Obviously I have been thinking a lot about this one lately. Particularly in light of my own diagnosis this week of rheumatoid arthritis.
***Let me stop here and make this disclaimer…I am not comparing RA to autism. First of all, RA is a disease. I do NOT believe that autism is. Secondly, getting that RA diagnosis took me less than two weeks and involved a blood test and x-ray. There are objective criteria. Autism diagnosis can takes months or more likely years. And sadly to say, it is more subjective than we want to think, especially when it comes to women and girls. The bias is very much still alive. Finally, there are pills to treat my RA. Not that a different way of thinking and being needs to be treated…and certainly not with pills that change brain chemistry and function.***
I am NOT comparing RA and autism. I am only referring to diagnosis and what that does or does not mean…at least in my case. OK?
To me…diagnosis is about one thing…power and control.
About understanding what is going on and how to manage that.
Looking back at yesterday’s blog and how optimistic I was, my first reaction is sadness. Sadness that there was no help forthcoming. That every time I attempted to access assistance from government, it was a disaster. They offered only what they could afford irregardless of whether than was what we needed. But then I thought…would we have been better off if we accepted their help?
Another disclaimer here, folks. We are ALL biased. All effected by our past experience, our culture/religion/politics and world view. So too am I. I am a Transcendentalist. I believe strongly in self-reliance. That colors how I view the role of government. Put simply…I believe that no matter how big, powerful or expensive, government will never be able to replace community. Like minded individuals who band together to help one another.
That is the kind of assistance that I crave the most…non-judgemental guidance from #actuallyautistic adults about how to help my child.
The thing with all those other supports is that not only are they one size fit all. Created by NT (neurotypical) ‘experts’ without any real life understanding of autism. Take it or leave it. But the strings attached are often too high. In fact using the Social Model of Disability, their ‘solutions’ are often more disabling than enabling.
For me as I said…diagnosis is knowledge. And that knowledge is about empowering myself.
In fact, how I dealt with this latest diagnosis of my illness was not that different to how I dealt with PanKwake’s autism diagnosis.
First thing was shock. But honestly that was magnified this time as RA was NOT the diagnosis I was expecting. Whereas I knew that PanKwake was autistic. I would have been more shocked…and angry…of we had gotten that far to be misdiagnosed because of the ‘autism is a boy thing’ bias. Thankfully, we were not.
Shock was followed almost simultaneously by two conflicting emotions…self-doubt and acceptance. A part of my mind is going…you should have done more sooner…you should have known all along…look at how much time you have wasted. Another part…the ultimate victor in this war…says ‘OK now that you know, so what?’
Now as then…I do not wait for anyone to give me the answers. We live in a time whereby all the expertize in the world is readily available to you…at the touch of your finger-tips. There is not a single piece of research available to doctors, occupational therapists or speech and language that I cannot get my hands on.
So I began now as I did then…I got on the internet. I learned as much as I could absorb at the time. Enough to begin my journey on solid ground. As a result, last night before bed I drank a turmeric smoothie. I am not waiting to see the rheumatologist to be told what to do…I am doing what I can for myself right now.
So too did I then. PanKwake’s speech and language assessment was actually carried out post-diagnosis. I remember the shock of her therapist when my daughter told her ‘I’m a four’ and crawled under the table. She knew that PanKwake was home educated so the Incredible Five-Point Scale was not something she had learned at school. I had taught her. I had researched and given her this tool to describe her sensory overload…without an ‘expert’ guidance.
In fact, as I have now, I had burned myself out with the vastness of the body of knowledge out there. I remember going to one site that had attempted to catalogue ALL the different treatments/therapies for autism. It numbered over 250 and made the disclaimer that was not exhaustive.
Yes, knowledge is power!
But I want to come back to that earlier comparison between my diagnosis of RA and PanKwake’s of autism.
In a situation where there is no clearly objective criteria…no blood tests or x-rays…where the diagnosis process can take years…is the word of some ‘expert’ who has no first-hand knowledge really the only or even the best way forward?
Hear me, now…I do NOT believe in ignorance. I do not believe that parents or individuals should just ignore things and hope they will go away (like I did with my RA honestly…much more so than PanKwake’s autism). I believe they have the responsibility to educate themselves…with or without that ‘expert’ diagnosis.
I do believe too in self-diagnosis. After all she went through to get her autism diagnosis, PanKwake REFUSES to have anything to do with doctors. Of the over dozen appointments with doctors and experts since then, she has attended two…and one of those I had to physically carry her kicking and screaming (something that I am against except in extreme circumstances). As a result, I have self-diagnosed both dyslexia and ADHD.
Here is another difference between the medical model of RA and social model of autism…without that OFFICIAL diagnosis…I could not access some of the treatments…primarily the medications. But in OUR case as a home educating family there are few treatments and/or therapies that we cannot access for autism. Yes, we cannot receive ADHD medications either…but she and I would not at this point choice that option anyway. And if your child is in school or you need financial support then that changes this formula…
But even then…I suppose my problem with ‘official’ diagnosis is that all too often people see it as the end all and be all. Now the cavalry is going to ride up and save them. Money, resources and everything that they believe they or their child needs will now just happen. And it does not. In that way, it is anti-climatic…offers false hope.
You must still fight for everything. Even back then I got that. I understood that diagnosis was just the beginning of the journey and not the end. It did not alleviate my obligation to my child. It just better informed the decisions I did make.
So…yes…I do believe that everyone who needs or even wants a diagnosis should have access to them. But I do not believe that is the only path way. Depending upon individual circumstances…self-diagnosis is just as valid.
As I said I knew for about two years before that Pankwake was Pathologically Demand Avoidant. I was already using most of the strategies advocate by the ‘experts’ in that type of autism. Would I have stopped doing something that was working…just because some ‘expert’ told me my child was not autistic?
No, in fact that is the challenge with PDA in particular. It does not respond well to the most common behavioral strategies used in other forms of autism. So in fact, when we did receive that diagnosis I had to battle all over again to make the ‘experts’ understand that that ‘shit’ don’t work with my child. I am still fighting that war.
5 thoughts on “DX: How I Feel Now…”
I’m so sorry to read of your RA DX. Your story is inspirational; with the adjustments and supports you have implemented with your daughter. Warms my heart. May I ask what the 5 point system is? Looks incredibly useful, and maybe something I could use with my son. Thank you. 💙
It is! We rarely use it anymore as she now has a pretty full awareness of her sensory issues, a good vocabulary and the confidence to express her feelings and needs. But all that began with the Incredible 5 Point Scale.
You can google it and the book it out there too. But I think the most important thing is to make it personal to your child. Use his words to describe the numbers…and his pictures of those feelings…and listen to him about how he wants you to handle him in that moment. There are all kinds of fancy systems out there.
We did once have an app on my iPhone for it as well as this necklace we made…but that was because PanKwake loves technology. She could customize that app too with her pictures and sounds. 5 on the app was her shouting…leave me alone!
RA is just another challenge to be overcome. But I appreciate your thoughts…and your words of encouragement. It is not always easy living our lives so transparently but you hit the nail on the head. I want us to inspire others. Whether it is autism or RA…we can all still be HAPPY.
I love this sentiment! I agree with you wholeheartedly 👏🏼👏🏼❤️
My pleasure 😊💚