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I am an independent Nurse Consultant and my work specializes in supporting neurodivergent (ND) people. Many of the young people I support are Autistic.

Would it surprise you to know that I don’t ask for their autism assessment?

Sometimes the young person or their parent want to share it with me. Going through an assessment is often an emotional and challenging time for someone. This also represents a pivotal time for the individual and family. Usually it is a time of self-discovery and reflection.

I’m honoured that they offer up what they think could be helpful and is quite personal. Often someone will say, “I’m not sure what else to give you.”

As we chat about the assessment report, inevitably the conversation turns to how difficult the assessment process was.

I recently asked a few people if it was ok to share what they thought about their child going through assessment or their own assessment. I’m sharing a few of their thoughts here with permission.

“It was traumatic.”

“I hated focusing on everything about him in such a negative way.”

“It really affected my mental health in a bad way.”

“We only did it to try to access better school support but it felt like such a waste of time. We know she’s Autistic.”

So on the one hand, it can be really important to discuss their autism assessment as the parent and young person are often processing what they experienced.

But I don’t need their assessment in order to provide care.

Why?

The assessments for autism in the medical setting are done from a deficit model. A deficit model that still lists the Autistic identity as a mental health disorder.

In addition, the assessment is done based on the assessor’s point of view of the person coming in for assessment. Therefore, the assessment is not based on the point of view or experience of the Autistic person.

And that’s who I WANT TO HEAR.

I do my own assessments.

My priority is of Autistic wellness. I look at the person as a whole, valid and valuable person. This is in contrast to the medical model that discusses community members as being built from impairments.

I want to understand what the person enjoys and make more time for this.

I want to help them integrate into the Autistic community as safely as possible in order to improve mental health and create a positive sense of self.

I want to hear what they find hard and what they want support in.

I want to pick apart some details to assess for medical conditions that were over-looked by the other professionals who were too distracted by pathologizing stimming behaviour and deep interests to actually see how to help the person feel well.

The medical system can keep it’s pathologizing reports.

We’ll be out here supporting one another and creating our own definition of what is autism and Autistic wellness.

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