The difficulties of managing ASD/PDA alongside additional comorbid conditions

Following on from my previous blog about ‘How to manage PDA’, I thought it useful to share the flip side, and the difficulties of managing ASD/PDA alongside other complex conditions.

Once you have got your head around PDA, the concept of PDA and then in turn the management strategies best to use, it all makes much more sense! However, when you have a child with comorbid conditions, there are a whole host of additional challenges.

My daughter was diagnosed with ‘Autism with features consistent with Pathological Demand Avoidance’ (see ‘diagnosis journey – continued to date’) aged 7. Whilst these made absolute sense at the time, my gut feeling was that there was something else going on for her and sure enough, she was further diagnosed with OCD, ODD, Multiple Anxiety Disorder (Social, Generalised and Separation) and Depression/Mood Dysregulation, aged 9.

The biggest challenge for me, following her additional diagnoses, was how on earth am I expected to know what to do, how to unpick or how to manage any given situation?

Was this particular behaviour due to ASD? Or PDA? Or OCD? Or ODD? Or Multiple Anxiety Disorder? Or Depression/Mood Dysregulation? This did, and still does, blow my mind!

I was once told by professionals, from memory this was the Social Worker, that I ‘shouldn’t pay too much attention to the individual diagnoses’ and that I should ‘focus on my daughter as a whole’.

Okay, I thought, well that’s fair enough and easy for you to say but having learnt the hard way on how different the management strategies are, for example, between ASD and PDA, I NEEDED to know how to manage everything else.

So let’s have a go at breaking them down…..

What the text books say about managing OCD

Whilst writing this, it has led me to research OCD, something that I admit I hadn’t done so much of until now. In my experience, it is quite easy to get bogged down with the day-to-day management, often fire-fighting, and ‘research’ goes out of the window!

This has actually been really enlightening and has given me a clearer insight into how OCD affects my daughter (something for a future blog). That said, it is also mind boggling just how complex OCD actually is!

So, the best management advice I found was on:

https://childmind.org/article/kids-and-ocd-the-parents-role-in-treatment/

Here it talks about the importance of parents not ‘accommodating’ their child’s OCD. Meaning, whilst we have all good intentions and protect our children from things they fear, it is actually counter-productive, as in fact we are feeding into their anxieties.

Having read this, I have realised that I am guilty of ‘accommodating’. Or am I if I am implementing PDA strategies, where one of the key points is to ‘reduce anxieties’?!

The key points for managing a child with OCD, as recommended by Childmind are:

What to expect from the professionals:

  • Talking therapy (CBT) and medication

What you can do as a parent:

  • Naming the child’s OCD’ is one way to reduce the stigma associated with it, and makes the child feel like the anxiety is not who he/she is. For example, a child may name his/her OCD ‘The Bully’ or ‘The Witch’ – by doing this the child is also not being defined by their OCD
  • Building Coping Skills’. Through treatment, parents learn new ways to respond when their children get “stuck” and how to encourage their child to rely on coping skills or to “boss back” their anxiety, instead of relying on their parents to help them through it. The children eventually become much more independent, and the parents may start to realise that anxiety is no longer in charge of their families
  • Helping them to ‘face their fears’ – family members learn to help their children face their fears instead of avoiding them. Instead of comforting the child, it becomes the parent’s job to remind him/her of the skills he/she has developed in treatment and to use them in the moment

What the text books say about managing ODD

This extract is from:

https://psychcentral.com/blog/4-ways-to-manage-oppositional-defiant-disorder-in-children/

Here are four things you can do as a parent to effectively manage your child with Oppositional Defiant Disorder as recommended by Psychcentral, and these are:

  • Respond without anger: It’s important to respond to your ODD child without anger, try to be as calm and matter-of-fact as possible. Just acknowledge the behaviour, state it as you see it, explain how it will need to change and then remove yourself from all arguments. You really have to pick your battles and decide what’s most important to you and ultimately to your child
  • Be clear and consistent: The nature of oppositional defiant behaviour is to wear parents down so that they eventually give in. You need to be strong, clear and consistent in your follow through
  • Do not take things personally: Do not take your child’s behaviour personally. When your ODD child acts out, as hard as it might be, stay as neutral and objective as possible. You need to be clear and concise and not get pulled into a power struggle, it’s really not about you, it’s about your child and what he/she needs to learn. We as parents sometimes need to be great actors and actresses with our kids. The key is to keep practicing calm, consistent parenting and following through
  • Don’t be your child’s friend, be his/her parent: Remember, being a parent is not a personality contest. There are times when he/she won’t like you, he/she may even shout, “I hate you,” or call you foul names. But if you keep setting limits with your child and follow through by giving him/her consequences and holding him/her accountable, then ultimately you’re doing the best thing for your child

Psychcentral also add: ‘Believe me, I know from experience that it’s difficult to manage ODD behaviour. It takes work and support from partners, friends, and the school system; it requires all the important adults in a child’s life working together to help change the behaviour, but it can be done’.

