What This Autistic Mother Wishes Social Workers Understood


Dear Social Worker,

Please understand that when you are dealing with an autistic child, you may also be communicating with an autistic parent.

Misunderstandings can happen with any parent, but when a mother with autism is being misunderstood…

You may interpret her communication as obstructive when she has a social communication disability. She is doing her best. When you are starting to “get your back up,” please stop and rethink and rephrase.

You may think she is aggressive and shouting. She may struggle to moderate her tone of voice, and may lack some self-awareness, particularly in times of great stress and anxiety when her adaptive skills are lowered.

You may think she is not engaged with you and not seeming to take an interest in what is happening in the meeting. That mother’s whole body — how she feels, sees, hears and smells her environment may have reverted to a basic “fight, flight or freeze” protective mechanism.

You may think she is overly focusing on the disability of her child. That mother might be reading everything she can find, doing more research and asking more questions than what some professionals may find comfortable. She is trying desperately to help her child and find answers. And maybe, she took very literally the advice you gave her to “give an example of the worst day.”

You may think she is overly controlling when she tries in vain to control her situation. She may not know the hierarchy of the system — who can and cannot be useful, who can or cannot make decisions, who is or is not influential.

You may think she will not accept help offered, and is not coping, because she has not been told the processes with which she needs to engage. The uncertainty of not knowing what is coming next, how long it will last, or what her role is can be overwhelming.

You may think she has not formed a strong maternal attachment to her child, when she knows her child. She knows how they need time to process their own pain. She knows when her child is overloaded, the worst thing she can do is to touch and give additional input to her child.

You may think a lot. But the facts are, nearly half of dads with an autistic child will have autistic traits themselves. Girls are referred for an assessment far less often than males, and in the U.K. over 80 percent of general practitioners admit to not knowing enough about autism to feel comfortable making a referral.

infographic about autistic moms. Info is contained in text.

There are families right now that need you to listen and “do.”

Do become aware of how women with autism may present differently than men.

Do give her any paperwork at least three days before a meeting.

Do make sure meeting rooms are comfortable and sensory-friendly.

Do give her natural light.

Do give her a position where she can see who may be walking behind her.

Do give her a flowchart of the system, and show her what stage she is in.

Do make your communication clear, concise and without hidden meanings.

Do tell her who will be working with her, their role, their limitations and what they can do to help her.

Do allow a trusted friend or advocate to be with her.

There are many good social workers in the U.K. and beyond working well with families. Be one of them.


An autistic mother struggling to be heard

Learn more at Autism Women Matter.

The Mighty is asking the following: Write a letter to anyone you wish had a better understanding of your experience with disability, disease or mental illness. If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

Lead photo source: Thinkstock Images




Flying Under the Radar as an Autistic Adult With ADHD


For as long as I can remember, I’ve always been a little bit different. In pictures from when I was about 3, I’m looking in another direction and fiddling with my fingers. In preschool, I was the hyper kid who did whatever she wanted to. I have vivid memories of playing in the Little Tikes playhouse while the rest of the class was sitting obediently, following what the teacher was telling them to do. I was a free spirit.

In elementary school, I remember trying to play with the other kids, yet something just didn’t “click.” They would laugh together, and it happened naturally. I would force a laugh and get strange looks. I got along with my peers, however there was still something that set me apart from them.

Next came middle school. The other girls were suddenly interested in things like their appearance and boys. These things never crossed my mind; I was simply uninterested in them. I had an undying passion for playing Sonic the Hedgehog. I was obsessed. I got teased for this, but I didn’t let it stop me.

High school arrived, and I was still much happier playing Sonic than giving a care about boys or what I looked like. Comfort took precedence, and I still preferred t-shirts and athletic pants over “girly” clothes. While the other kids sometimes gave me a hard time about it, I was confident in who I was and didn’t let it get me down.

In college, I continued to play video games while some of my peers started partying and drinking. I was working at the time, and in some ways, I stuck out like a sore thumb amongst my coworkers. A lot of them seemed to find perverted jokes funny, while they grossed me out. They would talk about how they’d go to clubs and stuff that I wasn’t interested in. They knew I was different, yet we all still seemed to get along, which was a plus.

As time went on after college, I began a quest to learn more about myself. I was content with who I was and didn’t want to be any other way. At the same time, I had questions that I needed to find answers for.

I was working at my first full-time job out of college and was doing quite well. However, I noticed myself repeatedly forgetting to do things like fill out my time card. I’d write things down and still forget. I’d been suspecting I had ADHD since I first learned of it at about 12, and now the proof was in the pudding. I went for an assessment, and sure enough, I had hit the nail on the head! I began to take medication and noticed an improvement between that and just being more self-aware.

A few years went by, and I had moved on to working at another agency. Things were going well, and I didn’t really give any more thought to looking for insight. I don’t remember how I came across it, but one day I stumbled upon a blog by someone who had something I remember hearing of in college that sounded an awful lot like “asparagus” to me. If you just thought of Asperger’s, that’s it! I knew it was on the autism spectrum but never had made any connection between it and myself, until now.

