flawed in her character! This is best done collaboratively with your child, as opposed to anxiety fuelled ultimatums that may send the message to your child that they are not enough. Although it is sometimes necessary to address and change specific maladaptive behaviours, change is best undertaken together, so your child has every chance to build their own capacity to problem-solve or self-regulate by coming up with solutions. You might just be surprised by what she comes up with! Fundamentally, maintaining a warm and loving relationship without the pressure of your child having to ‘improve’, will let your child know that home is a safe haven where her emotional needs will be met.

Finally, it is important to recognise that there is still a clear gap in knowledge regarding NDD across our communities, which are often ill-equipped to set expectations for the growth and development of neuro-diverse children. Allowing stigma to set the agenda for our children would be to water a garden of toxic weeds. If you find yourself exposed to regular negative feedback, social exclusion or feeling misunderstood, it may be time to gently re-educate or remove yourself and your child from harms-way. We all need to find our village in life, and allies of children with NDD and their parents are usually flexible, open-minded, and less concerned about your ability to meet socio-cultural expectations.

If you are interested in reading more about lagging skills and unsolved problems for children with NDD’s, check out the work of Dr Ross Greene here: https://www.livesinthebalance.org 

If you feel the issues you are facing are overwhelming and you don’t know where to begin, why not reach out to our team at The Centre For Effective Living?