In 2016 Professor Jonathan Green presented at our family’s day. He is a Child & Adolescent Psychiatrist who had conducted some research to try to understand some of the particular problems in thinking, feeling and behaviour that occur in children with a number of different developmental disorders including the Rasopathies. This is a link to a summary of his presentation.

Behaviour FAQ

Can being ‘different’ cause ASD?
Can partial ASD (Autistic Spectrum Disorder) be explained by the way other children treat them as a result of their differences and by their medicalised experience? The simple answer would be no. ASD caused purely by the way a child is treated or by the way their peers treat them is not something that we see. ASD is a different kind of problem to that. Of course, the way a child is treated can exacerbate an underlying vulnerability and that can bring things out or make them worse but as a primary cause we don’t see that, no. Question asked and answered at our family’s day 2016
Could my son be autistic?

My son is six years old. If you’d asked me before if he had any traits of Autism, I’d have said no – he has lots of eye contact, you can tell if he’s sad or happy, has great emotional awareness but he’s totally fixated on cars and is very stubborn and I wondered if we should investigate this further, to make sure his medical practitioners and his school are aware that he might be on a spectrum of Autism.

You’re right that autism is a spectrum and a behavioural syndrome. It’s defined and assessed through understanding a pattern of child behaviour through development. We know that those patterns of behaviour tend to cooccur together over development and be quite persistent. Some children do have some bits of it and not others as it were but on the other hand there are also other reasons why a child might be interested in cars or might be struggling. So, you shouldn’t inevitably assume that one little bit of the collection of symptoms actually means it’s part of autism. Generally, in child behaviour, there are lots of different causes for a fairly limited range of behavioural presentations – there are lots of different causes so that’s where you need someone to make an assessment.

Question asked and answered at our family’s day 2016

How can I access psychiatric help?

What is the best way of getting the right resources for a medical referral for psychiatric help?

It is a sad fact at the moment that there aren’t the resources to give people proper psychiatric assessments throughout the country. It’s very patchy – there are some excellent services and there are some areas of the country where the services are very thin on the ground. The Government do accept this in principle and have allocated extra money however the resources devoted to child health and child mental health specifically are a very small proportion of general health resources. If you need support the most valuable thing you can have is a good GP or a good general paediatrician who can advocate for you and knows their way round the system.

Question asked and answered at our family’s day 2016

Is a sensory aversion stopping my child sitting on the toilet?

Is there any link between sensory processing and toileting with Noonans? We have a seven-year-old who just cannot stand bright light, loud noises, and he just will not sit on the toilet.

Bearing in mind there are different spectrums of behavioural issues across the entire population we are probably coming to the upper age limit where those behaviours are relatively normal in terms of development, but clearly they are not quite right because they have carried on into slightly older childhood. It may be worth considering other diagnoses in that element. There are other conditions where children are overly sensitive to noises and other senses.  It’s worth keeping an eye on; sometimes a general paediatric view, sometimes community paediatricians can be good a teasing out if those signs can be attributed to other diagnoses. 

Question asked and answered at our family’s day 2018

Is my grandchild imagining their symptoms?

Last year my 15-year-old grand-daughter had an episode of seizures for two weeks and after much testing it was said she was having ‘pseudo-seizures’ so basically, they were saying it was psychosomatic. Since then she hasn’t had any more seizures but this year, we’ve had a couple of more problems. One, eating and drinking – she couldn’t swallow water without bringing it up. Having had many tests, again it was psychosomatic – there was nothing actually wrong with her. Then recently, about a week and a half ago, she had these awful stomach and leg pains, absolutely crying. Is this something that other people with Noonan Syndrome or family members have experienced? It seems to be about coping because although the symptoms are very real, the causes aren’t real?

