So, yesterday, we left @PanKwake’s journey to self-directed learning and #ProudlyPDA at the beginning of our diagnosis process. Today, I’d like to talk about that. In particular, was it worth it?
Of course, through my reading and research I had already come to terms with the fact that @PanKwake was #ActuallyAutistic, and likely would be considered Pathologically Demand Avoidant. But my troubles with our local council had set me on the path to an official diagnosis. That would be a process which took almost two years.
Yes, you heard me right. TWO years. That is the state of affairs in the UK.
A couple of times, we considered going the private route. While scraping together the thousand pounds or more it would have taken could have cut that time to a fraction, the sad truth is that often private diagnoses are not accepted by the NHS, social services, or local authorities. It could have been a waste of money.
What was the process like, besides too long?
Well, to begin with, we were not forced to wait that long to access some forms of assistance. The doctors quickly noted @PanKwake’s sensory processing struggles and referred her to an occupational therapist. We both loved her first one. In fact, she became a heroine in one of #LiteraryErotica series. But honestly, getting @PanKwake to her therapy sessions was sometimes more trouble than they were worth.
In fact, I had learned so much about SPD (Sensory Processing Disorder) on my own that it really was not that useful. As I have said before, sensory toys are our first line defence. It is still our most powerful tool in facing the challenges of neurodivergence. I think the most helpful part of the OT was feeling validated, that they were listening to me.
When our number finally did come up with the Neurodevelopmental Team, I have to admit, it was perhaps the most positive experience I have had with any professionals. From the beginning, they treated me as the parent as a partner in the process and deferred to me when it came to how to handle @PanKwake.
The actual process took close to two months. We had two or three sessions with evaluators where both I and @PanKwake met with them. Once, she even went into another room with one of them. In addition, I had several other sessions where we went through her early development and behaviors.
The biggest glitch in the process as home educators is they kept stressing the need to see her another setting. For most, that would be school. Thankfully, this was during her failed attempts with the after-school program and special needs center. Both of whom could confirm that I was not ‘making this up’ or had Munchausen’s by proxy. In fact, because those facilities refused to make the accommodations recommended for PDAers, her behaviors were worse there. (Which is why we dropped both of them in the end.)
But if you are home educating your child and seeking a diagnosis, you should be aware of this, quite frankly, prejudice. Their narrow minds just cannot accommodate the fact home and education can be the same and yet different. As I said, they were for us. In those rare moments, when her father or the ‘experts’ pressured me for more ‘structured learning’ @PanKwake’s behaviors were different than when we were ‘at home’ without that stress.
After those sessions with me taking her history and observing her in the office and her afterschool program, the diagnosis process cumulated with the ADOS (Autism Diagnostic Observation Schedule). This ‘test’ was supposed to take a couple of hours. I was put in a room with three ‘experts’ sitting together on the other side of the room and a camera that was recording everything through a two way mirror. @PanKwake was taken into the room next door with another evaluator.
They go through a series of exercises. @PanKwake only made it about a third of the way through the process. She ended up melting down, crawling under the table and curling up into a ball. She then ran out of the room screaming and looking for me. I spent the next few minutes trying to calm her.
I admit I was very impressed with the lead evaluator, who I had been working with throughout this process, sought me out. She asked me if I thought @PanKwake could continue the process. I explained that after such a major meltdown it could be two hours or more before that would be possible, and even then she would be anxious and more likely to meltdown again.
The woman actually said to me that I was the ‘expert’ on @PanKwake. After five years of struggling with an unfamiliar medical system, fighting at every turn to get my child’s needs met, and having one pediatrician vaguely veil threats of reporting me to social services for that Munchausen’s by proxy, I felt validated, heard, and respected. In a way I had not before…or since.
She ended by saying that they would review the video and get back with me in a couple of days to schedule another session. but when she called back she said that they did not feel it necessary to put @PanKwake through that again. that they had enough to make their decision.
No duh? It shouldn’t take a Ph.D. to recognize such classic behaviors. It certainly had not taken one for me. I had known my daughter was autistic since she was two, and suspected since she was a baby.
