Why My Autistic Mum Is the Best Parent I Could Ever Hope For

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Last week my state had the “Woman of the Year” awards. It was a great honor to be at the awards ceremony as a finalist. I was nominated due to the work I do around autism advocacy in the local and wider community. There were politicians and notable people in attendance. I was accompanied by two friends and the most important person in my life, my mum.

My mum was delighted to share the awards night with me, but her parental pride might have a darker origin than that of many parents. My teen years and 20s were hell for my family. I made poor choices over and over again and was incredibly self-destructive. At times, I lost contact with my parents and they assumed I had died.

My mum gained her own autism diagnosis just a few years ago as an older adult. My mum’s diagnosis helped both of us understand our own lives and our relationship as mother and daughter.

When I was about 5, I went to a therapist because I was aggressive at school. I struggled with change and the unpredictability of other kids, so I responded by hitting as I didn’t know what else to do. My understanding (which may be wrong — I was 5 after all), was that the therapist suggested to my mum that maybe I was an atypical autistic person. I don’t believe this was investigated any further. I don’t quite know the reasoning but in the 1970s the prevailing view from clinicians was that autism was caused by cold-hearted “refrigerator mothers.” I can imagine how my mum wanted to steer clear of that accusation. I feel we were a quirky family but largely happy when I was little, but my parents’ unconventional parenting style was viewed dimly by those judgmental types who think it’s OK to give unhelpful and unsolicited advice to people.

In fact, I don’t believe there was much reason to judge my parents. They did some things well, others not so well and they did the best they could — like many other parents do. When I was a troubled teenager, I remember talking to my mum almost every day while she was ironing. No topic was barred. I could say or ask anything of my mum and she would respond with a loving, respectful answer. She was there for me even in the darkest places, when I was a prisoner both in the physical and emotional sense. She never let go of me and she never stopped loving me, even when it must have been difficult. Her love has always been this tangible thing, like another character in our shared story.

As I have changed my life over the past 17 years and gone from desperate to respected, my mum and her love have been there at every step.

In conventional terms, my mum is probably an atypical parent. She did a lot of things some people might think were a little odd — we used the same piece of plastic wrap on our sandwiches at school all week because of my mum’s respect for the environment, and if I was sad she would read to me from the Book of Revelation in the Bible. But she was the best mum and we were quirky and different together — as we still are.

Having my mum in the audience at the awards night last week was pretty special for us both. I kept wishing people from the past who criticized her would come up and say she must in fact be a great mum to raise a finalist for “Woman of the Year.” I didn’t win the award, but I got a bigger prize through my mum being there, and both of us getting to enjoy our respective successes.

Jeanette Purkis and her mum at the Woman of the Year awards

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Beads made out red and blue play-doh stringed with a yellow shoe lace

'Mommy Therapy' With My Son on the Autism Spectrum

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Like some autistic kids, my son has poor fine motor skills which affect his everyday life. Getting into occupational therapy (OT) has been nothing short of a feat. It is not unusual to be placed in a three-to six-month waiting list. In my experience once you get in, you often get an hour a week and if your stars are aligned right, maybe twice a week. Then comes insurance which, in our case, believes my child does not really need this therapy. If I convince them he does, I get covered for maybe 12 to 15 sessions a year. So, in between the waiting, the long gaps between sessions, the power play with insurance and the rest, I was left with a lot of time in my hands. I decided to use this time for therapies we could do at home.

This is a list of activities that have worked for my son. I’ve seen real success and these are easy to set up — and fun, too.

Lacing beads :

Beads made out red and blue play-doh stringed with a yellow shoe lace

What you need — (option 1) pipe cleaner, Cheerios  (option 2) Play-Doh, shoe lace

The activity — This helps with the pincer grasp and with hand-eye coordination. All you need to do is help your child push Cheerios onto a pipe cleaner. Several websites, instead of using a pipe cleaner, suggest using raw spaghetti propped on a ball of Play-Doh, but my son likes to fiddle and the pasta breaks. Pipe cleaners work better for us. Once my son mastered this, we moved on to a more challenging lacing exercise. I made beads out of Play-Doh (grape size balls and I poked holes with a skewer). I let them dry overnight. I use a shoe lace with a knot tied at one end to stop the beads from falling out and then I help my son lace the beads through. It took some sessions of frustration but he eventually got it. Now he’s a pro.

Make it fun — To make this task more interesting, you can use multicolored Fruit Loops and make bracelets out of it. The shoe lace with chunky Play-Doh beads looks like a tribal neck-piece, which is a great incentive for my son to work for.

Using tweezers:

A small green bowl and a large tan bowl, both with popcorn. A pair of orange tongs sits in the tan bowl.

What you need — tweezers/tongs/straws, popcorn

The activity — Chances are you have a pair of tweezers at home. Put some popcorn in a bowl and help your child serve each of you a small portion using the tweezers. For those who don’t have tweezers, a straw bent at the middle works just fine. However, when you switch to picking heavier stuff than popcorn, you might consider getting one of those kids tongs for this exercise.

