While much has been written about children and teens with neuro-diverse presentations, less often do we hear directly about the lived experience of this group of children and adolescents. At an age where their peers are usually able to interact with peer and teachers in appropriate ways, children with neuro developmental disorder may struggle with a range of increasingly complex demands of high school. For example, these demands may include pragmatic communication (appropriate verbal and non-verbal communication across social settings), monitoring their own behaviour and adapting responses, self-regulation of attention or emotion, or switching attention and re-engaging in high-distraction environments.
Neuro developmental disorders (NDD) are disabilities in the functioning of the brain that affect a child’s behaviour, memory or ability to learn, e.g. intellectual disability, dyslexia, attention deficit hyperactivity disorder (ADHD), learning deficits and autism.
Often the unenviable position these young people find themselves in has them stuck between the incompatibility of their symptoms, and their capacity to function effectively, especially within education settings. Additionally, even when families have accessed the recommended treatments for core symptoms, many impairments can’t be corrected with psychotherapy, due to the fact that NDD are not caused by problematic thinking, but rather gaps in thinking and a lack of thought that’s associated with distractibility or communication difficulties. Management of symptoms therefore includes the successful engineering of the environment while at the same time identifying and teaching lagging skills. At an age when adolescents can be reluctant to share their true feelings about themselves, this teen (whose identity has been protected) shares his own unique perspective on what a neuro developmental disorder is like for him:
Interviewer: What do you find hard about growing up with a NDD?
Teen: I think it is hard to keep everyone happy, there are so many expectations. There are times at school when it is really hard to keep things together and keep everyone happy, and you can’t wait to go home, then sometimes when you do get home, your parents are angry with you. Sometimes you just don’t have the ability or the words to explain things.
Interviewer: So you find expectations one of the hardest things?
Teen: Yes, in fact it’s pretty impossible to meet them. I think that parents and teachers expect me to be like I am on my best days, but I can’t keep it up. I have to apologise when I say and do wrong things and sometimes I get stressed about trying to keep things together. When I am in trouble at school and in trouble at home I get really upset with myself and think less of myself. It’s really hard not to make mistakes, but I am trying not to get instantly angry and retaliate, but rather apologise,
but that is really hard to do! Not making impulsive decisions or behaving impulsively is hard when you get distracted and start thinking about other things.
Interviewer: How do you cope with difficulties you face?
Teen: Something I have learned to do is to be humble and try to use empathy, and not to argue. But not too humble because I am a person too. I also have to work out how to solve my problems, because a lot of the time, the same problem will keep happening to me. I need help to stop making the same mistakes. I can be different at a friend’s place and different at home. I have noticed I usually learn when I make mistakes, sometimes I keep making them!
Interviewer: When is your NDD the worst?
Teen: The absolute worst is when I feel stressed. I am always stressed because I do things that are impulsive and I constantly have this on my mind, and that makes me more stressed. I also forget to smile and look at people, and then they think I am grumpy or angry. I have to remember to use my communication skills and look like I am interested, or teachers and parents think I hate being there.
Interviewer: What is good about your NDD?
Teen: Ummm, nothing?! Nah, well sometimes I can think really clearly and write my assignment very quickly, but only when there are no distractions. I am also really good at thinking quickly. If I can listen and pay attention, I can be fast at my work. I find it hard to read, but when I find a book I love, I read it all in one go! I am also really good in some of my interest areas like gaming and music.
If you have an adolescent who would benefit from assistance to manage a NDD, has he/she got a safe space to be supported and to grow? Why not seek help from the team at the Centre For Effective Living?