So, back to the million dollar (Pound) question…
Was it worth it?
Probably not. Yes, we have a ‘label.’ Yes, I have a sixteen page assessment document. Something that many, if not most, parents don’t receive. A friend had to fight to get a one-page letter putting her son’s diagnosis in writing. Yes, that ‘diagnosis’ has been useful with renewing @PanKwake’s DLA (Disability Living Allowance), especially once she outgrew her seizures which was her primary medical condition.
Perhaps, the most useful bit of it was our family though. Her father had always blamed my parenting. Said that if I were stricter, more like his West Indian family, she would have been fine. Now, he had to face facts. Which he did not really do. He was offered further counselling and parenting classes, which he did not take.
Her older sister, too. It has always seemed odd to me that my older daughter, who has training as a teacher and worked primarily with autistic children, refused to see it in @PanKwake. Honestly, the diagnosis did not change that. We are estranged from her over an incident that had it occurred with ‘one of her autistic babies,’ she would have been livid about how insensitive she herself acted. But oh well…
But I think what is most disappointing is the utter and complete lack of support beyond that diagnosis. I think most parents believe that a diagnosis will magically unlock doors to unlimited resources that will transform their lives and their children’s. It does not. We were offered only three additional sessions and that had to be about a specific issue.
Oh, and they said they could help us find a specialist placement for her…at one of their autism units in a mainstream school. The same school that let her escape, where she was bullied, and failed to pick up on her autism. I lie not, folks! Want to guess what I told them to do with that offer?
That was it. Two years of our lives. Close to a dozen sessions. And this was all we got? A twenty minute meeting where they said, “Well as you can. She’s got it.”
To make matters worse (or better as I would discover later), @PanKwake had had enough of being poked, prodded, and examined by ‘experts.’ She is fifteen now and has not been to a doctor or expert of any kind since we moved here almost five years ago. I take that back, she had to go to the GP to be registered. She melted down and I had to carry her in kicking and screaming.
We talked a couple of days ago about the new NHS-Wales ‘Ask My GP’ online service. The doctor she is registered with is… Well, I spoke to her about changing GPs once lockdown is over. There is one practically out our backdoor. And this new online service may actually make it possible for her to assume more control of her health. She reluctantly agreed to consider it.
Because I de-registered her so young (and that school was so poor) she does not have a dyslexia diagnosis. We have struggled with this issue repeatedly. @PanKwake is smart and talented. It is possible that at some point she will WANT to pursue more structured learning, perhaps college arts or design courses or degree. But in order to access those, she will need her dyslexia documented.
We could make ourselves known to the local education authority (LEA). I could once again become that Warrior Mom fighting to get my child the services she needs and should be entitled to. But the cost to me and my autistic self would be devastating.
We could even afford to go the private route now. But, so far, we have not found anyone willing to work with home educators. Specifically, willing to come into our home and work with @PanKwake in a less structured way that would met her PDA needs. And who is to say that if we did, the ‘experts’ would not be so scandalized by our self-directed learning methods that they report us to the LA.
No, the truth is that every time I have reached out to medical, educational, or social services their prejudices against home education has made the process a nightmare. And not once have we been offered any assistance that would remotely make it worth it.
These ‘experts’ are so prejudiced against home educators that they believe it is acceptable to not only bully, but lie and deceive you as well.
And it is not just us. Ask other home educators. Ask #ActuallyAutistic adults.
In fact, the whole process was so traumatic that @PanKwake is not the only one who won’t go to doctors or experts. I self-medicate just about everything. When I began to accept that I might be autistic too, I even choose self-diagnosis. I was not willing to put myself through that whole thing. Especially as the whole thing is subjective.
The bottom line is an autism diagnosis is nothing more than someone’s opinion.
And personally, I know my neurodivergent brain better than any ‘expert’ ever can or will.
If I could go back in time, I would save me and @PanKwake all the pain and stress of the whole thing. But then again, perhaps it was part of my process of self-discovery.
Tomorrow, I’ll focus more on our slippery slope to self-directed learning.