Finding Love as an Autistic Adult: What It's Like for Me

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“There’s only one thing you need to know about me. I have no baggage, you know I have no ex husband, no children, but there is one thing you do have to be aware of. If I tell you, and you can’t handle it, then the door is there – you can walk through it now and there’ll be no hard feelings.” I took a deep breath, looked up at the ceiling, blinked back tears and said, “I’m autistic.”

I waited a moment, but he stayed put, didn’t move. There were no words other than, “It’s OK, I’m not going anywhere. It doesn’t make any difference to how I feel about you.”

And that was it. The moment I’d dreaded since we started dating. The time when I had to open up and confess, to let the person I was falling in love with know that life with me would never be plain sailing.

Falling in love was something I never planned to do, and even more so once I was diagnosed with autism. I decided to shut that part of my life down and concentrate on my job and living my life tightly tied to my routines and structure. My dinghy of confidence afloat in the sea of autistic insecurity.

It isn’t easy. I won’t lie. My head tells me I’m useless, that I’m a failure, that I can’t ever give him the life he deserves because I’ll let him down, or won’t be able to do things he might like to do as a couple.

I’ve sometimes found it hard to adjust and accept that my brain doesn’t work the same way his does. It’s hard when you have to say “no” to doing things because you know they’ll take far too many of your “autistic spoons” and not have enough left in the cutlery drawer for the rest of the day or week.

It’s even harder when I see him get on and do what he has to, while I’m mired in a rut of having to talk myself through everything I do in baby steps – even down to getting dressed or making a cup of tea. I don’t do anything on autopilot. Every single action is thought about in so much detail that sometimes, something as simple as brushing my hair can become too overwhelming to think about.

It’s hard having to explain it, and feeling like an absolutely weak waste of space for having to admit so.

After three months, he moved in. Well, he turned up on the doorstep one morning and basically never left. It wasn’t planned. Living with someone wasn’t in my view either. That’s been an eye-opener. Letting someone in and letting them see you at your most vulnerable, including the autistic quirks you can’t hide, is strange. He’s had to deal with things another man might have walked away from. The mess I’d got into with hoarding paperwork, cardboard and other bits of ephemera felt utterly shaming to me, but he took it in his stride and helped me sort it out, despite my bristling and feeling distinctly uncomfortable.

In my world, certain areas are super organized. I have ways and systems of doing things that I can’t change or have anyone tamper with. He lets me get on with it.

One of the hardest aspects is dealing with the fact his job means plans can change very quickly, and what seemed set in stone half an hour ago suddenly isn’t. His work takes him all over the country — sometimes all over the world — and his hours and days are all over the place. I find that difficult to adjust to, and it’s hard not to keep asking constant questions about what he’s going to be up to without feeling like I’m being a neurotic nag. My brain just can’t deal with the uncertainty. But he loves his job and I’ve always told him he should never turn down work for me or for my sake. That would only make me loathe myself more.

Social aspects of being in a relationship are hard. Generally being out and about just the two of us is fine – not without incident, but fine. Going out and socializing with others is trickier. A meal out is considered a joy and a pleasure to most people. To me it’s such a minefield and can be so exhausting that it takes me two days to recover. He has a wonderful family that has taken me under their wing, and have made me feel for the first time in my life, that away from my own family I have somewhere I fit in. What’s upsetting is having to say “no” to doing things with them or having to drastically reduce what we do with them so I don’t get too tired or overwhelmed. Again, it makes me feel like such a baby, especially when I look at his 5-year-old nephew who generally has more energy and stamina than me and I’m 32 years older.

Now another hurdle looms large. A potential house move. And a big one – some 50 miles away from my home town and my family to be closer to his. I worry about how I’ll cope. I already feel the need to stick even more rigidly to my routines in order to survive. I worry that the anxiety I feel will show through even more and put him off. I worry I won’t be able to settle, that I’ll feel trapped. I worry I’ll run away and let him down. I worry he’ll see me totally shut down and he’ll reconsider our future. But the biggest part of me feels loved – properly – for the first time. It can’t conquer everything, but it might help.

I never thought I’d find love. I never thought I was worthy of it because I felt I was too damaged. Being diagnosed with autism at 36 was an eye-opener. Falling in love for the first time has finally made me blink.

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5 Things Autistic Adults Have Taught Me About Parenting My Daughter

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As a parent to an 8-year-old girl we’ve had our share of frustrations, cross words and clashes. We also have a strong bond, a close relationship and enjoy each other’s company. Obviously, I love her more than words can say and am beyond proud of her.

I’ve noticed, however, that traditional parenting techniques are not always successful with her. Being “strong willed” is one of the many positive traits she seems to have inherited from me, but there is more to it.  I’m neurotypical and she’s autistic. I’m conscious I don’t always respond to her the way she needs.

In an effort to gain some insight into what I could do to improve my parenting, I turned to autistic adults on Facebook and asked, “What is one thing you wish your parents had known when you were growing up?”

This is what I learned:

1) RECOGNIZE her.

