To Diagnose or Not to Diagnose (Pt.2)

Yesterday, I told you a bit our almost three year long journey to the Big A diagnosis.

Though to be fair, I suppose our journey began at two and a half when the health visitor failed to take our concerns about delayed speech seriously. It continued when the Early Years SENCo (Special Educational Needs Coordinator) fell into the ‘autism is a boy thing. She’s a girl, she’ll catch up.’ And continued through a whole year of reception where she was known to the SENCo…and experiencing difficulties.

Five years of lost opportunities for early interventions…or were they?

Her community nursery worked with and supported her…without a diagnosis. So too did I as her mother. Only the school failed her…and I took her out of it.

So what happened next? Our lives totally changed right? We got the help that we needed?

No, actually…nothing really changed for us.

After that hour long meeting with the neuro-developmental team, we were promised a report and offered two interventions through CAMHS.

It took three months and multiple phone calls to get that report. It was almost 20 pages long and an in-depth analysis of PanKwake’s strengths and weaknesses. It was full of misinformation that never got corrected (wrong dates, family history, that sort of thing). But it was and is more than most families receive. A friend here did not even so much as receive a letter…she has no PROOF of her son’s diagnosis. Oh, we also received a six-page speech & language specific report.

I was under pressure from PanKwake’s older siblings about her ‘stuff’…collections as she calls them. So I asked for and received counselling in ‘hoarding’. Oh, she hated that word. In the end, the thing that came out of all those weeks of therapy…PanKwake sees her ‘things’ as more permanent than people in her world. She can control them more easily too. 

Not to minimize that. Understanding my child’s behaviors is important. But it was NOT what either my adult children or the CAMHS therapists wanted me to get. They wanted me enforce tighter control of my Pathologically Demand Avoidant child…not empathize with her more.

Oh, I was right too. Now that we are settled more…with Cookie Monster and good friends…her new acquisitions have slowed to a dribble (usually one or two Shoppies or the like per month…as opposed to several purchases per week).

I saved the other intervention…hoping and pushing her father towards one-on-one support to cope with the diagnosis…but that never happened.

I tried for almost a year to get a personal budget to pay for the carer that I had gotten privately. Yes, on benefits and child support I paid for a carer. Not through an agency but first a friend of the family then one of the young students that attended university near us…studying education. PanKwake picked these people herself through the close bonds that she formed with them.

But all I kept hearing from the disabled children’s team was…if you want respite, send her to school. Since when was school meant to be respite. Hmmm, since always, even for neurotypicals.

I would say that we were discriminated against because of our decision to home educate…except I knew other families whose children were in their schools who fought longer and in the end did not get what they wanted/needed either.

What did we get?

Referred to a local special needs after-school project where PanKwake was the youngest and only girl there. Only one other child was ‘verbal’. In the end, we stopped taking her when she was injured by one of the teens who played too rough with her in the soft play. (Not the child’s fault or even the staff who were overworked and underpaid but truly awesome individuals.) She refused to go back after that.

The social services did not like that we had our own team of carers either. They tried to force us towards their contractors. Agencies with high staff turn over and significantly higher prices. I would have had to cut the number of hours per week of support in half.

What’s more eventually they used deception and coercion on the home education front…and I told them… stick your money where the sun don’t shine. (Yes, I actually said that.)

The thing is that government and schools offer the support they are comfortable giving…their services. Not what is best for the individual or family. I could even make a theoretical case that as stewards of tax-payer money they have an obligation to do so…but I won’t…because obviously if I could provide PanKwake with more reliable, dedicated and cheaper support then their system is flawed/broken.

We did receive DLA (Disability Living Allowance) and Carer’s Allowance…but we had been getting those even before the autism diagnosis. And in point, the standard with them is about the level of carer required not a specific diagnosis…though admittedly in the current skewed system that is moot (http://www.mirror.co.uk/news/politics/outrage-dwp-reveals-target-reject-10434547).

We did get some speech & language support in the home. But to be perfectly honest with the PDA and their style of work, it was ineffective. One area that we targeted was sequencing…before and after, first/next/then, following three step instructions. Six weeks of hour long sessions…and instructing me how to work with her in between sessions. All with no results.

Then she started watching Ninjago and Aphmau. These shows are serial in nature. So suddenly order became in important to her. And in less than a month, she mastered the concept of first, next, then, before and after. That has been my experience with her PDA…when she wants or needs to learn something, she will.

I suppose I could say that the best thing to come out of the diagnosis was a better understanding with her father…who had blamed me…said I spoiled her and she just needed discipline. But when the chips were down…he actually accused me of ‘making’ her autistic. So I am not certain of the true depths of that one either.

I suppose what I want you to take away from these two blogs are…

Diagnosis is not magic. Everything is not going to suddenly get easier. 

There is no cavalry coming to your rescue.

Yes, it may open some doors to assistance but those are almost certainly to be on other people’s terms and likely not what you want or need.

Tomorrow I want to look a bit more at the practical side of diagnosis…talk about some things to consider to help you make the right choice for you and your child. Because that is all that any of us can do.