Recently there was a new blog on the NCSA website. It is by an “Autism mom,” The author’s name is Nazreen Bibi. She is based in the UK and is a campaigner, mental health nurse. parent and advocate. She states that “autism moms” are marginalized by autistic people in the neurodiversity movement.  Her words are in italics, my rebuttals will be made in regular text.

Original Article : Dangerous World of Marginalizing Autism Parents

 The term neurodiversity is often used to describe a political movement claiming to protect the autistic person’s basic human rights. So, initially I was keen on joining the movement and therefore thought little of sharing my views as a parent, using the #ActuallyAutisic hashtag, because of course my child is Actually Autistic.

The #actuallyautistic hashtag is reserved for autistic people only. If you are not autistic, you have no business using it. We aren’t leaving neurotypical people out of the conversation. Autistic people should be LEADING the conversation.

Then I was told this hashtag is ringfenced for a subset of autistic people who can express themselves and that as a non-autistic parent I am barred from using it on my autistic daughter’s behalf. This childish rhetoric could have easily have been dismissed had I not seen how this nonsensical “we are real autism; we speak for autism” mentality harms parent/carers like myself and our severely autistic children. It doesn’t take long to see the vast difference between autistic people who are social-media savvy, deliver speeches at events, write books, sell items online and engage in research — and the adult autistic child I love and care for at home. 

Anyone who is autistic can use that hashtag. It literally means anyone who is using the hashtag is autistic. If you have an autistic child, know someone who is autistic, married to someone who is autistic this hashtag is not for you. This is not to slight anyone. Its to literally to give autistic people a voice. This mother is misunderstanding the purpose of the hashtag. This is not to dominate but to have a voice. Nothing more, nothing less. There is no such thing as “severe autism.” The Fallacy of Functioning Lables. Using functioning labels for autistic people is harmful and inaccurate. There are plenty of people who she would consider “severe” are writing tweets and blogs. There are autistic people with different strengths and struggles online. This mother is assuming everyone is “high functioning.” No one is saying they do not love of care for them. They need to respect boundaries of the community.

At age 21 my eldest wears pads, suffers from epilepsy and communicates using one or two words, gestures and noises. She needs constant assistance to maintain her safety and wellbeing. Her capacity is limited; therefore, it is my duty as a parent and her carer to make decisions in her best interest. What is the possible validity of online autism communities claiming to be #ActuallyAutistic that exclude all those like her, who are obviously autistic? 

I don’t understand why she is sharing intimate details about her daughter’s life. I know I would not want this shared with millions of strangers. The NCSA website does receive a substantial amount of traffic. Why would she be sharing information about her daughter that she would never share about herself? We do not exclude anyone. We believe in dignity. Why do non disabled people deserve dignity and and disable people do not?

These same neurodiversity groups are dangerous for other reasons. They often share harmful, libelous ideas which echo the evil Refrigerator Mother theory of autism. They divert discourse into meaningless debates over trivial issues such as the puzzle logo or the terms used to describe severe autism. They claim only articulate verbal individuals should have a role in guiding research. The censoring of voices like mine undermines my child’s mere existence, let alone the urgently needed parent-led campaigns which for years have been at the forefront of changing political, health and social care policies both nationally and internationally. 

We debunked the idea of the “refrigerator mother.” This was used in the 60’s and 70’s as a cause for autism. What the writer says here is completely false. The puzzle logo is not trivial. You are not listening to what autistic people are saying. The logo was created by parents, not autistics. What people have done in the name of the puzzle piece would make people cringe. All autistics should have a role in research. If they say “severe” autistics are excluded, why are non autistic parents the default?

In addition, there is the noxiousness of a group of strangers online claiming to have better insight into your child than you do. The baseless idea that people can self-diagnose. The idea that autism research is only valid if the researcher is autistic. The ludicrous idea that autism is some quirky difference rather than a lifelong disability. And of course the Queen of All Repulsive Ideas: that there is no spectrum and that all autistic people can use online social media platforms and that communication is hindered only because the parent has failed to explore communication tools or that autism is a result of childhood trauma.

We do not claim to know your child better than you. It is true we do know how an autistic child is feeling because we have been there. Self diagnosis is valid. Saying that is not comes from a place of privilege. I am not self diagnosed but there are many people who do not have access. This writer is from the UK where they have universal healthcare. I am in the US and healthcare is not a human right.  No one said that autism is a quirky difference. We are disabled. But disabled is not a dirty word. We have experienced the therapies you put your children in. Some are very traumatic and we ask you to listen. Not all autistic people are hateful. A lot of us want to educate to make your child’s life better so they do not go through what we did. We want to save them from a lifetime of trauma. ABA is a prime example of this. The idea of “severe” autism does lead to quackery being used on them such as MMS, GcMAF and the like. Just remember its the autistic people you don’t like very much who are getting this quackery brought to justice. Just google my name. You will see. I did not speak until i was 5 and have my own issues if you must know.

Marginalizing parent/carer advocacy/opinions and actual lived experience is a form of gaslighting which has a significant negative impact on our disabled children, whose very lives depend on the strength of our voices and our ability to to heard. We must always speak out, giving voice to the voiceless.

Speaking out for our right does not marginalize parents/caregivers of autistic people. Yes your opinions do matter but we have the lived experience of being autistic. We are here to educate you and to fight for our human rights. It is not gaslighting if you are perceiving us in the wrong light. Every autistic has a voice as long as they are permitted to use their voice in the way they feel comfortable or able to. Not every voice is verbal. If you say voice only counts if its spoken, then you need to read up on oralism. Keep that in mind.