Acknowledging she’s autistic is the first and most powerful message that came across. To accept her for who she really is, “Chances are she already knows she’s different.” Giving it a name and recognizing it can be empowering for her. Acknowledging her for who she is is vital.

Calling it something isn’t enough though – it’s also about recognizing what it means for her:

• She might be naïve, trusting and potentially vulnerable and will need love and protection even though she may not ask for it, or even if it appears like she doesn’t.
Autistic inertia* is a real thing, she’s not being lazy. Procrastination can stem from a “significant emotional barrier” and I need to be aware of times when she might be struggling.
• She might need recovery time.
• “Some kids need help making friends, some just don’t care.” She may not want to socialize and that’s OK, but if she does, she might need to be guided.
• Her perception of reality might be different.
• Her sensory needs, desires and routine might be different from mine.
• She might be externally motivated; visual instruction and physical reward might be more effective than verbal instruction or verbal praise.
• Confidence can help her work hard and achieve great things.
• She might be different and there should be no “pressure to be normal.”

Something else that came up was, “don’t be embarrassed to have a child who is different.” Whether we mean to or not, I think sometimes as parents we change our approach based on what setting we’re in, and that’s often driven by the fear of what others might think. This has taught me to try not to care what others think (I will add that I have never been and will never be embarrassed by having a child who is different).

2) RESPECT her struggles as legitimate and real. 

• Transitioning is hard. She might need more time to allow her to switch activities.
• Crying could be her way of saying she needs something but doesn’t have the words to explain, no matter her age.
• Interpreting things could be hard for her, even praise. She may not be able to tell if I’m sincere, so I could incorporate actions as well as words to show her what I mean. “Model rather than order” if you will.
• She might need alone time. She might need and want time in her room, and I should not force her to socialize.
• Respect her sensory issues – her reactions are involuntary. For example, if she gags at food or a smell, it is involuntary. She’s not “being dramatic” or “difficult.”

One woman explained she wanted her caretakers to understand that she wasn’t “highly strung” as they called her. In fact, she was “baffled by life and society itself.”Truly humbling to hear those words as someone who is neurotypical.

3) TEACH her everything, don’t make assumptions that she will just “pick things up.”

• She might do her best but she might still want my help and guidance even though she may not ask for it, she may even actively fight against it.
• I need to teach her life skills.
• She might need to be taught how to do things from wiping a table effectively to how to tidy up and organize.
• I might have to break down every activity into smaller steps to teach her how they connect to each other – like breaking down dance moves to learn an entire routine.
• If she appears “high-strung” she might be struggling to understand something.
• I should avoid using sarcasm, rhetoric or hyperbole.
• I should encourage and nurture what she is good at.
• I should encourage her to take responsibility.
• I need to show her that she’s valuable and perfect as she is and there is nothing wrong in being different.

4) Be AVAILABLE to her.

• I need to show her my unflinching love and support.
• I must be patient and allow her time to fully process information.
• I need to be forgiving.
• I need to understand that when she questions me or things, she isn’t being obstinate, she might just need answers.
• I need to show her I’m listening and really hearing her.
• I need to tell her “I am sorry” when I get it wrong.

5) LEARN together. 

• She doesn’t need to be forced into neurotypical behaviours.
• I shouldn’t compare her to her peers, and neither should she.
• Angry outbursts could be a result of not providing the steps previously mentioned.
Anxiety is a bully that might overwhelm her and one that she might need to learn to control.
• Her facial expressions might not match her inner emotions.
• I must watch, listen and learn about who she is and not make assumptions.
• Find ways to deal with my frustration. In the words of one person, “I wasn’t trying to destroy my parents’ happiness.”

As a family we already know and do some of these things. We are on the right track and mindful of doing our best. But there are things we need to remind ourselves and work harder on. Much harder.

Having neurodiversity in a family can be fabulous and challenging in equal measure for all of us. We won’t get it right all the time, but I hope having the intention and motivation to at least try our best is good enough. Then we can hope that ultimately, her happiness will come from being her true self.

With thanks to the Autistic Women’s Association and other Facebook users who answered the question.

*Autistic inertia is a state of wanting or needing to do something, but being completely unable to do it.

Follow this journey at H2Au.

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Everything I Thought I Knew Before My Autism Diagnosis Was Wrong

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What I Mean When I Tell You My Daughter Is Autistic

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I want the world to become more educated about neurodiversity. Knowing people with autism diagnoses means understanding can come more easily to us all. So if I come straight out and say “my daughter’s on the spectrum,” that means “check your judgment.” It means “resist assumptions.”

It can be hard to distinguish my daughter from neurotypical kids her age. I get that. It probably comes as a surprise when I say it. But when I tell you my daughter has been given an autism diagnosis, what I’m really saying is this: when she does something you don’t expect, choose compassion over judgment.

If she doesn’t want to give you a high-five or a smile when she greets you, don’t assume she’s impolite. If she walks away from you when you’re talking to her, don’t assume she’s ignoring you on purpose.

If she gets upset when you don’t want to do things exactly her way, every single time, repetitively and consistently for hours or days on end, know that it’s something that can come with her autism.