There are quite a few psychological problems that sometimes occur in Noonan Syndrome. With any child who has symptoms that we can’t find an organic cause for, people might say they are psychosomatic. It’s very important to be aware that they could be a symptom of quite marked psychological distress for whatever reason, and if she’s had three episodes in a fairly short time then it might be worth getting a psychologist to see her. People need to remember that behaviour that’s perceived as bad or difficult is usually a symptom and with this type of illness, particularly as she’s had these three episodes, you just need to be confident there isn’t something underlying and distressing going on. The fact that there’s no organic cause for it and it’s been labelled as psychological doesn’t make it any less real. You have to bear in mind the impact it’s having on her and the people around her and psychology is a well-recognised area of medicine. We all have psychological issues on a spectrum so it’s learning how you can manage those things. What you need to be careful of is the fact that although she’s had three different areas that have been attributed to psychological issue you still need to be very sure that there wasn’t an organic cause for each of those in turn. We need to be careful that we’re not putting everything in the same basket as a psychological issue and failing to address something that does need treating. I think getting psychology input is something she has clearly demonstrated that she needs and you should try and push this with your GP or your local paediatric team. Clinical psychologists are available although waiting times are quite long.

Question asked and answered at our family’s day 2018

Is there a link between sensory issues and behaviour?

On social media, there’s a lot of discussion about sensory issues in children with Noonan’s. Is there any link to those sensory issues and behaviour and have there been any studies done on that?

What people usually mean by sensory issues are some atypicalities or unusualness in processing sensory information of all kinds – incoming visual, auditory or touch but also sensations from inside our own bodies, what we think of as proprioceptions. Children do vary on this and it is true that as part of the Autism spectrum complex, these kinds of sensory processing problems are often intrinsic to the difficulty. They also though occur outside autism as part of particular developmental difficulties. But they’re very real and they can be associated with behavioural difficulties for sure. The assessment of these is not as advanced as for some other areas of behaviour and development in the professional literature –

there’s not as much assessment and research work on this area. But I think it’s a growing one and yes often these things are related to behavioural difficulty and managing them can have really tremendous benefits on behaviour.

Question asked and answered at our family’s day 2016

What management is there for ASD/ ADHD?

My son has ASD/ADHD. Other than medication, what other routes are there?

This depends upon the age of your child and other circumstances. There are a range of psychological therapies for ASD. From early life really focusing on improving social communication, usually in a family or parent-child context is proving effective and has opened up some really interesting thinking about the flexibility of Autism symptoms. Psycho-social therapies are important including parent-child communication, and aiding social skills and social adaptation. The child can learn techniques and coping strategies and so-called social stories are very popular and are really quite effective. It is also important to consider the environment in relation to the child; the lives of these children can be made hugely better if the environment can be adapted round them and understands them. So, ways of managing and working out strategies for social situations when you find it difficult. For ADHD, it’s a slightly different picture, but environmental adaptation can be useful.

 Question asked and answered at our family’s day 2016

Who can support with ADHD?

Where should a family go for support for a child with Noonan Syndrome and ADHD who hadn’t had success going to CAMHS and a psychologist whose only suggestion was medication such as Ritalin which their cardiologist said her daughter couldn’t have with her heart defect.  

Obviously the specific answer depended on the specific cardiac manifestations that the child has. As a general rule it is true that medication like Ritalin can affect the heart – it can speed it up and it can sometimes cause abnormal heart rhythm. But one view is that it is a balance between how much the symptoms of ADHD are affecting the individual’s quality of life balanced against the possible risk of an abnormal heart rhythm with the medication.  What normally happens is that if medication is considered the right treatment for the ADHD, the treatment is started with very close cardiac monitoring – ECG and perhaps 24 hour tape – and in the majority of cases there aren’t complications. Of course it depends on the specific condition and it’s vital to know what the specific heart condition is but ADHD plus Noonan Syndrome should be a caution not a contra-indication when it came to medication. 

In terms of support, the family were going down the best route in that they had a psychologist involved and CAMHS but it was also important to get everyone to communicate well with each other which was a real key with behavioural issues. It isn’t easy but is the best approach.

Question asked and answered at our family’s day 2015