Neurodivergence

To Diagnose or Not To Diagnose (Pt. 1)…

To be, or not to be: that is the question:
Whether ’tis nobler in the mind to suffer
The slings and arrows of outrageous fortune,
Or to take arms against a sea of troubles,
And by opposing end them.
(W. Shakespeare, Hamlet, Act III Scene I)

That is the question…

Or when it comes to autism and other neurodivergent conditions…

To diagnose or Not to Diagnose?

The answer to this one may at first appear blindingly obvious…and in some circumstances it is.

Hear me now…IF YOU OR YOUR CHILD:

  • Require support in school setting
  • Need financial assistance such as DLA or a personal budget
  • Are not coping with the situation…experiencing mental health issues
  • Lack the skills to research and make informed choices for yourself.

Stop reading here and now. Contact your GP and school as well as local charities. Scream until someone will listen to you. And don’t stop screaming until you are in a better place. 

Now that that disclaimer is out of the way, let me talk about the series of events that has brought me to the point of even considering such a radical question…

It all began about a month ago at a home ed meeting. One of the little girls I know and adore had a meltdown. A TRUE meltdown…not a temper tantrum. The thing is that child does not have a diagnosis of anything.

Have you heard of ‘gay-dar’? Well, this Mama has ‘neuro-divergent-dar’. In fact, it was Little Red Riding Hoods similarities to PanKwake at that age which drew me to her. I always am drawn to these kids. I want to take them all home with me…love them and tell them they are perfect just as they are.

But I am also generally reluctant to say anything to parents…unless I know them VERY well. I am no doctor, ed psych or psychologist. No letters after my name to make me an ‘expert’. Yet anyway.

I had been feeling that way about Red for awhile. In fact, I believe she specifically has Pathological Demand Avoidance. They sub-type of autism that PanKwake has. And this time I gently and in an almost whisper leaned across the counter to her distressed Mum and whispered…Have you ever considered…

A flood burst. I remember that feeling with PanKwake’s nursery manager. Someone else…someone who is not her parent…sees what I see too. Even if it is not a diagnosis, it is validation. You are not crazy. Not seeing things that are not there. Your concerns are legitimate.

We talked that day. She went home and did the online pre-screening for PDA…with her partner. They talked about the situation and weighed up their options. Discussed diagnosis and last I heard they have not made a definite decision.

Then I read a friend’s blog. He is an adult, recently diagnosed with autism and ADHD. He also has a host of other mental health issues…the cost of living half of a lifetime being #neurodivergent and not knowing why you are different. His struggles are all too real. And the bias of being diagnosed later in life is a barrier to getting the support he so desperately needs.

In this blog, he talked about a friend of a friend. This friend like me could see signs of neurodivergence in his friend’s child. But they were not seeking a diagnosis. This bothered him so he sought my friend’s opinion. My friend’s response alarmed me…Report them to social services. What they are doing is child abuse.

Over time his view softened a bit from that stance, but nonetheless I was surprised at the visceral nature of his response.

I decided then to write a blog on the subject and saved this one with a few links. But as is so often the case with my blog, Fate was not finished with me.

I am taking a FutureLearn course in autism. When we got to the bit about co-morbidities, one of the ones that received a great of emphasis was ADHD (Attention Deficit Hyperactivity Disorder).

This was actually PanKwake’s first diagnosis (other than epilepsy) at age five or six. At the time, we decided not to medicate because 1) her seizures were not controlled and the possibility of drug interactions were real and 2) she was already home educated so it was not as significant an issue as all that.

Problem was that ADHD was not a perfect fit. It just did not add up. There was something else going on here. So over the next two and a half years, PanKwake endured dozens of appointments and psych evals. First, it was Sensory Processing Disorder (SPD). The glass slipper did not fit.

Then the doctor wanted a cognitive assessment because like many neurodivergent individuals PanKwake has what is called a ‘spikey profile’. In other words, her mental skills are not the same across the broad. For instance at six, she had an adults vocabulary but could not follow three-step instructions, i.e. receptive language delay. A test that should have taken two to three hours actually took six weeks of fighting, cajoling and bribing. Even then the results were inconclusive…and of course…SPIKEY.

With pushing from me this FINALLY resulted in a full ASD assessment…that we waited almost another year for.

