Listening to Autistic Adults (Part II)

In Part 1 I wrote about how some parents are coming to us, autistic adults, to ask for our insight, trying to better understand their autistic children.

These parents are on their journey toward autism acceptance, learning and sharing experiences for their children. Some have already graduated from Acceptance School.

These parents have no doubts that autism acceptance is how their children will succeed in life, no matter how much help they might need.

That’s the beauty of acceptance: no exclusions, everyone is in.

I really love to talk to parents who are eager to make their children’s world more accepting, and they are certain they do not need to “fix” or change their children. They know that nothing is broken.

I also love when a parent “gets it” and tries to apply what we suggest, even when they need to keep trying new approaches because the first time was not perfect. They are so invested in promoting acceptance, they are not discouraged by occasional setbacks. They also know that there is not “one size fits all”. They make me smile.

I don’t feel this way because I feel proud of myself. I feel this way because of hope.

I hope the younger autistics will not have to experience some of the things many of us have experienced. We did not have autistic adults telling our parents about the things they knew. And our parents (in some cases) did their best, but in unhelpful and even damaging ways because they only had the “experts” of the hour. And those “experts” also lacked insight.

I hope that younger autistics will grow up with pride. Pride in their neurology and in their accomplishments. Proud of who they are.

These children, feeling accepted by the ones closest to them, will feel confident they can be themselves, and ask for help when they need, without concerns about how to pretend to be ordinary. They will be freely extraordinary!

To the parents who are on this journey, even if you already know:

Sometimes autism has very difficult moments. Don’t let discouragement take over. We don’t have all the answers but we can help you find your own answer, together with your child. Sometimes it takes longer than we would like.

Listen to how your child communicates without expecting one particular way, all the time. I type, but I also communicate with my eyes.

Try to avoid terms used by doctors, therapists, teachers and services providers that grade autistics in a subjective way and it is based on an idea of what being “normal” is.

I am talking about functioning labels.

If you see your children as “low-functioning”, you, and everyone around you, will certainly have low expectations for them. You goals for your children will likely ignore unique qualities they might have. Expectations don’t have to rely on the paradigm of a majority. Autistics do better when they are free to leave the box. Many times, maybe most of the time, that box doesn’t cater to their needs.

If you call your children “high-functioning”, you are telling them that they are better than other autistics. Worse, you are implying that autism is bad but “high-functioning” autism is “less bad” – and “less bad is not the same as good. This is not very accepting. And your children might grow up to be what we call a “supremacist”, devaluing others who are perceived to be less worthy or who need more supports.

Even if you truly don’t mean that, you might be creating a situation where your children might feel ashamed of asking for help or supports because of the perception that “high-functioning” autistics just need to work harder and be “less autistic”. Not very accepting either.

I understand the need for labels when getting services or working with schools. But you can help us change this culture by using simply “autistic/autism”. No “high/low” anything. You can insist that people who work with your children do not label them based on a false perception and limited knowledge of one’s strength. We are all part of one spectrum.

But I want to say it again:

Thank you!

Thank you for understanding and respecting autistic safe space. This is your children’s space too.

Thank you for being the parent that does not demonize autism by writing about your child’s most difficult moments in a dehumanizing way.

Thank you for being reasonable and reviewing the therapies your children have and making sure these therapies are not erasing the very essence of your autistic children, or that these therapies are not trying to curb unharmful movements for the sake of “normalcy”.

Thank you for being an ally parent.

We are here. We love taking to you.

I cannot wait to see the amazing autistic adults you are so lovingly and respectfully parenting.

For parents new to the acceptance movement, if you are feeling overwhelmed, there are lots of resources from us, the autistic community, to you. Right here, the Autism Women’s Network has a forum.

You can also check this site: http://tool-kit-autistic-alternative.blogspot.com. It is a site in progress, so come back often.

And let other parents know about these resources.

 

 About the Author, Amy Sequenzia.