We Won’t Treat your Child’s Mental Health Problems – ‘they are normal in autism’

Oh….. so that makes it ok then?

Of course not.  Yet it happens often and, it seems to me, with increasing frequency.

No one is born with an anxiety disorder.

It isn’t surprising that children with Autism are prone to mental health problems.  To start with schools are designed for neurotypical mini-adults.  They aren’t great, really, for neurotypical children.  It seems to me that if you are a child that has sensory processing issues, social communication difficulties and rigid thinking (no, it’s not of their choosing…) then they can perhaps be little better that a living hell for 6 hours a day.  And that is just school.  Managing every day life can also be difficult.  Many are exposed to levels of stress that they are unable to manage every day, and until this is addressed it is seems to me that a significant proportion may develop an anxiety related disorder.

It is recognised by NICE, in Clinical Guideline 170, that the condition alone lends itself to these children having a greater chance of a psychiatric condition:

“Around 70% of people with autism also meet diagnostic criteria for at least one other (often unrecognised) psychiatric disorder that further impairs psychosocial functioning, for example, attention deficit hyperactivity disorder (ADHD) or anxiety disorders” (page 6).

Amongst mental health practitioners I have a hunch that it is common knowledge that our ASD children have a much greater risk of developing an anxiety disorder.   In-fact nearly half of our children do just that:

“Upon review of these studies, researchers concluded that about 40% of children with ASD had at least one comorbid diagnosed anxiety disorder (van Steensel et al., 2011)”.

For now, I will skip past the fact that much of this is probably preventable (a subject for another time, maybe) and stick with this brief: that our children are sometimes / often actively denied treatment because they happen to also have ASD.

The same Amsterdam study (shared by academics worldwide, see link above) showed the prevalence of specific anxiety disorders in youth with ASD to be:

• Specific Phobia: 30%
• Obsessive-Compulsive Disorder: 17%
• Social Anxiety Disorder/Agoraphobia: 17%
• Generalized Anxiety Disorder: 15%
• Separation Anxiety Disorder: 9 %
• Panic Disorder: 2%

I wonder if this is an under representation of the facts?  I wonder if there are more that are “unknown and unmet need” because, of-course, to receive a diagnosis you actually need to be seen and assessed.  And if you are turned away because you have ASD then you won’t be, can’t be, fully assessed nor diagnosed. 

I don’t know if other groups of children are denied access to help in the same way.  I wonder if diabetic children are denied access to help for mental health conditions?

This apparently worrying situation reminds me of the ignorance that was around with regard to depression in the elderly, and those with cancer, many years ago when I was a young nurse.  “Of course he is depressed, he is lonely and old” “Of course she is depressed, she has cancer” was the prevailing attitude; mostly unsaid.  We now, quite rightly, see depression as a separate treatable condition and NOT an inevitable consequence to aging or chronic disease.

Treating depression in these groups of people, however, is generally straight forward and requires simply the application of existing knowledge skills and resources.  Whilst they seem to be dwindling, somewhat, they are in the mainstream.

Treating children with mental health conditions and ASD, however, is not mainstream.  To do this effectively the practitioner needs to have additional skills and knowledge (also recognised by NICE on page 9).  It is likely they will need additional time and that practitioners will need  to be more flexible in the delivery of their treatment.

Critically, the reason for the lack of treatment in the case of the elderly and chronically ill was largely ignorance.  I don’t believe that this is the case here.

I wonder if our children are being actively discriminated against as a form of rationing.  As an extremely poor way of managing waiting lists and meeting short term targets.  Are services that are under pressure screening out those with ASD so that they can more closely meet demand in the short term?

Of course we all know that in the long term this is not an effective strategy in any way.  It will end up costing society and our tax payers more.

If you know our story (see here if you wish to) will know that my son did have access to good mental health services.  The combination of his ASD and school related trauma led to him being admitted to a children psychiatric unit at age 9.  I am quite sure that if he had not had this specialist care, and that from our local CAMHS team, that he would never have recovered.  That he would never have re-entered education nor would he go on to live as an independent adult.

I hear all to often that overstretched CAMHS services are turning children away with clear signs of anxiety disorders because they have autism.  Their parents are told that these symptoms are normal for autism.

I’ll say it again.  No one is born with an anxiety disorder.

I hear of three main types of presentation that are turned away.

• Firstly there are children who have consistent high levels of distress because their autism needs are neither understood nor met and these are a subject of another blog ‘nobody’s problem‘.
• Secondly there are children with very high levels of arousal and anxiety that is pervasive – that impacts on their life for most of their day, every day.
• Finally I also hear of children where this has gone on to manifest itself in phobia’s, OCD and dissociative states.

I believe that if the children in these latter two groups did not have autism they would receive treatment from CAMHS.  Absolutely they would.  They may have to wait a stupid length of time but they wouldn’t be turned away.  Children with autism are.

They shouldn’t be turned away.  NICE guideline 170 also says this:

“The following recommendations have been identified as priorities for implementation.  Access to health and social care services:

Ensure that all children and young people with autism have full access to health and social care services, including mental health services, regardless of their intellectual ability or any coexisting diagnosis.“

It feels to me as though as services are becoming more and more scarce, our children, who clinicians without specialist knowledge find difficult to understand and treat, are being excluded from services through the development of discriminatory criteria.

It is not clear to me whether these criteria are written as policies or are developed through the emergence of urban myths that are perpetuated by CAMHS, GPs, parents and schools to the point where everyone believes that they are real.

What I do know is that they need to be challenged each and every time and by all of us.  It is not OK.  It is not necessary.  It is discriminatory.  It is against NICE guidance and we all need to stop talking about it as though it is a fact that cannot be avoided.

If I were to be asked what should be done, then I would give this advice to parents and those advocating for individual children.  I would recommend that you:

• ask for the service to write to you clearly stating that children with (use your example, for example ‘severe anxiety that is impacting on every aspect of her life and leading to the emergence of phobias’) will not be treated because she has and autism spectrum condition and,
• ask for a copy of the policy that describes which groups of children are denied access to the Children’s Mental Health service.

Copy it to senior staff including the Chief Executive of the Trust.

One final thing.  It is very likely that the clinicians working ‘at ground level’ hate this just as much as you.  As a cancer nurse I have been in a position where I could have made a difference to families, but was not ‘allowed’ to.  Trust me it is crippling.  I was able to move into a position where I could make a change but to do that I needed to give up delivering clinical care.  It is very hard to change the system as a clinician alone, but if parents write calm articulate letters pointing out the obvious discrimination and send them to those who can lead the change, then together, slowly, we may be able to make a difference.  I hope so.

Just a thought – I know that many of you reading this will have stories and examples that demonstrate the reality of this.  If you do, would you consider leaving examples of your stories below in the comments?  It would be great to collect lots of descriptions that can be seen by the masses to illustrate the living nightmare that many families experience.   Thank you, from Peter and Lily’s Mum.

If you want to hear more of my (more constructive) thoughts on the provision of Mental Health Services then click here and here.

For more about the help we would like to receive from CAMHS click here

If you have found this post helpful and you think others may too, please click one of the share buttons below

Like this blog?  To see more of our blog posts please click here

• Blog: Reflections
• Peter and Lily's Mum