Wednesday, 30 November 2016

It's not only girls who can mask

Following on from the previous article regarding masking in children on the Autistic spectrum, this article is going to look at boys who mask.  These boys seem to fall into two distinct categories. The first group is those who understand the rules at school and appear to manage the structure of school very well, but who are often struggling socially and academically, and who keep ‘below the radar’ whilst at school.  

When teachers and other staff at school report that they are doing well socially and have lots of friends, sometimes they will need to look more closely at the quality of these friendships – is the young person on the periphery of the social group in the playground, looking for an opportunity to join in?  Do they go on 'play-dates' and more importantly, are they invited back for a second or third visit?  This can cause stress and anxiety because he will have no idea why this happens or what to do to fix it.

These young people also often have what psychologists refer to as a ‘spiky profile’ in terms of their IQ.  They may be exceptionally good verbally but have much poorer non-verbal skills. This may lead to them being poor at mathematics and/or poor at organising themselves. They may also have difficulties with auditory memory.  Basically, information goes in one ear and out the other without being fully processed, so the young person will not be able to follow an instruction given verbally.  This will more than likely mean that homework instructions will be forgotten.  If you then combine that with poor processing speed (another very common problem for young people with Autism) and the poor child will not even be able to copy information off the board or complete work in time.  It is hardly surprising that this apparently well behaved child becomes angry and stressed in the safety of his own home.  It is important that teaching staff (and parents) recognise that for some children on the spectrum it is not a case of ‘won’t do’ but ‘can’t do’.

The second group of boys who tend to mask their difficulties are those higher functioning boys who appear superficially sociable, but who often end up becoming the class clown or mixing with the wrong type of peers in order to fit in.  Going back a number of years now a well-known Psychiatrist, Digby Tantam, in his book Autism Spectrum Disorders through the lifespan, talked about an ‘Atypical Asperger’s’ profile.  These were young people, usually boys, where the key impairment is in the area of non-verbal interpretation. This leads to a lack of ability to empathise with the perspective of another person, and an inability to see the potential consequences and impact upon others of certain actions.  This can lead to social and behavioural difficulties and social vulnerability.  Atypical Asperger’s syndrome (as described by Digby Tantam) often co-exists with attention deficit hyperactivity disorder (ADHD), or attention deficit disorder (ADD). These boys will often fail at school, with many being excluded or becoming effectively marginalised from the education system by the age of fourteen.

Although they often manage to form a number of superficial friendships, they will struggle to maintain these, and often suffer from low self-esteem and poor identity.  This tends to encourage them to either become the class joker (in an attempt to ‘fit in’), or behave in an increasingly outrageous or anti-social manner.  At this point, they often become more aggressive - towards people and objects - and frequently they refuse to obey rules of any kind. This can lead to them mixing with other ‘troublemakers’. However, there continues to be a naivety about this group with them frequently getting caught or scapegoated.  

Quite often, when the police or other authority figures are called, these boys are the ones left standing there, looking around when all the others have run off.  They will often mimic the other boys (in terms of clothes, accent or expressions that appear to be ‘cool’). However, they very often get this wrong and, to their peers, they can appear odd or an easy target.

The overriding feature of these boys is likely to be, once again, anxiety.  Although obsessive special interests tend to be less common in this sub-group (often due to co-morbid ADHD), cognitive rigidity is still present and can manifest itself in the inability to see anyone else’s point of view or admit that they may be wrong.  In addition, very literal thinking, and a lack of ability to understand and process ambiguous language and metaphors, leads to frequent misunderstanding and this is often coupled with an inability to ‘move on’ from what they see as ‘injustice’.

I hope this week’s blog has shown that it is not just girls who mask and sometimes Autism in boys can be just as difficult to spot.

NEXT TIME - In the next article I will be discussing the strategies that schools can use to help manage and support the child with PDA in the school environment.