If she shuts down and retreats in the middle of a play session with your kid, it might be because the rules of a game suddenly got changed. Or it could be that the conversation and activity is happening too fast to process.

If she can’t come to your child’s birthday party because there might be strangers there and too much noise and food that smells bad, don’t assume she doesn’t want to be there. She does. She wants so badly to come, I promise.

If she doesn’t get excited about things or doesn’t think things are funny, take it as a compliment that she’s showing you how she really feels. She’s not faking it. She’s not pretending to care or laugh. Showing that side of herself to you means she trusts you.

As her parents, we were relieved when we got the diagnosis. Finally someone could tell us that her behaviors come from a particular place. There’s a reason and a purpose for them.

Getting the diagnosis enabled us to look at her behaviors completely differently. Instead of being angry and frustrated, we worked harder to understand her triggers so we could teach her to cope.

Telling you about her diagnosis means that you can understand and identify what you see in her, too. She’s not a “brat.” She’s not “weird.” And we’re not ashamed.

She is part of the fascinating world of neurodivergence, and we will always expect you to honor her humanity.

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3 Things to Know About Autism, From the Parent of a Child on the Spectrum

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“Make America great again” is a refrain that echoes through the collective American consciousness. I find myself wondering what will be the defining moment(s) or policies that will return America to her glory? How will we know when America is great, again? What does that look like, feel like, sound like?

President Trump spoke of empowering the American people in his inauguration speech, saying: “Today’s ceremony, however, has very special meaning. Because today we are not merely transferring power from one administration to another or from one party to another. But we are transferring power from Washington, D.C., and giving it back to you, the people.”

Does this mean that America will be great when the will of the people guides the policies that shape our national agenda?

Some pages of the White House website have been removed since President Trump was inaugurated, including the disability section. If the pages were simply being updated, what is the harm in leaving the old ones up until such a time the new information is available? Is part of making American great again, limiting access to information?

As a parent of a child with nonverbal autism, I am most concerned with what I believe to be his lack of understanding of autism. Throughout the course of his campaign and in the early days of his presidency, President Trump has made numerous mentions of autism that in my opinion reflect a lack of understanding of the disorder. I believe he is spreading misinformation that is perpetuating stereotypes and misnomers about autism.

These are a few things I’d like everyone to know about autism.

1. A popular quote in the autism community frequently attributed to Stephen Shore is, “If you know one person with autism, you know one person with autism.” Some people with autism live independent lives, whereas others require more support. Similarly, some people with autism face additional challenges like learning differences or medical co-conditions (GI problems, chronic insomnia). It is important to recognize that autism is a spectrum disorder and affects each person differently; therefore, one should take care not to make over-generalizations about what autism is and is not.

2. Autism diagnoses are increasing, but there can be many reasons for this. According to a CBS News article, “the CDC said the rapid increase was likely a product of the change in diagnosis and the expansion of what was considered part of the autism spectrum, in addition to unknown causes that research may yet uncover.” No one knows the exact the cause of autism; however, there is consensus among the medical community that immunizations are not the cause.

3. Autism can bring challenges, but it is also beautiful. I firmly believe my daughter would not the person she is, the person I love dearly, if she didn’t have autism.

Editor’s note: This story reflects an individual’s experience and is not an endorsement from The Mighty. We believe in sharing a variety of perspectives from our community.

Follow this journey on Kacie’s blog.

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How My Son on the Autism Spectrum Is Using His Voice in His Own Way

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My son Leo clutches his hands tightly beneath his chest, his gaze alternating between me and the television screen, his expression seems steadfast and intent on communicating.

His brain knows what he wants, yet he struggles to put words together to tell me.

“What do you want, baby?” I ask. “What movie?”

I prepare to run through his list of favorites, hoping I’ll stumble upon the film he’s seeking. I hope upon hearing the title he wants, he will try to imitate the sound using his sweet voice, or that I’ll be able to gauge from Leo’s visual cues which movie he wants to see.

Boy standing in living room in front of TV with the movie "Finding Dory" on

Before I can utter a sound, my boy, with fierce determination blurts out, “Nemo, fish, duck, Dory!”

“You want Dory?” I ask, my heart swelling with pride and a deep sense of affirmation that connections are being made.

While he might not know the title of his new favorite film, “Finding Dory,” Leo problem-solved. He used language he knows connected to the film to express what he wants.

He communicated.

“Nemo, fish, duck, Dory,” is currently Leo’s new go-to phrase for requesting the movie he adores — as is “Woody fly in the sky,” for “Toy Story,” and “Monster,” for “Monster’s Inc.” And just recently, we figured out that his requests for “House” was a request for the Pixar film, “Up.”

My boy, who has been described in many recent evaluations as primarily nonverbal, continues to prove what he is capable of.

By fostering, supporting and encouraging the things that bring him joy, his passions continue to be an avenue for progress and growth.

And just like Dory, Leo will do these things in his own time, and in his own unique and special way.

Follow this journey at Life With Leo.

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