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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.

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.