What the text books say about managing Multiple Anxiety Disorder

This extract is from:

https://childmind.org/article/what-to-do-and-not-do-when-children-are-anxious/

When children are chronically anxious, even the most well-meaning parents can fall into a negative cycle and, not wanting a child to suffer, actually exacerbates the youngster’s anxiety. It happens when parents, anticipating a child’s fears, try to protect her from them. Here are pointers for helping children escape the cycle of anxiety:

  1. The goal isn’t to eliminate anxiety, but to help a child manage it. None of us wants to see a child unhappy, but the best way to help kids overcome their anxiety isn’t to try to remove stressors that trigger it. It’s to help them learn to tolerate their anxiety and function as well as they can, even when they’re anxious. And as a by-product of that, the anxiety will decrease or fall away over time
  2. Don’t avoid things just because they make a child anxious. Helping children avoid things they are afraid of will make them feel better in the short term, but it reinforces the anxiety over the long run. If a child in an uncomfortable situation gets upset, starts to cry, not to be manipulative, but just because that’s how he/she feels and his/her parents whisk him/her out of there, or remove the thing he/she’s afraid of, he/she’s learned that coping mechanism, and that cycle has the potential to repeat itself
  3. Express positive, but realistic expectations. You can’t promise a child that his/her fears are unrealistic, that he/she won’t fail a test, that he/she’’ll have fun ice skating, or that another child wont laugh at him/her during a ‘show & tell’. But you can express confidence that he/she’s going to be okay, he/she will be able to manage it, and that, as he/she faces his/her fears, the anxiety level will drop over time. This gives him/her confidence that your expectations are realistic, and that you’re not going to ask him/her to do something he/she can’t handle
  4. Respect his/her feelings, but don’t empower them. It’s important to understand that validation doesn’t always mean agreement. So if a child is terrified about going to the doctor because he/she’s due for a shot, you don’t want to belittle his/her fears, but you also don’t want to amplify them. You want to listen and be empathetic, help him/her understand what he/she’s anxious about, and encourage him/her to feel that he/she can face his/her fears. The message you want to send is, ‘I know you’re scared, and that’s okay, and I’m here, and I’m going to help you get through this’
  5. Don’t ask leading questions. Encourage your child to talk about his/her feelings, but try not to ask leading questions, ‘Are you anxious about the big test? Are you worried about the science fair?’ To avoid feeding the cycle of anxiety, just ask open ended questions: ‘how are you feeling about the science fair?
  6. Don’t reinforce the child’s fears. What you don’t want to do is be saying, with your tone of voice or body language: ‘maybe this is something that you should be afraid of’. Let’s say a child has had a negative experience with a dog. Next time he/she’s around a dog, you might be anxious about how he/she will respond, and you might unintentionally send a message that he/she should, indeed, be worried
  7. Encourage the child to tolerate her anxiety. Let your child know that you appreciate the work it takes to tolerate anxiety in order to do what he/she wants or needs to do. It’s really encouraging him/her to engage in life and to let the anxiety take its natural curve. We call it the ‘habituation curve’, it will drop over time as he/she continues to have contact with the stressor. It might not drop to zero, it might not drop as quickly as you would like, but that’s how we get over our fears
  8. Try to keep the anticipatory period short. When we’re afraid of something, the hardest time is really before we do it. So another rule of thumb for parents is to really try to eliminate or reduce the anticipatory period. If a child is nervous about going to a doctor’s appointment, you don’t want to launch into a discussion about it two hours before you go; that’s likely to get your child more keyed up. So just try to shorten that period to a minimum
  9. Think things through with the child. Sometimes it helps to talk through what would happen if a child’s fear came true, how would he/she handle it? A child who’s anxious about separating from his/her parents might worry about what would happen if they didn’t come to pick him/her up. So we talk about that. If you mom doesn’t come at the end of soccer practice, what would you do? ‘Well I would tell the coach my mom’s not here’ And what do you think the coach would do? ‘Well he would call my mom. Or he would wait with me’. A child who’s afraid that a stranger might be sent to pick her up can have a code word from his/her parent’s that anyone they sent would know. For some kids, having a plan can reduce the uncertainty in a healthy, effective way
  10. Try to model healthy ways of handling anxiety. There are multiple ways you can help kids handle anxiety by letting them see you cope with anxiety yourself. Kids are perceptive, and they’re going to take it in if you keep complaining on the phone to a friend that you can’t handle the stress or the anxiety. I’m not say to pretend that you don’t have stress and anxiety, but let kids hear or see you managing it calmly. Tolerating it, feeling good about getting through it

