It is fairly well established that many individuals with ASD will experience various mental health issues such as depression, anxiety, low self-esteem, eating disorders, phobias, self-harm and obsessive behaviours E.G. skin picking, hair pulling & obsessive spending to name but a few, at some time or another.
So how can we, as parents, try to support our children through what can be very emotionally upsetting times. I think that one of the most important things to take on-board is that, very often, these issues will be stemming from the underpinning ASD. Therefore, it is important to try to assist our children by offering an all round holistic approach that seeks to tackle the issue from several different angles rather than to try to deal with the resulting end issue only i.e. any resulting mental health issues.
Beginning the Process Starts with Formulating a Plan
If possible we need to try to reduce anxiety, provide a full and extensive programme of strategies, address sensory issues, promote self-esteem, assist them to develop self-awareness & coping strategies and most importantly, for us to fully understand the cognitive and sensory difficulties that may perpetuate many of these mental health issues. Because fully understanding this can help us to more accurately provide everything that it needed.
From a Personal Perspective
As my daughter enters her teenage years these issues are becoming more apparent. The challenges that faced us in previous years in the form of explosive behaviour is now under control but the difficulties faced by my child have not simply gone away because the violent meltdowns have subsided. The child that once exploded is now more prone to implode. She faces the same difficulties and challenges in life but those difficulties simply manifest in a different form. A form that does little to affect others but which greatly affects her.
Within the home she is absolutely fine and she, very gradually, began to be able to use her skills and knowledge of her condition to be able to cope extremely well in the outside world for short bursts at a time that we gradually managed to increase. However, once those bursts of exposure were increased to include school attendance, the wheels somewhat fell off.
In this instance it has been a case of going back to the drawing board, re-covering old ground that had helped her on previous occasions, fine tuning the support from the education provision because, during this initial stage, it needs to be at the maximum it can be and basically starting from scratch.
Getting to grips with why such high anxiety is constantly accompanying our children through life and may therefore manifest in mental health issues
The following video is, in my opinion, an absolute must to watch in order to further expand our understanding of why life is so difficult for many of our children. The more we can truly understand the easier it can become to provide them with the correct support, strategies and environment.
why anxiety affects everything from the perspective of a professional who is also on the spectrum. This is a presentation by Sarah Hendrick at the National Autistic Society’s ‘Autism and Education’ conference and it is brilliantly insightful.
Difficulties that can underpin PDA by an adult with PDA
Although our children present with the diagnostic profile of PDA it is important to remember that the same underlying difficulties may be present for all children on the spectrum. Therefore, I find it helpful to look at all resources as well as those that are PDA specific. Resources that are suitable for other children on the spectrum may still be equally valid for children with PDA, it is just that due to the extreme demand avoidance, that our children experience, that we may need to deliver any possible strategies and therapies in an alternative manner and this is where the PDA specific strategies are so invaluable.
Providing the correct environment
In order to try to provide our children the most appropriate social environment as possible it is of utmost importance that we are able to develop a framework of strategies to ensure that their anxieties are kept as low as possible. We can’t make the world change for them but we can ensure that they have a place in the world that is safe, predictable, demand free and within their control. Very often this place is called ‘home’ and can become the only place where they feel free to live without intolerable anxiety and to use as a refuge to recharge and recover when the outside world becomes too much to cope with. This previous post of mine signposts to lots of useful resources that should offer advice on how best to provide such an environment for our children Beginning your journey with PDA
Of course, we can’t keep our children wrapped in cotton wool forever but if they do have a safe place where they can be truly happy and as anxiety free as possible then it may enable them to develop a higher tolerance to the outside world when they do step out. It also allows us to become fully in tune with what is helpful and what is not helpful. This framework of strategies can then be expanded on and adopted to other social situations. For many children the most important place for these strategies to be taken into consideration, used and adapted is within education Requesting Support in School
Addressing Sensory Issues
Understanding & Addressing Sensory Issues is another fabulous presentation, delivered by Corrina Laurie at the National Autistic Society’s ‘Autism and Education’. It covers all of the sensory issues that may affect a child on the spectrum, what behaviours may indicate specific sensory issues and what strategies & interventions may prove helpful.
Improving Self Esteem & Self Acceptance
I think that it is so important for us to re-inforce to our children on a regular basis that they are loved and valued for who they are and that it is ok to be different. Being different does not mean that you are any less valued or deemed by others to be stupid just because there are certain aspects of life that don’t come as easy to you as it appears to come to others. These difficulties are the result of a neurological condition, a different wiring of the brain and need to be looked at from the same perspective as we would for any visible physical difficulty.
This of course, is not always easy with a child who may be impossible to talk to and difficult to reach. I sometimes find that just leaving little notes here and there, saying that ‘I Love You’ can do the trick. Other times less is more, as they say, and it can be a question of really stepping back but ensuring that they know that you are there when they are ready to talk. Eventually they may seek you out, the lines of communication may be re-established, even if only briefly, and you may be able to plant a few positive seeds which you can carefully water over the months to come.
