Sometimes, (especially lately), my heart can become very heavy with the words that are spoken about autism in the general public. These individuals are judged, discriminated against and so incredibly misunderstood. These people are my babies and I have to do everything I can to share autism awareness with the public. And there are so many other beautiful babies (and adults) in the world that I am advocating for too. Our children have gifts. Autistic people's lives matter.
The other evening I put my pajamas on at 6pm. I felt helpless. I felt depressed. I started to cry to my husband. "Could you imagine being judged simply because you had neurological differences? Could you imagine if people thought they knew who and what you were, simply due to a diagnosis? Why is it ok to discriminate against people who are different? IT'S NOT OK! I was doing that yelling, crying thing. When mad and sad compete. WE HAVE TO CHANGE THIS, I NEED TO CHANGE THIS, I told my husband.
"But you are. With your blog and your Facebook page and the information you share", he said kindly.
"YES, BUT IT'S NOT ENOUGH", I said. "Because I see discrimination and judgement and stereotypes every day".
The next day I felt a sadness hangover. And then it came to me- I don't have the answers to change the world alone, but I can get a little help from people who DO have the answers. So I put a message on Facebook requesting to be connected with teens and adults with autism. I needed their important feedback that only they could offer.
To begin, I want to share that most parents use Person First Language. That means the person is put before the diagnosis. A child with autism. A man with autism. However, in the autism community, many self advocates prefer Identity First Language. They prefer terminology like, “Autistic,” “Autistic person,” or “Autistic individual” because they understand autism as an inherent part of an individual’s identity. So for this post I am using Identity First Language.
I was so happy to receive feedback from many autistic teens and adults. I read through all the responses, laughing and crying. It was eye opening and amazing. I asked most individuals the following questions:
- What’s important for parents of children with autism to know?
- What do you wish the general public understood better?
- How can the world be better adapted for your needs (schools/communities/jobs/etc.)
- How would you answer this. “I wish the world knew how hard it is for me to:”
- Do you have sensory seeking or avoiding tendencies? What does that feel like?
- Anything else I should know?
So now, with much excitement, I am going to introduce you to my awesome panel of autistic experts! I also shared this info in a Facebook Live Video HERE.
First, meet Brad. He is awesome. He’s a friend, and he gives the best feedback on my page and his insight helps me parent my boys better. True story. Here are his words.
something i wish more parents knew is not to worry about the future so much, dont give up hope. so many parents are told us autistic people will never do much in life, we wont graduate, fall in love, get married, work etc so people write off our future before we have had a chance to live it. sure not everyone will reach the same things in life but not everyone wants that. just dont give up hope because even for the most severe it can still happen and if it does not then maybe that person does not want that. our lives may not be typical but that does not make them any less. something the public should understand is just because we cant always talk does not mean we dont understand, you might get no response but that does not mean we did not understand. we are not stupid tho we can play stupid if it benefits us lol. but people talk about us like we are not even there. its frustrating. something the world should look at to better fit our needs is making the world a more sensory friendly environment can do so much for us. like schools and work places would get so much more out of us if we did not have so many sensory issues to deal with and we need autistic people involved with cutting down on the sensory issues since so many nt people dont feel what we feel. also the world should learn communication is so much more than verbal. give us lots of different options to communicate and respect that. i wish the world understood how hard it is for me to try to fit in their mold of what they feel a person should be, i cant be nt no matter what people do to force that. i am both a sensory seeker and avoider. when its bad sensory it hurts, like its the worst pain someone can imagine at times. when its good sensory its like its the best sex ever, it just feels so good and gives you a sort of high and deep relaxation. its amazing.
i wish the world understood and accepted stimming. for me stimming is more essential than air basically. its something i need. but the world looks at you crazy for it.
oh and i wish the world understood being autistic is not a bad thing, no cure is needed. we are not a epidemic
oh and i think the autism community needs to work on training police on how to treat us because time and time again police dont know how to treat us, we get abused and then in the future we wont seek out the help of the police when we need them the most. years ago i was groped on my porch by some guy and i would not call them as i saw police as another danger since they dont speak autism. i had people break in and i would not call them. also schools should not call the police over a simple melt down.
Are there any general sensory things parents and educators should be more aware of- besides just lighting (I hear flurescent is bad, is this true?
yeah lighting is bad both the flashing, the sound, the smell of fluorescent lighting. floors can be a bad sensory issue, the way lighting can hit it it can cause a glare of sorts. then there can be patterns of the floor and textures and smells and sounds of things moving across it and because flooring takes up so much space it can be very overwhelming. some seating can have a bad glare to it too, same with things like tables. anywhere you can cut down on glare is a good thing. also i wish places would be mindful of smells, like for example stores here like strong smells around the doors like christmas they put a strong cinnamon smell around the doors and it makes you so you dont want to go to the stores and with so much food coming from the stores it can be very difficult lol.