Wednesday, 9 November 2016

Children who ‘mask’ or ‘camouflage’ their Autism

Those who haven’t experienced the frustration of being misunderstood as the parent of a child with Autism can find it hard to believe that the perfectly behaved little girl (and it is usually little girls) who keeps her head down at school and tries really hard to comply and ‘fit in’ with the other children can suddenly change when she comes out of school.  Many parents report that they have barely got out of the school gates before the ‘meltdowns’ start.  Sometimes there is no apparent reason, at other times she may be able to verbalise that the teacher has been mean or that someone has refused to play with her.  For others it may be the realisation that very soon it will be homework time again and once again, they are not sure what they are supposed to do or how to go about it.

Girls in particular can be very good at ‘masking’ their worries and anxieties.  They will smile, laugh and joke with the other children, appear to be getting on with their school work and have lots of friends.  However, the strain of trying to keep this up all day can be huge.  Grown women who are Autistic have explained to me what it feels like.  ‘I walk into the room and feel like people are looking at me’.  ‘I have no idea what to say to people or what they expect from me’. ‘Everyone else seems to know what to do’.  These are adult women, who have had years to learn how to cope and appear ‘normal’ (whatever normal is!).  Imagine how much harder it must be for an eight, nine or ten year old.  Girls’ friendships become much more complex at this age.  What is said is not always what is meant, girls talk behind each other’s backs and make nasty and sarcastic remarks.  For a girl on the Autistic spectrum, this is unbelievably difficult to negotiate.

So many parents report not being believed or being accused of poor parenting when in fact they are trying their best for their children.  It can be difficult to even get an assessment.  Many diagnostic teams are hugely over-stretched and may be forced to rely heavily on reports from schools when reaching a decision to assess a child.  So what happens if the child masks and behaves perfectly at school?  How can parents persuade professionals that there is a genuine difficulty?  Some resort to videoing or recording their children on Smartphones.  I can see why this might be tempting and why parents might feel the need in some way to ‘prove’ that their child has difficulties.  However, imagine how it would feel to be this child?  She is already trying her best to fit in and probably already knows in her heart of hearts that she is ‘different’ to the other children.  Also whilst a parent is busy recording a ‘meltdown’, they are not emotionally or physically able to help their child.

What is actually needed is a far better understanding by teachers and health professionals about how Autism presents in girls and the issues of ‘masking’.  If this was more widespread and professionals were able to move away from the male (or more typical) presentation, parents would not feel this need to prove themselves.  On so many occasions it is suggested that rather than the child having difficulties, the problems lie with the parents or the term ‘attachment disorder’ is put into the mix.  Some of the parents I have worked with have even been accused of fabricating their child’s problems.  In all the years I have been working with children on the Spectrum, I can honestly say I have not come in contact with any parent who has deliberately ‘made up’ behavioural symptoms.  The majority are good, caring, exhausted parents who are trying their best to come up with strategies to help their children.  That is not to say that there are not sometimes other explanations for a child’s difficulties.  Family life is hard, things happen within families, people are stressed, modern-day parenting is not easy.  Going right back to the original work which was carried out by Mary Ainsworth looking at attachment, it was noted that only 70% of children have what is referred to as a ‘secure attachment’.  This means that 30% do not.  However, 30% of the population do not have the anxiety and behavioural challenges reported by parents of children on the Spectrum. 

Both education and health professionals may need to look again at the research into girls with autism and listen to their stories.  They may need to look beyond a superficial sociability and (apparently) good friendships.  There is certainly a need to look again at how and whether ‘gold standard’ assessment tools such as the ADOS (Autism Diagnostic Observation Schedule) work with girls (and boys) who have learned to ‘mask’ their difficulties.  The ADOS was never intended to be a one-off definitive assessment – it should be used in conjunction with other evidence gathered from a variety of sources.  The long term risks of not helping these children and young people are significant and real – many will go on to have relationship difficulties, problems holding down a job and significant mental health problems in adulthood.  PDA and less obvious forms of Autism are not a new phenomenon – we just need to get better at identifying them early.