Monday, 15 February 2016

Autism, Mums, Assessment of Parenting Skills

I am an autism professional, invited to lecture at the Royal College of Psychiatrists on the subject of autism.  I train social workers and healthcare professionals across the country.  I have worked with autism for more than 20 years, and lived with it and alongside it for a lifetime. 

Many of the best parents I know are autistic, and parent autistic children.  Their ability to cope with almost zero support is extraordinary.  And often leads to huge stress, of course.  We really do need good understanding of autism.  And good support services around autistic families to enable them to thrive.
A reasonable number of autistic mums have been misunderstood by assessors, evaluating their parenting skills.

Some have had to fight very hard indeed to keep their children, as a result.

In this post, I am going to talk a little about autism in women.  It is an informal 'starter' for professionals. 

We know from the work done by my colleague, Professor Simon Baron Cohen, that for every three adults diagnosed with autism, another two remain undiagnosed.   We also know that autism in adult women is rarely diagnosed.  Women tend to be misdiagnosed with other things, because of the lack of knowledge.  Many diagnostic professionals are as yet untrained in how to diagnose females of any age.  Women can present differently to men.  Generalising:  We tend to have 'female' hobbies and fascinations, not an interest in trains and timetables.  We tend to manage a friendship or two, and a relationship, and a family.  We tend to be more able to study the social behaviour of others and mimic it for a short time.  We are every bit as autistic, arguably.  But many diagnostic professionals tended to assume they were looking at schizophrenia, personality disorders, depression, anxiety, eating disorders or just plain 'manipulative behaviour'.   Autistic people  arguably cannot be manipulative.  It requires a depth of thought about the mindset of others that we do not have.

Unfortunately, for example, this means that we have quite a few autistic women who have become parents and do not know that they are autistic.  They may not know that their children may be autistic.  There is a genetic link in autism that means it often does carry through generations.

An autistic parent will parent an autistic child differently.  They will not make a lot of eye contact with their autistic child, or with visiting professionals.  They may not cope with sensory environments such as assessments in centres with fluorescent lighting.  This can be seen as avoiding or hiding something.   They may talk in a way that seems too loud, too intense.  This can be seen as confrontational.  They may lose language skills when under pressure. This can be seen as avoiding or refusing.   If their autistic child falls over, they may not rush to pick them up.  They won't offer huge eye contact and lots of soothing conversation to the child.  In reality, they are doing exactly the right thing for an autistic child; avoiding sudden sensory and social overload for that child.  Both child and parent may not use typical face expressions or body language to convey emotion.  Both may be misunderstood as angry or afraid when they are not.  Or vice versa.  Both may struggle to know how they are feeling when asked (look up 'alexithymia and autism').  Just some examples of difference.

Parenting an autistic child requires autism skills.  Such children may grow up to be amazing specialists, very social-justice-oriented, very fair, very honest.  And very, very passionate about their specialisms.  These are good things for society.  And an autistic parent will value those skills and enable them.   Autistic parents are not broken versions of 'real parents'.  Certainly some will need help to interpret and parent their non-autistic children.  The same as non-autistic parents need help to interpret and parent their autistic children.

Very often, such undiagnosed autistic parents end up in more and more difficulties.  The more pressure that is put on them to parent an autistic child in 'alien' ways, often the worse it gets for them, and for the child.

If you are assessing a family, be aware of the possibility that you may be with an undiagnosed autistic female.  Look for that lack of eye contact, desperation to know what will happen and when...repetition of information...desperate need to clarify something over and over...extreme anxiety in new, unfamiliar surroundings under fluorescent lighting.   Instead of thinking it's a mental health condition, or very poor parenting skills, think 'could this be autism?'.   Autism isn't a mental health condition of any kind.  It is a permanently different brain design, from birth.

With an autistic child, their behaviour can resemble that of a child experiencing trauma of some kind.  They may be extremely avoidant, extremely distressed or non-communicative (with strangers, in a strange situation, under fluorescent lighting).  No wonder, since such situations really do overload brain wiring until it literally overheats and causes pain.   Autistic children can have a lot of injuries, because they often cannot see what is around them very clearly.  Some have little or no sense of pain, and may not realise they have injured themselves.  My own son, for example, played national level rugby with a broken foot, without even realising it was broken.  Even the medical teams missed it, because when they said, "Does it hurt?", he told them it didn't.  Well, it didn't.  Different pain responses.  And yet, a tiny injury hurts immensely.  Be aware of this.

Lots to think about.  Of course, where there is genuine risk to a child, one must always act appropriately.  The question is how to assess whether that risk is genuine, or is perceived because of misunderstanding of autism needs.

Take good advice from an autism professional.   Get good training on all of this.  This is only a summary for thinking purposes.  But we really do need to 'think autism', before assuming a child is in danger from 'poor parenting'.