Over the past couple of days, I talked from the personal, subjective view of our experience diagnosing PanKwake’s autism. Today, I want to get a tiny bit objective. I say tiny bit because while this will be one of those check list blogs that everyone likes it is in no way scientific or as my beloved PanKwake would say…logical.
I am sure that others would add things to the list or perhaps even take some away. But it is the basics that my experience has taught me to consider when thinking about To Diagnose or Not to Diagnose…
What is it exactly that you want or need from a diagnosis?
If your child is in school and not coping well, would a diagnosis make a difference? Would he receive the support he needs because of a diagnosis? Of course your first reaction is Yes. But have you looked at how other children with a diagnosis in that school are treated? I hate to point out the obvious but often even then it is about what makes life easier for the teacher, other students and school…not the child.
Do you need support or financial assistance? As our story showed…having a diagnosis does not automatically bring the cavalry rushing to your rescue. It can take months…more like years to get any help. And even then it is likely to be the help that others can ‘afford’ to provide you…even if it is not what you need. Or even if it is inappropriate, useless or even harmful.
Do you seek a better understanding for your child or yourself? Now this one is in my mind the most significant reason to seek a diagnosis. If you truly NEED some ‘expert’ to give you a label so that you can understand and accept your child…then that is worth it. Likewise if your child NEEDS to understand herself better…that is even more important. But even then…is diagnosis the only way to achieve this?
As for partners, family, neighbors or that rude woman on the street…I hate to tell you but even the A-word does not hold magic to change the hearts of man. One of the myths is that autistic people lack empathy. No, neurotypical ones do.
For my American readers, yes, the financial costs can be in the thousands for an autism diagnosis.
But even with socialized medicine like we have in the UK, dollars and pounds are not the only costs incurred with the diagnosis process.
The process itself takes a very high toll emotionally. First of all, the wait. It is usually around two years…yes, years. On someone’s waiting list…while you continue to struggle…while your child experiences more and more stress, bullying and failure…while your marriage falls apart….or your health declines.
And you are considered one of the lucky ones to get this far. Many never make it past the initial pre-screenings as schools and GPs blame parenting style or home life, i.e. YOU, for your child’s struggles. Because then they have no duty of care.
Then the big day arrives and you receive your appointment day. Relief! Until you look at the packet that came with it. At least two and likely as many as ten pages of questionnaires for you and/or teachers to fill-in. And you know that EVERYTHING rides on your answers.
But honestly…who remembers if their child pointed and grunted or made eye contact as a baby/toddler? That was five or more years ago. Your life has more pressing issues at the moment. But still you struggle to get the ‘right’ answer so that your child can get the help that she needs.
You take your paperwork and arrive…early. Unless of course just going caused a major MELTDOWN at your house…a real possibility. I mean who really wants to be put under a microscope and dissected…alive?
And yes, that is really what it is like…for your child…and you.
Not just for one meeting either. No, expect between four and eight or more appointments with different people. Even once the ball is rolling it takes weeks or months. In PanKwake’s case, our first appointment was early August and the diagnosis was mid-October. But even then appointments dragged into December as they detailed her speech, language and communication challenges through another half a dozen appointments.
After all of THAT…I have managed to get PanKwake to TWO doctor’s appointments…in the last almost four year. Once was with the help of her brilliant carer in London…and about £50 worth of prizes. (Yes, I bribed my child. I do it regularly. And don’t lecture me…unless you work for free.) And the other was her intake with the GP here in Swansea…and I had to physically carry her twice…once down stairs to her buggy and once into the doctor’s office with help from nice people in the waiting room. These days I do NOT even attempt to get her to a doctor. We have an epilepsy nurse that sees her at the house…and she barely tolerates that.
That is HOW traumatic the experience was for my autistic child.
Honestly, it was not good for mental health either. The whole process is about itemizing every single ‘deficit’ even turning strengths into challenges. As a parent, you sit there with this ‘expert’ staring you down and judging you and your child. You are asked to give examples…relive some of the toughest moments of your child’s life. It is like stripping naked in front of a stranger…doctor or not.
We had some very compassionate people at the CAMHS…but still the process itself was de-humanizing, degrading and demoralizing. You need to know that going in.
I don’t mean to beat a dead dog here, folks. But I do need to knock some sense into some people.
One of the things that PanKwake loves most about her Kiddie Zoom Action Cam is that she can distort photos to make them…well funny…
Sometimes I think that we as parents in particular can do the same thing…distort the outcome of the diagnosis process.
Have you ever read a book or seen a movie where you sat on the edge of your seat, your heart and mind engaged with the characters or storyline, you could not put it down as the tension mounted higher and higher? Then the climax came…the story was over…and you were left thinking…WTF? It is called anti-climatic. And for many that is the outcome of diagnosis.
Someone gives you the big A-word. Perhaps a leaflet with the URLs of the major autism organization, maybe the number to call to get put on ANOTHER waiting list for ‘parenting’ classes, and the words…Good luck! Yes, I do believe that was exactly what they said.
We are lucky…we also have that long but inaccurate report detailing PanKwake’s autism. Too many do not even get that. A friend did not even receive a letter…that’s right…no written record at all of her son’s diagnosis.
Let me say this one again…
The cavalry is NOT coming!
Bottom line is that after all that…it is still up to you as the parent or individual to find the resources you need.
Tomorrow I will offer my humble bottom line on diagnosis…and take it back where it began…our personal sage with a beautifully complex #Neurodivergent brain.