The author of the blog referred to herself as an “Aspie.” As I read, I saw myself. Could I be an Aspie, too? I found the author on Facebook and became friends with her. We talked a lot and got to know each other well (Seven years later, we’re still good friends!).

After talking to my new friend and doing a lot of research, I decided to go for an assessment. I went to the same psychologist who had diagnosed me with ADHD, and sure enough, it was confirmed that I was on the autism spectrum. I felt so validated. The pieces finally fit! I actually started my own blog highlighting my diagnosis story, and titled it “The Pieces Fit” to represent my journey.

So how I flew under the radar for so long, I will never know. What I do know is that awareness and knowledge about autism is always developing, as are diagnostic tools. While I sometimes wish I hadn’t flown under the radar for so long, I have faith that everything happens for a reason. I’m autistic and proud.

The Mighty is asking the following: Were you diagnosed with your disease, disability and/or mental illness as an adult? Tell us about the moment you finally got your diagnosis. If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.


5 Ways to Spread Autism Awareness When April Is Over

cameron in a puzzle shirt
My son

As a practitioner and mother of a child diagnosed on the spectrum, the end of April tends to be a bittersweet time for me; it’s when Autism Awareness Month comes to a close. 

April is a time that brings the autism community together through events that raise awareness and money for research. 

April is an opportunity for individuals who are not aware, to learn and open up their eyes to the world that has been blessed by people with autism.

We get 30 days to connect with people who share a commonality and grow awareness.

I love all thirty of those days… Not just because I can get away with putting on multiple shades of blue at one time, sport puzzle piece knee high socks and wear a superman cape (even though I look pretty awesome running errands in that getup).   

I love those days because it gives me the opportunity to continuously educate others about an amazing group of people who are too often misunderstood. 

I love those days because they remind me I’m not alone in this journey and there are thousands of other people walking on the same road with me. 

I have noticed that after April, the drive to spread awareness isn’t as strong; the social media posts, events and marketing of educational material begins to die down. 

Imagine the impact that would be made if awareness was spread with the same drive and dedication the other 11 months out of the year.

Come May I will continue to speak out, share my stories and educate. I will continue to wear my blue and puzzle pieces proud. I encourage others to do the same.

The awareness of autism has come a long way over the past few years, from different research studies to well known events and books that educate our society and support the autism community.

Here are five tips that you can use that can help spread autism awareness through the year:

1. Read

Reading is key! You cannot spread awareness unless you know what autism is. Find material both written by professionals and by people diagnosed on the autism spectrum. Both will give you the perspectives you need to educate and talk about autism.   

2. Use social media

Social media gives us the opportunity to reach out to millions of people in seconds. Creating Facebook pages, blogs and websites that provide factual information about autism are ways to connect with the autism community, for someone from the autism community to receive needed information, as well as insight and for pretty much anyone to learn about what autism is.

3. Attend events

Attend and/or organize autism awareness events or fundraisers. Many events include resource fairs with autism-focused participating organizations. Many of these organizations provide a service or sell a product that benefits the autism community. 

4. Build programs

Participate in or organize mentorship programs. Education is needed for awareness to spread, and starting programs that pair typically developing children with children with autism teaches understanding and acceptance at a young age. 

5. Hang out

What better way is there to learn about autism than to either spend time with someone diagnosed with autism or hear them speak about their own experiences? Even though everyone’s experience is different, it will provide you with so much insight about the daily life of someone on the autism spectrum. 

Choosing to do just one of these makes a difference. It begins to shorten the gap of misunderstanding and begins to build acceptance of some of the most beautiful, unique and smart people. 

I encourage you to use these tips to learn about autism, then use your knowledge to educate others and spread the word all year long.

Follow this journey on NatalieChase.

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Why Can't the World See Autism as a Positive?


Autism is usually not seen as a good thing in this world.

But did you know Israeli army recruits people with autism to do specific jobs, such as find details in maps? I have autism and am proud. I’m not saying there aren’t those tough days where I just want to say, “Why me, God?” but I have a purpose on this planet and have autism for a reason. I see the world differently.

julia on graduation day

Without autistic people, a lot of innovations may not exist — such as Windows computers. It’s been suggested that Bill Gates is on the autism spectrum. I was diagnosed with autism at age 18, and because of my extremely supportive mother finally received that correct diagnosis. Why people don’t want to understand us and help us is beyond me.

I surprise myself sometimes (and laugh a lot) with the things I come up with. Autism is one of the greatest gifts this world has to offer, and society has to see that by learning from people who have autism and live with it every single day.

julia in a field

I am an individual with an exceptionally bright and unique mind; without my autism I do not think I would be such a great artist or have the phenomenal memory that I have. I love being unique and wouldn’t change it for the world. 

The Mighty is asking the following: Were you diagnosed with your disease, disability and/or mental illness as an adult? Tell us about the moment you finally got your diagnosis. If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.


Relief: Receiving an Autism Diagnosis as an Adult


becca lory I’m often asked what it felt like to get an autism diagnosis at age 36. As an active autism advocate, writer and public speaker, when I say often… I mean often.

struggled for a while with how exactly I could describe that moment. One day I realized I was struggling not because I didn’t have an answer, but rather because it wasn’t one single moment. It was a series of moments. There was the moment I first read about autism, the moment I decided to seek a diagnosis, the moment I began my evaluation, the moment I was told the test results, and, most importantly, the moment I first said it aloud about myself. I am autistic. But the one single word that ties all of those moments together is relief. Yes, relief.

