An Open Letter

We relocated from England to Scotland two years ago and arrived with formal diagnoses in place.  Our transfer of support should have gone smoothly yet we have found ourselves in the position of having to justify those diagnoses and fighting for acceptance.

It wasn’t easy to get Little Miss H diagnosed, everything took time, it was a slow process with long waiting lists but after presenting enough evidence and after assessment over a prolonged period the professionals found that she met the criteria for an ASD diagnosis.  Our family are in no doubt that it is the right diagnosis given her father is also diagnosed and we received it as a welcome relief.  It enabled us to access supports for her that otherwise wouldn’t have been available to us and goodness knows I was on my last legs doing it all myself – I needed help.  More than that I needed recognition of our reality.  I needed someone to ‘see’ us.  This was all at the same time that Tiny Miss H was under investigation with ultimately being diagnosed with a very rare chromosome deletion.

Regarding my Tiny Miss and her diagnosis I was told by various professionals at the time; “Good catch Mum”, “Wow, they always say the Mother knows”, “your instinct was spot on”, “she’s very lucky to have been diagnosed so young, it’s a chance to make a positive impact on her prognosis”, “not many would have caught this so young, well done” and so on.

I even have a hand written letter from one of our most significant professionals involved with us, who on hearing we were moving to Scotland wrote to tell me what a pleasure it had been to work with us, to have been part of Tiny Miss H’s progress and she wrote about me “you are the PERFECT therapy mummy”.

We had very positive relationships with mutual respect and I was reluctant about losing that when we moved.  I was reassured by many that I had established good relationships once and I’d do it again with great referrals up to their counterparts and it would be much easier this time round.

Imagine then soon after moving up here to be falsely accused by social work of emotionally abusing my children by having them diagnosed, of ‘heightening’ their needs and making up their conditions.

To be accused in essence of Munchausen syndrome by proxy – they didn’t say as much in those words but the implication was clear.

It has been 18 months of hell.

It’s been a hard fight to clear my name but we are now gradually coming through the other side with the accusations now withdrawn, vague apologies given for our distress but a general lack of support to help us recover.  The shock, hurt, damage to my self-esteem and erosion of my trust is still an ongoing issue as a result.

We have the advantage of living on the border of two healthcare areas and we were accessing services for the children in area A, since the debacle of the accusations we have now transferred over to area B to have a clean slate and a fresh start. A second ‘move’ (even though physically we remain in the same place) means tens more appointments and the whole rigmarole of meeting even more new professionals.  Exhausting but worth it for the clean slate.

At one of these appointments yesterday I was made aware of a report that I knew nothing about stating that a consultant who had met us for an hour, hadn’t seen much to support [Little Miss H’s] diagnosis.

This undermined the fresh start and all it did was cause confusion and raise questions from the new consultant which then led me to having to justify and explain and relive the nightmare.

Below is an open letter to the consultant who wrote that report, which I have written as a reaction to the above.

Dear Professional

I come to you with trust and an assumption that you will use your power wisely.

I trust that you will listen and that you will hear us.

I trust that you will respect us and appreciate our story.

I trust that you have experience in the subject we are speaking to you about and that you have faith in your colleagues.

I trust that you will afford me mutual respect and trust.

I understand that you spent a long time learning and training to become a doctor, I respect that fact.

I expect you to respect my intelligence, my experience, my intuition and my intent.

I expect to work with you, to be a team, to work together.

To behave one way to us and then write something else in a report to your colleagues that I have no knowledge or sight of is a betrayal of that trust. .

Your casual dismissal of your NHS colleagues’ diagnosis of my daughter is astonishing and quite frankly worrying.  You discredit them without taking time to question or investigate.  That by extension, in my eyes at least, discredits you.

My mind boggles at the arrogance of your reaction.  To immediately assume you are right rather than resolving to learn from this diagnosis, from us, from her.  Where is your enquiring mind, that is presumably needed for continual growth as a doctor?

It is not fair to put my child at risk of lesser service and treatment by casting doubt and confusion over what was an unambiguous diagnosis.  By casting a shadow of doubt you also serve to undermine me and my credibility in my role as her main advocate.

What makes you think that after an hour long appointment with me and my daughter you know her better than the team who diagnosed her over a period of two years?

That hour with you was not an in depth assessment, it was a surface level chat with me whilst my daughter tugged on my arm to leave until she was persuaded to sit, draw and colour in ‘nicely’.

You didn’t express any doubts to me or give me any opportunity to explain how her autism affects her.  Not once did you ask how the diagnosis was reached, if you couldn’t see it, not once did you give any indication that you disbelieved us, not once did you give me the opportunity to clarify for you the manifestations of her autism – you never asked.  This shows your lack of respect for me and for my daughter’s diagnosis.

Your callous disregard for my opinion, my experience and my expertise is insulting.

As a mother I KNOW MY CHILD.  That is all I should need to say, but if I need to justify myself my degree (Bsc(hons) in Psychology with child development being my area of specific interest) and my life experience which includes nannying and teaching children supplements my parental experience.