And now meet Jonathan. Jonathan and his wife are autistic. He is a dad of three, and he shared his children may all be on the spectrum.
1. What’s important for parents of children with autism to know?
You’re child is not broken. He or she is a beautiful, wonderful, gift from God. Everyone has strengths and weaknesses. This includes kids with autism. You need to try to discover what your kid is good at and what interests him or her. Some might call this obsessions we call them special interests. • From my experience, children with autism don’t always know what they want so melt downs happen. You are not a bad parent when this happens. Your child is crying out for your help. Their melt downs are not being “strong willed” or naughty. They simply don’t have the words to express themselves. • Don’t postpone therapy. The sooner you get help the better. Fear of the unknown is worse than continuing without help. And there is a lot of help out there if you look. Therapy has been life changing for our family.
2. What do you wish the general public understood better? I wish people were more sympathetic towards people with ASD. It also feels like unless you have an official diagnosis people with ASD are not taken seriously. I wish people didn’t automatically assume parents are doing a bad job with their autistic children. There seems to be this idea kids in the spectrum when they have melt downs are trying to be strong willed, aggressive, mean, or angry. Many times kids have melt downs as they are overwhelmed with too many sensory inputs including a lot of noise, strong lights, strong smells, bad tasting things, being touched too much, or crowded areas.
3. How can the world be better adapted for your needs (schools/communities/jobs/etc.) Schools: Become aware of bullying issues at schools. Most often autistic people or Neurodiverse people suffer more bullying then Neurotypicals. Offer training for teachers, administrators, and other parents about autism and other mental health issues. Special Needs is not just for special education teachers. Communities: Become more inclusive of autistic people. This means inviting the autistic kid to birthday parties. It means getting to know her parents who have autistic kids. This means understanding that sometimes people autism or very blunt and don’t mean to be rude. Employers: Many employers make reasonable work accommodations now. This is required by and protected by law. An official diagnosis from a licensed therapist is typically required to be taken seriously. At my job I have a cubicle all by myself and I’ve been provided head phones as the office can be very loud.
Of note: Three federal laws protect the rights of people with disabilities, which can include people with learning and attention issues. These laws are the Americans with Disabilities Act (ADA), the Individuals with Disabilities Education Act (IDEA) and Section 504 of the Rehabilitation Act.
4. How would you answer this? “I wish the world knew how hard it is for me to...” • Listening to conversations. I hear conversations all at the same level as other noises. So if more than one person is talking in the same room to me they are at the same noise level. Also, there are other inputs such as strong lighting, strong smells, or other noises it is hard to focus. I become anxious or overwhelmed after a time and need to get away. The way I cope with this is reading lips. There’s also interesting enough gives the appearance of eye contact at times. • Driving in traffic. There so many inputs including sounds, lights, at times smells, unpredictable people, etc. • Engage, play, and take care of children. I know parents were new or typical have a hard time with this as well. However, for me the crying, fussing, yelling, unknown reactions, etc. or even harder I think that most people. I literally get really bad headaches when my kids cry for any period of time.
5. Do you have sensory seeking or avoiding tendencies? What does that feel like?
• Scratching Throat
I’ve had a tendency since I was a kid to scratch my throat. I sound a lot lot a pig. It feels good on my throat, nose, and ears. It also helps relax when I’m nervous. Often I do this thing without realizing I’m doing it. When I do it in public people look at me kind of funny. I typically just ignore others or try to do it softly.
I find noise cancelling Bose headphones to be a life saver. I literally calm down in minutes after having my headphones on. If I listen to my music 🎶 for a bit I’m a different person.
I also corresponded with Sarah. She is a Teacher, she’s open and she wants to use her experiences to help others. You can follow her on IG @ @adultswithautism
Sarah wasn’t diagnosed until she was 21. She says, “I went through the diagnosis on my own because it was important for me to know why I felt so different. A lot of people don’t like labels but hearing that I had autism was such a relief for me.”
I wish the general public knew that just because I can drive, have friends, have a successful job as a teacher and other “normal things” doesn’t mean I don’t have autism. I internalize a lot of my thoughts and behaviors until I am alone because I feel uncomfortable with the looks I get. This means, that after a long day at school, I usually spend the majority of my hour drive home stim-ing. I think the world in general should just be more accepting of invisible struggles.