Make it fun — Set a timer and race against each other for who gets the most popcorn.

Paper crumple:

A clear trash can with crumpled paper inside and outside

What you need — Old magazines, trash can

The activity — This is another fun activity. Grab a few old magazines. Sit next to your child and place a trash can in front of you, not too far. Take turns ripping off paper from the magazine, crumpling it into a ball, and throwing it into the can. This activity has three components: tearing, which requires finger manipulation; crumpling paper into a tight ball, which increases hand strength; aiming at the basket, which is a good hand-eye coordination exercise. Also, tearing paper is a precursor to acquiring skills for many daily activities like writing, opening sealed bags, or shredding pieces of food.

Make it fun — Start a two-person match and keep score of who makes more baskets.

Sponge squeeze:

a clear bowl with water and a blue sponge inside, next to it is a clear cup with a small amount of water

What you need — clean sponge, water, cup

The activity — This is another hand strengthening exercise that my son loves, especially because it involves water. Soak a sponge in water and let your child squeeze the water out into a cup or bowl.

Make it fun — Bring out a few bowls of water and add food coloring. Set up a fake slush or juice bar by squeezing the colored water in different glasses.

Coin bank:

Quaker oatmeal box laying on its side with slits and coins on the top

What you need — cereal/shoe box, coins

The activity — My son loved going to Chuck E. Cheese’s and needed our help every time he had to insert tokens. That’s when we realized how important it was to work on this skill. Take a cereal box, (I used a Quaker’s oatmeal box) and make a small vertical slit on one side, and a horizontal one on the other side (big enough for a coin to go through). I began this activity by placing the box so the slit was on top, switching between dropping the coin through the vertical and a horizontal slits. Since it’s easier to push through a slit that’s on top rather than on the side, I waited until he mastered the top slits before moving on. I then flipped the box so that the slit faced the side. This one took some time to master but my son is now an expert — if he is paying attention.

To make things more challenging, you can let your child pick up the coins on his own. Once they’ve mastered this skill, add another level of challenge by giving them a couple of coins in their hands and letting them use the same hand to push the coins into the slit. Both of these options will encourage in-hand manipulation skills.

Make it fun — Create a play zone for your kid with his favorite toys lined up. Allocate different coin counts for each toy. Let your child “deposit” coins in the box for any toy he wants to play with.

Pipe cleaner & colander:

red colander with wooden skewers

What you need — colander, pipe cleaners, bamboo skewers

The activity — This one is similar to lacing beads. Turn a colander upside down and help your child insert pipe cleaners through its holes. You could then move on to bamboo skewers. Try selecting skewers that fit snugly through the colander holes. I find these more challenging because they require a little more strength to push through the holes and it helps with hand strength. Pulling these skewers out is just as challenging because my son needs to hold down the colander and then pull out the skewers. It really helps with his motor strengthening skills.

Make it fun — Once you have all the pipe cleaners in the colander, loop those back into another hole or twist those around in different shapes and make funny hats out of the colander. You could make porcupines out of the bamboo skewers too but be careful, they are prickly.

There are several other games that have helped my son acquire the fine motor skills he struggles with. Everyday activities present us with several opportunities to do so. Besides, they provide a meaningful goal for an activity rather than just sitting at a table and doing a list of tasks.

Some other activities we do:

Peeling fruit (like oranges and bananas) for finger manipulation.

Pouring water or juice in glasses for hand-eye coordination.

Help carry groceries for motor exercise (and some kids feel proud helping mom or dad).

Whisking an egg or a batch of cookies, for hand exercise.

You could store a favorite treat in a container with a screw-on lid and when your child asks for one, have them open the container on their own.

If they ask for a candy, ask them to unwrap it or open that M&M bag themselves. I’ve found that motivation is a big driving force for learning.

Get a wind up toy your child likes and watch them build their hand manipulation skills as they crank it up.

When a package arrives, don’t throw the bubble wrap away. Have fun popping them with your child.

Last week I needed a lot of butter for something I was cooking and I asked my son to unwrap all the butter sticks for me. He struggled initially and got a little frustrated but we finally worked our way through all 16 sticks. By the time we finished, he was already unwrapping on his own.

In my personal experience, making an activity fun and purposeful is an important factor in learning. Our homes are filled with opportunities to teach and to learn. Sometimes it requires thinking outside the box a little. Also, I’ve experienced the more chances I give my son to do chores around the house, the more skills he acquires. In spite of his challenges, I try to give him as much independence as I can for him to learn and grow.

Have fun being a “mommy therapist.”

Editor’s note: This story is based on an individual’s experience and should not be considered medical advice. Please consult a doctor or medical professional for any questions.

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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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Illustration of mother and daughter holding hands on a walk

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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