I’d been told for as long as I can remember that I was stubborn, lazy, manipulative, overdramatic and mean. At the early age of 5 or 6, I had been to the first of countless psychologists and psychiatrists who would over the years label me as school phobic, social phobic, depressed and anxious. From my early teens on, I had been medicated for everything from panic disorder to manic depression to obsessive-compulsive disorder. Basically, I had spent a lifetime hearing that something was wrong with me and worse, believing to my deepest core that I was broken and unfixable. As soon as I stumbled upon what was then called Asperger syndrome, now Autism Spectrum Disorder (ASD), I knew my life would never be the same. What I didn’t know was how much better it could be. 

I remember the day I read about autism for the first time. I remember the day I began my evaluation. I remember the day I was told I officially belonged on the autism spectrum and I remember the day I first said aloud, “I am autistic.” What I remember about those days is both good and bad. None of it was easy. Yet along with each and every moment of that part of my journey, I evolved, I learned, I grew and I was relieved. 

I was not broken. I was not unfixable. I was not a lost cause. And most of all, I was not alone. 

It turns out there are a lot of us who have survived decades without the skill sets we require, without having our needs addressed, without the proper vocabulary to describe what is happening in our brains and bodies, and without knowing why the world feels so much like an alien planet. But I am one of the lucky ones. I know now. I can adapt to my needs, face my challenges and enjoy my gifts. I even get to share my experiences and educate others about what it is like to process the world through a unique filter. I am part of an incredibly supportive and loving community that we call the spectrum. And it is a relief. Being able to love yourself for exactly who you are is a relief. Having others love you for it too is an even bigger relief.

I am a woman. I am an adult. I am autistic. And I am proud!

The Mighty is asking the following: Were you diagnosed as an adult? Tell us about the moment you finally got your diagnosis. If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.


To Susan Boyle, You Don’t Have to Apologize for Your Meltdown


Dear Susan Boyle,

To have a high public profile where your movements and vulnerabilities are recorded must be so difficult to handle. It was with sadness we read firstly of your meltdown at Heathrow Airport and then later, a report that you felt the need to apologize. A meltdown is the result of an unmet need and can leave us feeling very drained and (unjustified) remorse, embarrassment and upset. This is very different from an outburst, a tantrum, of which we have some level of control to manage and may need to reflect and apologize.

Autistic people live in a world not designed for how we experience it, for the way we relate to others and the way we naturally communicate. Every time we walk outside our door, we make reasonable adjustments for others without autism, who are in the majority. The negative messages we receive are that non-autistic people are the skilled communicators, that they are the ones who have empathy and unfortunately they, as the majority, hold the power to make the decisions to include us and about the policies that affect us. Autistic rights, our way of being, are seldom recognized — often unless we are male children with the voices of non-autistic parents and parent-led charities speaking over us and for us. As you experienced, this world we often collide with has little understanding of autism as it manifests in an adult female form. As a woman with special needs managing these situations alone, it can be frightening.

Many autistic people have been to airports. The bright fluorescent lights that can blind us. The anticipation of where we are going and the change that trip means to our usual routines. The passing through security, requiring undressing of shoes, belts, coats and the brief separation from the electronic gadgets that are our connection to our online communities and peer support networks. The body contact and touch of security people. The anxious wait, checking electronic boards to know which gate our plane will depart from and the inevitable rush of people and their bags to jostle for position in lines. The enclosed space of an airplane and the women who surely must have bathed in perfume from the way it fills our senses and turns our stomachs. The closeness of strange males near us, which for many of us, can be a trigger to incidents from the past.

Susan, you found yourself in a situation where your system was assaulted by an onslaught of stimuli too overwhelming to process and manage alone — a feeling your autistic peers know all too well. For some of us, we silently bear it, we shut down. For some of us, we panic and look for ways to escape. For some of us, we get mouthy, and that is seen to be aggressive and rude.

I hope that the advisors around you understand that an apology as a form of damage control is not warranted. You cannot help the way you are. It is not a choice, it is how we as autistic people are programmed. Buildings and airports and public places do have a choice, they can decide if their spaces will be inclusive of us or not. Your experience has the potential to teach Heathrow Airport to do better by you and by the autistic people that pass through their terminals.

If you feel you need to apologize, I hope you have loving support around you. I hope those people are telling you, you did the best you could do in that moment. That you are OK. That they will help you to identify your own triggers so future distress can be minimized. We live in hope to see examples of the empathy and great communication skills of the non-autistic world while waiting for them to meet us at least half way. Because having autism, and having your needs unmet, is not a reason to write a letter of apology.

Loving support from,

Your friends at Autism Women Matter

The Mighty is asking the following: Share a powerful moment you or a loved one has had with a public figure. Or, write a letter to a public figure who you feel has helped you or a loved one through his or her work. If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

Lead photo source: Wikimedia Commons / Wasforgas


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