Charitable Linguistics

 It is said ASC inclusion and acceptance has come a long way in 30 or so years. Closer reading shows the opposite.

In the last newsletter of the Norwegian Autism Society⁽¹⁾ they seek new blood to integrate into their leadership and interest groups. With such a promising title as “Will You Contribute to Lead The Norwegian Autism Society Into the Future?” they entice at first glance, for those who wish to make a national difference in how ASC is perceived. Who could say no to that sellout question? This is an opportunity to practice what you preach. To put your money where your mouth is and seek to influence Norway's leading voices regarding autism in a new, more promising direction. 

Right?

The second line sounds good enough. 

“Are you passionate about autism?”

What scholar worth their salt wouldn't be? This is our bread and butter, an inclusive world shaped by us, for us. No more being talked over by experts and special educators, or condescended to for a differing worldview. This could be a stellar chance!

Scratching the veneer, though, something interesting appears. The third phrase reveals their true audience: “Do you want to make a difference to autists and their families?”. 

Now, I have spoken and still speak at length of the backwardness of Norwegian ASC awareness on this blog. That is nothing new. I have written extensively that Norwegian society speaks of inclusion and accommodation of autistic people, yet they lag nearly three decades behind. Newly minted author Johanne Nordby Wernø (Kaninen har stått opp, 2025) agrees, writing that resources and groups in this country are geared towards autistic children and their caregivers rather than autistic adults. The self-same adults who are just seen as deeply odd when they begin to speak of systemic injustice and try to overturn it.

I am also aware that the very word autist is a (current) polite Norwegian and Scandinavian way to refer to autistic people. Yet used in this way by the Norwegian Autism Society ruffles my feathers quite a bit, as it perpetuates the medical view of autistic people not only as infants but also lesser beings in need of guidance and help rather than accommodations and being listened to as fellow humans. This infantilization of autistic people, in this case literal children, hearkens back to centuries of abuse and institutionalization. 

The repeated focus throughout the appeal is that the leadership burns not to focus on autistic adults, but rather autistic children and more importantly, their allistic (non-autistic) caregivers. Always with the phrase “for autists and their families” (repeated thrice in the initiative), as if ASC is some mystery disease that stops the moment you turn 18. 

The Central Board⁽²⁾ is where the leadership happens, yet it has yet to include an actually autistic adult on its board, to my knowledge. ASC is less a requirement and more an afterthought. This is parent territory to steer the ship towards safe allistic inclusive waters, and avoid the dangerous autistic waters that exist on the horizon. After all, autistic adults belong on the...

Autistic Experience Council⁽³⁾! Where one's adult autistic lived experience is given away to the benefit of the organization and mayhaps be listened to if their opinions or experiences aren't too divisive. You can write fluff pieces for the organization's magazine, give advice regarding accommodations and suggestions to meetings and sit in on board meetings. No mention of any voting powers to steer the organization into a more inclusive cultural model of neurodiversity, as of yet. The language is emotional and frankly infantilizing: “the experience council fits those who wish to share their experiences”. It almost seems like this council is a form of support group, not a true governance to have a say in how autistic people are represented. Leave that to the allistic adults. The true experts. All to foster an understanding of how it is to be autistic in Norwegian society, but only as far as it relates to “autists and their families”, of course. 

The Academic Council⁽⁴⁾ likewise seems geared toward an allistic leadership role. It makes no mention of any current up-to-date autistic scholarship, nor critical autistic studies or even autistic scholars. Rather 8 random persons with knowledge about autism and a broad knowledge of separate opaque areas of expertise related to autism. They are there to solve thorny complex problems (undisclosed) and must be well-versed in debates and double-check info brochures, filtering autistic voices through a strictly allistic lens. It appeals to researchers of a certain demographic, though whom or what is not stated on the website. Again the potential researchers are urged to foster understanding for “autists and their families”. 

In the Autistic Youth Experience Council(5), autistic teens make up 4/6 of the council members, the other two members being siblings of autistic people... That means the council is one-third allistic, in an organization that claims to help autistic children. This normalizes allistic presence, comfort and oversight in autistic spaces, which undermines the point of an autistic organization. 

These Experience Councils, whether for teens or adults, tell autistic participants and members in no uncertain terms: your voice is conditional and reliant on allistic approval for you to even be on the council in the first place. You are there to legitimize our organization through feelings and writing texts, but without a proper voice, vote, or possibility to change any existing policy to a more modern and relevant stance on your own condition. Your experiences become resource materials for the organization, to trot out to show inclusivity and progress. In the Academic Council, meanwhile, allistic researchers are welcomed to uphold harmful research and stifle any truly autistic scholars who dare apply. The organization has an image to uphold; as the champions of the downtrodden autistic child and their overburdened caregiver, the parental point of view and the charitable model of care is put first. The truly autistic presence must wait in the wings, if not the shadows.

Since the National Autism Society was founded in 1965, one can only expect that clinicians and special ed teachers make up this academic council, as their stance remains medical and infantilizing. Something else to expect from an organization established when ASC was a pathologized boy disorder, would be unfair. Their members include a mix of autistic people and their parents, clinicians and other “interested parties”. Autistic adults, by definition, are outnumbered, outvoiced and structurally dependent, a curiosity in an organization that situates allistic caregivers and their autistic children. As such, it functions as a social club with light activities, parent-directed networks and group sessions in which the leaders parrot empty platitudes and know nothing beyond the medical model. Amongst their stated goals, they include gentle guidance and emotional support framed through a medical lens; anchoring themselves even tighter to the medical model, which faults the individual for their condition at all costs. They proudly display the puzzle piece as their logo, furthering the harmful myth and stereotype of autistic people as puzzles and mysteries to be solved, not humans of flesh and blood with their own struggles and worth.

The Norwegian National Autism Society might be in need of new blood at the helm, but seem thoroughly unwilling to update its stance, policies or rhetoric to reflect modern outlook on ASC. This is of course a shame, as they speak for those who refuse them on principle, but lies through the tongues they claim to speak through, further miring Norwegian ASC awareness and understanding a good 30 or even 60 years out of date. They are committed to a 1990-style paternalistic awareness organization, not a 2020s neurodiversity inclusive peer-led group.

Notes

1. Autismeforeningen Norge.

2. Sentralstyret.

3. Erfaringsråd for voksne.

4. Faglig råd.

5. Erfaringsråd for ungdom.

References

Autismeforeningen. “Vil du bidra til å lede Autismeforeningen i Norge inn i Fremtiden?”. Newsletter. November 11th 2025