These windows of opportunity for discussion can be rare and fleeting and so try to make the most of them when they do arrive. Some of our children may never approach us directly and so it is also important for us to be aware of the clues that they may subconsciously give us that now may be a good time for us to initiate some kind of interaction. Wanting to snuggle down and have a cuddle is always a bit of an indication for me.
I also try to re-iterate that in life nobody is good at everything and so it is important to be self accepting of the things that we struggle with and to accept help. In just the same way as we all do in areas that we are not strong in. To do so is not a sign of failure but a sign of strength. We need to draw confidence from the things that we are good at because everyone has fine qualities that they excel in. In short we need to help them to focus on the positives and encourage them to be willing to accept help in areas that cause difficulties leading to stress and anxiety. The positives of PDA
I often use analogies for the purposes of this in order to make the concept more tangible. E.G. if you saw a child in a wheelchair would you expect them to run around a race track each day at school or would you expect the school to provide them something different to do on these occasions because they simply cannot run around the racetrack. Of course the answer is that they wouldn’t expect the child to run around a racetrack to which I would explain, well it is the same for you and that is why you shouldn’t feel like a failure for simply being unable to cope with social experiences or to need to have different things to do during a school day than kids who aren’t affected by PDA.
I also explain that crippling mental health issues and difficulties navigating life can affect everyone from different walks of life and are not limited solely to those on the spectrum alone. The causes for such difficulties may be different but the end result can be the same for many. Therefore, having ASD may be what is perpetuating their issues but does it really make them so different from everyone else when so many of us are susceptible to the very same end results but simply from different underlying causes.
That being said, I fully accept that for those on the spectrum it is far more intense and lifelong but the point that I am trying to make to my child is that mental health issues can affect us all for the purpose of trying to enable her to become more self accepting of what she may deem to be failings in herself.
Self-awareness is also important because to know and understand more about yourself can be highly beneficial both for acceptance, developing your own coping skills and to know that there are others just like you, hence installing a sense of belonging. Ruth Fidler discusses this in the following link and also offers advice in how to best approach a child when we are beginning the process of helping them to understand how and why their interpretation of the world affects them The importance of developing self-awareness
The book ‘Can I Tell You About PDA’ and a couple of my daughter’s mini blog posts may also be helpful resources in helping other children better understand their condition and to promote a feeling of ‘I’m not the only one’ can I tell you about PDA & Mollie’s mini posts
It may also be helpful to share resources with our children, providing the demand avoidance permits them to engage of course, in order to assist with self awareness and coping strategies. I have found it helpful to use social stories in the form of video modelling. This way engagement appears to seem less direct and more accessible because everything is being viewed from the perspective of the third person rather than trying to teach in a two way situation.
Sending links to resources, articles or social stories that may help your child in a visual but non direct & non verbal way can also be helpful to promote engagement E.G. via facebook PM or text message. You may never find out if they have actually read or watched the resource forwarded but at least there is a chance that they may have done during a quiet moment.
Here is a fabulous blog post that I am about to PM to my daughter in order to assist her with not feeling alone and to assist her in being able to develop more strategies. Who better for her to relate to and to learn from than another person with PDA Insightful strategies developed by an adult with PDA
Developing the Confidence to Step Back Out into the World, for a Child that has become Socially Withdrawn
Isolation can be a big issue for many of our children and this may be highly beneficial in the short term, especially if early life has been deeply traumatic, in order for a child to recover from the onslaught of a world that hasn’t understood them. But, it is important as they mature to assist them to be able to deal with the outside world for longer period of time in small incremental steps. If isolation becomes a big issue the following post should help to offer some guidance on how to begin those small incremental steps social anxiety and isolation.
Hopefully, if you have been working on all of the suggestions in the previous sub-headings then the child’s confidence and self esteem may already have improved enough for this prospect to me more tolerable and easier to achieve. Also, being able to once again engage with the world outside their window can be a massive confidence booster in itself.
Although it should be noted that for some children they may be just as happy living in a more secluded environment because social contact may not be something that they necessarily need or crave. As with all things it is about knowing what your particular child will find most beneficial because one size rarely fits all.
There is a huge difference between a child who wants to engage but is stopped by crippling mental health issues and another child who may prefer to keep socialising at a bare minimum due to personal choice and preference. The unique character of the child is what will often determine the correct path for us to follow.
What I have found with PDA is that very often I have to teach in stealth mode and that my child will learn in stealth mode. I don’t ask and she doesn’t say, with regard to what she has or hasn’t watched that I may have forwarded to her, I can only hope that at some point something has been absorbed even if I never directly know for sure.
Hopefully by trying to deal with the underpinning issues, providing support & strategies and by helping them to develop strong self-esteem and self-awareness so that they can become more enabled to self manage we should be able to keep the resulting mental health issues as low as possible by dealing with them from the roots up rather than from the top down.