I have lived with autism, ADD and dyslexia in my husband for 11 years and I have experience of parenting an autistic child for 8 years.

I’d say in terms of both intensity and time this is at least equivalent to specialist training that you undergo to become a consultant.

I’m certainly not saying I could be a consultant but I am saying that I am an EXPERT in my child and my child’s condition.  Where your experience is broad, mine is specific.  But make no mistake it is no less valuable.

How arrogant of you to dismiss my daughter without even endeavouring to understand her diagnosis.  Every case of autism is unique and therefore an opportunity to learn.  How many girls on the spectrum have you dealt with in your career?  Regardless of the answer to that your level of expertise will not be more than mine in the case of my daughter, so at the very least the wealth of my experience is a valuable resource to be used rather than ignored.  We could have worked together for her benefit.  Instead my energy available to her is diluted by having to spend my time justifying myself and her diagnosis unnecessarily.

I can rationalise and justify why I know you are wrong, you cannot reasonably explain why you believe your colleagues who diagnosed my daughter and me to be wrong.

The average age for ASD diagnosis in girls is twelve.  The reason that early diagnosis is so hard in girls is that some, often in the high functioning section of the spectrum, mask, mimic and hide behind coping strategies.  They are chameleons in society.  They are masters at pulling the wool over your eyes.  They will only show you what they want you to see.  One often can’t tell that someone is autistic just by meeting them briefly.  IT IS A HIDDEN DISABILITY.  So from a medical stance the problems aren’t recognised but it doesn’t mean they aren’t there.   We come to you for help.

My daughter’s behaviour in appointments is often unrecognisable to me. She often behaves like a different person to the little girl we live with – she can be a Jekyll and Hyde.  She performs a role – the part is that of a little girl behaving how she thinks strangers expect her to.  She’s not relaxed at all.  It’s exhausting for her.  We spend a long time preparing her for appointments and it pays off.  She usually is distractable enough for me to focus all my attention on imparting a huge amount of information in a very short space of time.

She also behaves differently at school.  My husband (also diagnosed ASD) behaves differently at work than at home.  This is not unusual and is a very key part of high functioning ASD.  Having said that it is also a matter of interpretation.  My daughter’s manifestation of ASD is often visible if you understand what to look for.

Just because on meeting my daughter you can’t see her autism doesn’t mean it isn’t there.  It doesn’t mean she doesn’t need support.  It doesn’t mean I am making it up and it doesn’t mean you should discredit and dismiss us.

The very fact that my daughter was diagnosed at age five means firstly that medical professionals, trained in and with experience in the field of autism found her to be meeting the criteria for a diagnosis and secondly it’s meant that we have been able to access support.

This diagnosis has enabled EARLY INTERVENTION which in turn has meant that we have helped my daughter with coping strategies, we have worked on social skills and we have in place support, interventions and strategies that make her life easier for her to manage.

Add this support to a predisposition to mask and mimic means that meeting my daughter briefly probably means you won’t be able to tell she’s autistic and that’s OK.  It means it’s working.  It means our hard work to support her is paying off and her hard work is all worthwhile and it means that early intervention is the key.

If it is hard to tell that my high functioning daughter is on the spectrum then I take that as a compliment as a lot of blood, bruises (literal and metaphorical), sweat, tears and hard work goes in to that outcome.

It can take as long as eighteen months for my daughter to ‘let you in’ if ever, in terms of showing her true self to you.  Many people, even some of our own extended family haven’t seen some of the true issues that we as a family have to deal with due to my daughter’s autism.

Now she is eight she can vocalise that she behaves in a certain way at home because it is her ‘safe space’ and she ‘relaxes’.  This states to me that life for her outside home doesn’t feel safe for her and that it is hard work and not relaxing for her.  We all have a duty to understand that and respect that.

Being diagnosed at five is unusual and significantly younger than the average age of diagnosis.

The fact it is unusual must therefore mean that there cannot be that many doctors out there with extensive experience of such young girls on the spectrum.

Rather than suggesting ‘you haven’t seen much to support her diagnosis’ – how about resolving to learn from her?  I would suggest a better phrase would be “I don’t have enough experience to recognise it in her” then add it to your bank of experience.  Act with some humility and learn from it.  YOU DO NOT KNOW IT ALL.  After all if you’ve met one person with autism, you’ve met one person with autism.

If she had blood tests showing something you’d accept them without question.  Why not accept behaviours, traits and struggles as equally telling.

It is your duty to let the evidence guide you – but if you don’t listen to the evidence it can’t.

As a (loving, kind, resourceful, credible, rational, intelligent, eloquent, instinctive and intuitive) parent I know my children.  Life with them can be tough.  Please do not make it harder.

Thank you.

From a disappointed Mummy.

Advertisements

Author: H2Au: the stuff of our life

H2Au: the stuff of our life. A personal story of our family's life with Autism, a rare chromosome disorder and auto immune disease.