That assessment was BRUTAL. On PanKwake and on me. Not only was I having to do everything I could I get my child to these appointments…and then to participate…but no parent wants to examine their child’s life looking only for the challenges. It took another six to eight weeks. Half a dozen appointments for her and as many or more for me. I left the CAMHS (Child and Adolescent Mental Health Services) crying after every single one.

Lining
One of the questions was about lining her toys up…

The worst was the ADOS assessment. PanKwake did not even manage to finish a third of the exercises before she climbed under the table and curled into a fetal ball…rocking. What did it? The suggestion that the Batman figure could be a veterinarian for the role play. When pushed to come out from under the table, she did. Exploding into the hallway, screaming and yelling for me.

I calmed her and the doctors treated me with the respect that all parents deserve…the expert on my child and their partner in this. They offered to continue the evaluation after she had calmed down. Or on another day. Then the doctor thought a moment and said...let us look at what we have on film. We’ll get back to you. She called two days later. They felt they had enough to make a diagnosis.

I had another appointment or two with them. Then they called me and her dad in for a meeting.

Autism…high-functioning.

That was it. We had the A-word.

But was it worth it? Did it make any real difference to PanKwake or me? We’ll continue that story…tomorrow.

 

 

 

 

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4 thoughts on “To Diagnose or Not To Diagnose (Pt. 1)…

  1. Hi Tara,
    Thank you for the honest opinion about what I said.
    If I were to reply to you autisticly, I would simply say “Of course you are surprised, you are not autistic and therefore can not compute the pain that we feel living in Your World.”

    Or how about this, and its just an idea thats come to me, I mean no offence.

    I am led to beleive that women have to deal with constantly changing hormonal levels during the period of a month. An example of how this effects a woman is that something which is easy to deal with at one point in the month, becomes difficult or impossible during another point.
    If this event occurs when one is with another woman, and the first woman expresses her difficulties due to “the time of the month”, and this is the assumption part I am risking making, the other woman will understand and be able to step in and help – no questions asked.
    If, however, the woman happens to be with a man, I would first imagine that she might not risk saying anything, or if she does the man might step in and help, yet with an incredulous air. After all, how could a man possible understand what its like living with this ever shifting hormonal level.
    Now lets take it one step further, this hyperthetical lady, for some reason, thinks she is a man, just like everyone does she interacts with. This means she might express this difficulty to a man, only to be greeted with an air of disbelieve – at best. This might means she gets the help she needs, however at some form of cost (sneer, roll of the eyes – that sort of thing).
    And here’s the doosie – why does she think she is a man? Because her parents said she was and so dressed and treated her as one her whole life, to the point that even though she beleives with all her heart she isn’t, she is forced to accept she must be, after all if she wasn’t why would her parents tell her she was and why would everyone she meets also think she is. Resulting in an internal conflict that could be so great it causes her to doubt and disbelieve just about everything she sees and has to do.

    And then lets add another person into the mix, someone whom can see what the parents are doing. Should they then report this, or just let it happen?

    As you, Tara, have read that document I have felt the need to create to justifiy who I am to the Court of English Law, as their Reasonable Allowance Team accept that I need a Reasonable Allowance made for me – then go and tell me what is and isn’t a Reasonable Allowance. How can they know? One can close ones eyes and get an understanding of what is and isn’t for a blind person, just as for a deaf person or someone in a wheelchair. However, how can one do the same for autism. It is for reasons such as these that the set of Protected Characteristics known as Autism required a separate law for their protection and acceptance. Even the differences between sexes doesn’t require that, its so understand at a basic level.

    1. Simon,

      I believe we are saying the exact same thing. That knowledge is the power…my question is whether some ‘expert’ with a formula and a set of ever changing criteria is the best purveyor of knowledge.

      Undoubtably there are times and situations whereby that is the only path. At present anyway. But is even that fair? To be forced to diagnose a different way of thinking, feeling and seeing the world. A different brain process. Like it is a disease. To treat it as one being the only way to get support?

      I would not ever advocate for individuals or parents to ignore an issue that is causing challenges…for THAT person.

      PanKwake is calling now. But I suppose the period analogy might have gone over me. For most of my life I would have had no more empathy than a man…as I never had any of those issues. Until I approached menopause….and only then did I get it…after 40 years of them.

      But that too makes my point…just how ‘expert’ are these experts? How reliable is any measure created by one group of people to measure something as intimate as thought processes about which they have no personal experience?

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