Ways Forward…

A lot is being said right now about diagnosing autism in children. Primarily because it is election time…and because one London NHS trust is talking about limiting autism diagnosis to the ‘most severe’. Like anyone can define that?

So over the past few days, I have told you about our journey to diagnosis and yesterday I gave you some things to consider before making your own choice.

Bottom line…how do I feel about diagnosis?

Everyone who needs or wants one should have access to compassionate, quality diagnosticians. It should be a fully informed consent process. 

Because I believe that knowledge = empowerment. The more we understand the better we can cope and equip our child to do so too.

But at this time…diagnosis does not necessarily empower or equip. It does not even provide us with sufficient knowledge sometimes. To be told…Your child is autistic. Then…nothing…

All that time, emotional pain and perhaps money for…NOTHING. To be just as lost as you were before?

Parents and adults need KNOWLEDGE, COMPASSION and SUPPORT.

But is government the place to get those? Councils? Schools? NHS/doctors/’experts’?

How can an ‘expert’…someone who has a degree but has never managed a meltdown and certainly never experienced sensory overload…provide any of those? A social worker trained to handle crisis and disfunction? A teacher with thirty children trying to crowd control…let alone teach?

What do any of these understand about autism? For that matter what do I as a neurotypical parent truly understand of PanKwake’s wonderfully neurodivergent mind? Even another neurodivergent person can only understand his experience of autism…not PanKwake’s.

But when it comes to knowledge, compassion and support…I want those things from REAL experts…especially #ActuallyAutistic individuals. And other parents sharing this journey with me.

  • I don’t want to hear parenting from a single 20-something with no children and a degree.
  • I don’t want to hear about autistic ‘traits’ from a researcher who studies children like they were mice running a maze.
  • And I sure don’t want some politician telling us what support we need because they or their family own a share in that support agency.
  • Or even worse to be told about ‘autism’ by a multi-million pound organization led by neurotypicals who funds research into the causes and cures for neurodivergence and who advocates therapies designed to make individuals ‘more normal’ by ‘extinguishing’ behaviors such as stimming.

That though is what is on offer.

I read the manifesto on neurodivergence from one of the ‘autism-friendly’ parties. It talked about everyone being entitled to support…but not about who determines what that support is or giving individuals and families the choice in it. And I thought…great, being told by someone else what we need, then forced to accept it. And supposed to be grateful for it.

I do believe in…

Sharing KNOWLEDGE with one another…first hand knowledge and life experience. The research I want to see is studies done by neurodivergent scientists who use their personal experience to formulate their theories and manage the studies with the empathy that only someone who truly experiences something can.

Promoting COMPASSION among neurodivergent individuals and neurotypicals…led by the ND community on their terms and not imposed on them by NT society or organizations.

SUPPORTing one another…my passion being #Autistic adults sharing first hand been-there-done-that experience with parents doing their best to meet the needs of their neurodivergent children…and mentoring those kids.

Here’s how I wish things had been…

I wish that the health visitor that we took PanKwake to when she was not talking at two and a half…had been trained to use pre-screening tools to determine if my child might be neurodivergent.

I wish that she had then sign posted me to information and support by truly neurodivergent groups…led by #ActuallyAutistic individuals with a passion for helping me to raise a HAPPILY autistic individual.

I wish someone from that organization had come into our home for a couple of hours every week for six weeks or six months depending on our needs. I wish that person had sat on the floor with us and explained to me options…things that I could try to communicate better with my child.

I wish I had been connected to a support group co-led by an experienced autism parent and an #ActuallyAutistic individual. I wish that I had been given the chance to meet and become friends with other parents who understand this journey.

I wish that we had been offered truly neurodivergent friendly housing…some place that I did not have to constantly worry about the noise my child made…or being reported to social services because PanKwake had another meltdown. Some place where my neighbors waited until the storm had passed to knock on the door and instead of screaming and yelling, they said…that sounded like a bad one, is she ok? Do you need a hug?

I wish we had been given an advocate who went with us to handle every single idiot ‘expert’ we had to deal with. Someone who politely but firmly interrupted and said…Yes, she gets that BUT that is not practical/correct…when talking about neurodivergence.

Watergun 4 featureI wish that PanKwake had been given the chance to attend a neurodivergent school with neurodivergent teachers…think about Dr. Xavier’s school in X-Men. How cool would that be? Except of course I want her to come home to me after school. Because NT parents can not just love but LIKE and admire their neurodivergent child’s brain. Am I jealous? Maybe a bit…I love how that mind works.

I wish that all of the support we received was based upon what PanKwake wanted…and secondarily what I needed. (Actually we do our best to make this one real.)

And I wish that EVERYONE…every difference…be that race, religion, gender, sexuality, DIFF-ability or anything else…were valued and respected by EVERYBODY ELSE.

Yes, we are far, far, far from that dream.

At least in terms of ‘REAL’ life. But I don’t think we are all that far off in cyber. And as PanKwake has taught me…what is real anyway?

Is support, compassion and knowledge any less valuable because it is from someone half a world away? Do we as a community have the ability to provide those to one another in a way that is better than anything on offer from government services? Even diagnosis?

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