I wish the world knew how hard it is for me to socialize. It is difficult and overwhelming but sad at the same time. I want to have lots of friends but I chose to be alone most of the time. I wish I didn’t feel anxiety in social situations.
I am very sensory seeking and rock a lot. I also have a weighted blanket for pressure and love swings and rocking chairs. I play with putty and fidget spinners when I’m anxious. I also get overwhelmed by certain noises. I have a strong olfactory sense and can become very relaxed when smelling familiar scents. I tend to be alone a lot of the time and use that time to relax or recuperate from a long day or stressful day.
Rachel is an awesome 18 year old who is successfully learning to self advocate. Yesterday on Facebook I shared a letter she wrote to teachers and coaches at the beginning of the school year.
She shares “a lot of my teachers don’t understand me and expect that I know everything like my classmates and if I don’t then they think I’m stupid. I want more teachers to learn about autism. I wish the world knew how hard it is for me to get my words out when I get upset. I hit my head when I’m mad or when there are noises that I don’t like. I like deep pressure. I usually get a headache when I’m overwhelmed. I wish the general public understood that teens with autism have our challenges and it’s okay to ask us about our autism. Not everything is going to be easy for me and don’t stare at us in public.”
Sarah (yes, another Sarah) is a Special Education Teacher, and is funny and insightful and she has an important voice.
What’s important for parents of children with autism to know?
When meltdowns happen don’t try and hold our meltdowns in because of what it might look like to others or your embarrassed. It’s out only way of regulating and the only way to bring our world back to homeostasis. Also we don’t always flap when we are overwhelmed in a negative way, a lot of the time it’s because we are so excited that our body shows it with a bang!
What do you wish the general public understood better? - That people on the spectrum can be gainfully employed and live a productive life. We can get married, have kids, and do everything else everyone else does just sometimes in a more blunt, not always socially appropriate, high interest way! We try so hard everyday to put ourselves in your shoes to empathize, but sometimes we just don’t get it... and that’s okay.
How can the world be better adapted for your needs (schools/communities/jobs/etc.) Explicit instruction!!! Good lord, if people would stop with the sarcasm, hidden cues, and slang everything would be so much easier! However, since that will not happen, please be patient with us, we are really trying to understand. I wish the world knew how hard it is for me to make friends. Even as an adult, the entire concept is mind blowing and makes absolutely no sense.
Do you have sensory seeking or avoiding tendencies? What does that feel like? Anything else I should know? - I only have meltdowns when I’m sensory overloaded. It starts with a tingle in my spine and I know it’s coming. There is no way to avoid it, only prolong the time I have to get somewhere socially appropriate to have my melt down. When the lights are too bright, when the sound is too loud, when my clothes is too tight or too lose or too much texture or theirs a winkle that’s not suppose to be there, when the lights buzz yet no one else hears it, or since you are an adult and can’t always just eat your 3 sensory safe foods the world can be a devastatingly upsetting place. It’s like a time bomb constantly waiting to go off and unfortunately as an adult you don’t have the luxury to meltdown when you need too, especially as a teacher with a room full of teenagers waiting for instruction. It starts with a tingle. Then goes to the shaking of my leg, then to hand flaps (small at first) to head ticks to an indescribable feeling that my skin has ants crawling on them/ on fire. Every fiber of my being is going off and there’s nothing I can do but hold it off just enough time to get my class covered and into a single room bathroom that’s safe. Every day is a battle and I’m exhausted.
Mariel shares some important words with us.
Hi. I have a high functioning type of Autism. I feel the world has put a stigma on people who are different. I feel labeled every day. I wish the public knew how it feels to be labeled and so not understood. I wish the rest of the world knew how hard it is for me to understand people's feelings, because I struggle with that.
I battle with feeling so misunderstood every day. And those without autism don't get it at all. I think that society gives us a stigma, and a bad one at that. I know I feel that way all the time.
Peri is an articulate, awesome, 21 year old and wants to be a special education teacher some day. She has a Facebook page called Not Raingirl.
I suppose what I want the general public to know most is that we are members of society and we should be treated with as much of respect as neurotypicals. We have so many gifts to offer society that we often don't have a chance to share because people are too quick to judge and label us especially as we reach adulthood and lose that "cute quirky persona" and instead it just gets labled as weird and creepy as we are not acting as "typical adults" we can be valuable members of society you just gotta give us a chance.
The world just needs a open mind like often schools and employers put barriers up impossible barriers for us to reach because of our needs it's like they are setting us up to fail. Yes we have a disability and yes that can cause us to find a lot of things difficult but it does not mean we shouldn't be given a chance. It all just comes down to having a more open mind and seeing us and our autism as two separate things because often schools/ places of work just sees it as a whole which leads them in focussing on our disabilities like a medical record instead of actually focusing on the person we are. Everyone Having an open mind could open so many doors for us.
