If your child has just been diagnosed as autistic, you’ll find there’s no shortage of people wanting to give you advice. There’s a huge range of experts out there, and endless blogs by other parents of autistic children.
But Briannon Lee, an autistic social worker and scientist, urges you to start somewhere else.
“If you feel like spending hours on Google looking for treatments, please wait until you have first spent hours online reading the words of autistic people,” Lee tells Mamamia. “Listening to them will give you an understanding of what your children are experiencing now, and a sense of the full lives autistic adults are living. You will find most autistic people like myself would never want to change who we are, despite the fact that we live in communities that rarely understand or accommodate our needs.”
Lee believes autistic children should never be forced to do things that cause them distress.
“Eye contact is excruciating for many autistic people like myself. Being pushed to eat a range of foods is hard when we just want something simple and predictable, or have huge sensory aversions. Being forced to sit still, and especially stop stimming, harms us. Stimming – the repetition of movements or sounds to soothe or stimulate the senses – is like breathing for autistic people. It helps our bodies and minds relax and process the world.
“There is nothing harmful to others if we don’t make eye contact, we flap our hands, or we don’t try new foods. It’s only looked down on because people want us to ‘act normal’.”
Lee says pressuring children to conform to these norms is very stressful. It also tells them that the way they are wired is not accepted by the people who love them.
“Some autistic adults learn to glance at people when needed during important conversations, or fidget instead of flapping their hands and rocking during a job interview. Some autistic people choose never to change their natural ways of moving and communicating, or simply cannot even if they wanted to, and that should be completely acceptable.”
Lee has three autistic children herself, who she homeschools. She says some autistic children love school, if they are well supported and accommodated.
"But I think most autistic children find the sensory onslaught, the large numbers of children in one place, and demands to be still and quiet in the midst of that chaos, very stressful," she adds.
"Home education is wonderful because autistic children can learn away from the sensory stress of a classroom. They can meet up with other homeschooled children and have a lot more time downtime to recharge in between. They can be themselves without the pressure of fitting in. They can follow their deep passions without being interrupted to move to the next task.
"Removing my children from formal education was the best thing I ever did. They are relaxed and blossoming in confidence."
Lee only discovered she was autistic herself after her first child was diagnosed.
"Only after I started reading writing by autistic women did my struggles with Christmas parties, open plan offices, answering the phone and large shopping centres start to make sense," she remembers. "And now I have wonderful friends who also have discovered they are autistic after their children, many whose autism was especially unnoticed because they are women and there are so many male-centred stereotypes about autism."
She says the biggest thing that changed her perspective on autism was learning about neurodiversity.
"That is, seeing autism as a natural part of the wide diversity of human brains, and therefore something natural that does not need fixing."
Lee says her children experience the world with a "beautiful unfiltered intensity" and find joy in small things.
"I love that they throw themselves into their interests with passion, whether that be Paw Patrol, painting or collecting beautiful rocks. My autistic children are disinterested in following the crowd, and that makes them both vulnerable and wonderful."
You can read more from Lee at Respectfully Connected.
Have you changed your views on autism after reading the experiences of autistic adults?
Top Comments
I am sure these autistic people would also find it highly insulting that their "condition" (hope I'm using right terminology) forms the basis for the anti-vaxx movement....
I find it offensive. My daughter has Autism, and we do not believe one bit of it.
The voice of the autistic is rarely heard in the anti-vaxx debate, it would be nice to hear it more often. It may bring a touch of sanity to the debate.
I find it offensive that we parents who both vaccinated our toddlers and saw terrible adverse reactions are derided as "antivax". We know vaccines are over prescribed at too young an age and are not safe for all, especially at the number and age prescribed.
My son was not born with autism. He regressed into it after shots that triggered fever, seizures , "night terrors"( ie screaming ) and a horrible red rash on his cheeks. And toe walking. And loss of his words and ability to follow the plot of picture books.
But we're told all that is pure coincidence.
You'd see the light too if it happened to you.
I can't comment on your particular circumstance, and I don't want to offend you by doing so. I know that vaccination can trigger adverse reactions in a minuscule percentage of people - but there is no causative link between vaccinations and autism based on 100s of studies - including global, longitudinal ones. From a public health policy perspective it has to be greatest good for greatest number, I realise that does not make your situation easier, but the benefits far outweigh the risks in the current vaccination schedule.
The problem that I see with this article is that it suggests that therapy "changes" Autistic people, when most therapies are aimed at improving problem areas. Autistic people need to be pushed and encouraged, just like Neurotypical people in order to grow. Not taking Autistic children out of their comfort zones sets really low expectations for them. There are different "levels" of Autism, and it always irks me when "high functioning" individuals, who weren't diagnosed till they were adults, and coped with life reasonably we'll till their diagnosis (found employment, started families), claim to speak for individuals on the more severe end of the spectrum. Doing nothing when a child is unable to communicate, self harms and is not able to participate in activities of daily living is negligent. I have a child who was diagnosed with severe ASD when he was 2&1/2. Therapy hasn't changed him - he's a witty, loving, curious, gorgeous little guy - therapy has brought those qualities out. Because of therapy he is able to communicate, and loves going to a main stream school. We don't force him to make eye contact, we don't stop him from stimming. Learning skills didn't come to him naturally - something as simple as requesting a drink took months of therapy, but he was able to generalise his skills and can now learn other things independently. If your child has just been diagnosed with ASD, please know it's not the end of the world. Your child is still the same gorgeous child they were the day before the diagnosis. Whilst your dreams and hopes for them may change, nothing is ever written in stone and they may surprise with what they're able to achieve, and show you a new view of the world. There are very effective, scientifically proven therapies, which can help your child, whilst respecting their individual needs. Your child should be encouraged to reach their full potential. You will read many opinions on the internet - they're just that - opinions. Do your own research' and find scientific studies in reputable journals. And use quality therapy providers. Spend time with your child, learn what their interests are - just like you would with any other child. Understand their differences, but help them navigate the Neurotypical world. And remember that you know your child best, and what is right for them.
My daughter is 3.5 yo, and she has mild autism. She can say some words, but can not effective communicate all her needs yet. However we have gotten to know her, so we can tell when she's hungry or thirsty cry instead of a tired or grumpy cry. And I agree with the therapy, it's very important, she's in a special school program and gets great help, and speech therapy. It has not changed her, she is still the sweet, happy, very active child. It has helped her learn some every day skills, and life skills. She still has a lot more work to go, but we have lots of hope and love!
You must have the patience of a saint - best of luck to you and your boy, I hope he continues to thrive.
This article's headline is terrible. "Most"? One can only speak for one's self and certainly not for the severely autistic like my son who cannot understand even the concept of his condition. He would love to be able to drive a car like his sister and go on a date with the 16 year old girl who has helped serve as a neurotypical "buddy" at his school since he was 12 but, since he's like a toddler inside and she's college bound, now she has little time for him and of course dates NT boys
Guess what? If you can tell when she's hungry or thirsty cry instead of a tired or grumpy cry she IS communicating. Communication does not have to be in verbal words.