What the text books say about managing Depression

This extract is from:

https://childmind.org/article/treatment-for-depression/

What to expect from the professionals:

  • Talking therapy and anti-depressants

Treatment can really help children and adolescents struggling with depression, including several different kinds of therapy and medication that have all been proven to be effective. The kind of treatment recommended for your child will depend on his/her symptoms and preferences, and the expertise of his/her clinician. Many clinicians recommend that if a child is taking antidepressant medication then he/she should also be participating in therapy.

Cognitive Behavioural Therapy (CBT)

CBT is the gold standard therapy for treating children and adolescents with depression. CBT works by giving people skills to cope with symptoms like depressed mood and unhelpful thoughts (like “no one likes me” or “things will always be like this”). In CBT children and therapists actively collaborate to meet set goals, like catching those unhelpful thought patterns and improving problem-solving ability.

Mindfulness-based Cognitive Therapy (MBCT)

While its efficacy is still being measured in adolescents, Mindfulness-Based Cognitive Therapy is another treatment that has been shown to work for young adults and adults with depression.

MBCT works by combining Cognitive Behavioural Therapy (CBT) methods with Mindfulness. Mindfulness teaches people to be fully present in the moment and observe their thoughts and feelings without judgement. This can help them interrupt undesirable thought patterns that can maintain or lead to a depressive episode, like being self-critical or fixating on negative things in ways that are not constructive.

What management advice and support did I receive when my daughter was diagnosed with these conditions?

Well I received NONE of the above advice which I have just found having researched the internet!

From CAMHS:

The advice from the psychiatrist, or more to the point the question that I was repeatedly asked was, ‘what do you do to keep everyone safe?

I was also given their ‘Crisis’ number to call in an emergency. However, this really doesn’t help in the moment where you are dealing with a meltdown or you are preventing your child from self-harming or indeed managing a situation where your child wants to end their life.

From Children’s Services:

In the early stages of Children’s Services involvement, they bought in a ‘Specialist Behaviour Intervention’, which was a six session intervention by a supposedly Specialist in ASD. During her first visit, she witnessed it all! Great I thought, but sadly she had no real advice!

The Social Worker did kindly reassure me that I was ‘managing meltdowns appropriately’, however whilst that was lovely to hear, there was no practical advice on reducing these or indeed understanding these.

From our Specialist Independent School:

I was very excited recently when my daughter’s school bought in a ‘Specialist Behaviour Therapist’ to work with us, but sadly despite a really positive first meeting, due to ‘having to keep costs down’ I was informed that I wasn’t allowed to have direct contact with him! How is a Specialist Behaviour Therapist meant to work with a family without contact?

So, how do I manage?

If I am brutally honest, I have to just go with my gut instinct and react accordingly on what I am presented with in the moment. I have to think on my feet and try to establish what could be the cause/trigger of the negative behaviours whilst managing the actual behaviours. Preventing escalation wherever possible but often fire-fighting.

In truth, I’m just winging it really!

Questions I have as a parent of a child with comorbid conditions

Looking at the online advice above for managing individual conditions, I have two main points to raise, over and above just quickly highlighting that I have been previously informed that CBT is not conducive for a child with an ASD diagnosis.

What I am struggling to get my head around and my key questions to any professional that may have the answers, are:

  • How do I avoid ‘accommodating’ my daughter’s OCD and Multiple Anxiety Disorder at the same time as trying to reduce anxieties associated with PDA?
  • How do I remain ‘clear and consistent’, which is recommended to manage ODD, without having the necessary flexibility required to help manage PDA?

Getting support and advice to help us support and manage our children with ASD/PDA is hard enough, if not non-existent! However, I am sure you can appreciate that this is an even greater challenge when you have a child with complex needs and multiple diagnoses which have conflicting management strategies!

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