I wish the world knew how hard it is for me to show how much I care for the ones I love. There's the big myth of people with autism having no empathy which is crazy because in fact we care too much. I find it extremely difficult to show and receive love in the "right" ways. I often get mistaken for being cold, harsh and rude because I don't go hug my crying sibling in fact I often shout because of the awful noise they are making but I'm also shouting because I can feel there hurt so deeply that it's causing me pain and I don't know how to make it better for them and that crushes me because I'm human just like you. I wish I could express myself in the typical ways but I know that can't happen so I just wish the world could understand that we do care we care A LOT.
Do you have sensory seeking or avoiding tendencies? What does that feel like? Personally I'm both a sensory seeker and an avoider. I crave deep pressure as I often feel like a balloon just floating around it's hard for me to feel grounded so throwing myself into walls, climbing in tight places, getting tight bear hugs and weighted blankets/vests help me feel more solid helps me gain that body awareness I don't usually have.
Hot wax, cake batter, clay, water, paint are all great things for me to put my hands in I can't explain it it just feels good between my finger tips. I like the way water feels as I swish my hands around in a pool.
However there are also some textures that I gag if I touch because as well as feeling the itchy nylon shirt I can also like taste the texture and then I can smell the texture ands it just gets so overwhelming that I gag and even sometimes I even puke.
Noise is another thing that I avoid massively, I have to wear my noise cancelling earphones just to get through each day as everyday noises can cause me such pain. There are some sounds that are so bad I can taste the sound; like the sound of forks scraping across plates is enough to have me gagging and puking. The sound of people eating is enough to send me into a wild rage it's like I have no control over my body because even when the sound has stopped I can still hear it it's like never ending touture.
I love light machine, laying in a dark room looking at all those lights fly across the ceiling is like my own personal heaven however I can't stand the sight of the sunlight shining through my window it's too bright it burns my whole being.
We can be very hard people to love especially as adults because we have often gone through so many rejections already so we put up even more walls to protect ourselves. We are prisoners of our own mind but it dosesnt need to be a life sentence we just someone special to find the key. We need people to stop trying to bring us into your light and just let us bring you into ours because just because at first you can't see our light does not mean we are living in the dark.
I'm so happy Chris shared with us too –He runs a wildly popular page called, “Autistic not Weird.” He is an autism speaker from Nottingham, England and gave me lots to think about.
What’s important for parents of children with autism to know?
In my opinion and experience, the best things parents can do for their autistic children are:
1) Enter their world. Lining up toys or watching YouTube on repeat may not appeal to the general population, but it clearly means something to the person experiencing it. And for a child who struggles to meet the world's demands, it means an enormous amount when somebody makes the effort to meet them where they're at.
2) Push them outside of their comfort zones. Obviously this is one to be careful with, because anxiety is very real when it comes to autism. But the best thing that was done for me was being given opportunities (sometimes pushed!) to leave my comfort zone, but with the cast-iron assurance that support would be there if I needed it.
3) Find things for them to take responsibility for, which are appropriate to their age, development and interests. Responsibility builds people.
What do you wish the general public understood better?
First of all, the best thing they can do for us is see each autistic person as the individual person they are, rather than just a walking syndrome. Autistic people differ from each other for exactly the same reason non-autistic people do. Just because we have a diagnosis doesn't mean we can't have a personality too.
How can the world be better adapted for your needs (schools/communities/jobs/etc.)
When it comes to schools, it's a matter of hiring understanding staff and giving schools the bloody funding to cater for children with learning difficulties. And (both for those with and those without learning difficulties) stop the focus on one particular method being "the right method" for all children. Maybe if people think differently, we should let them approach problems differently.
In the adult world, I'd turn the job interview process on its head. It's not the best candidate who gets the job- it's the person who answers the questions best. Job interviews are a big example of how the world has been built with "everybody else" in mind, and people should be offered jobs based on their competencies, not on their level of interview skills.
How would you answer this. “I wish the world knew how hard it is for me to:”
Wear a non-autistic mask all day, whilst fearing judgement from other people whenever it slips, because life experience tells me that people will scorn me for reasons I don't understand, but also not explain what I did wrong or how I can meet their expectations better.
I have a refreshed outlook on autism. On the strengths these incredible humans have and share with us, while navigating through a world that doesn't always understand them. I am so grateful to each individual that shared with me and the entire world. Together we will continue to fight for a world where neurological diversity is celebrated, not judged.