Parenting with Autism

I added this to momberry as this is a question more specific to moms though anybody can answer! I’m a teen berry but I’m autistic and was wondering about everybody’s experience with having autistic children or being a autistic child with their own experience! This is more of a safe space to just share a experience not many know about and too future moms or just mothers with children a outlet to talk and ask!

Autism is a spectrum so not everything will be the same, but with parenting being an often discussion on this site, I thought it be important to talk and share about our experiences or just have some outlet to discuss what is often not made aware or just insecurities about parenting and difficulties!

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Not autistic and not an autistic Mom so probably know FAR less than you and [name_f]Penelope[/name_f]! Also my bro is in his mid-late thirties now so I imagine things have changed significantly… but I have a brother with ("high-functioning”) autism, and I’m pretty sure my father did also although he was never diagnosed. Mum (neuro-typical) took on most of the day-to-day parenting load.

There were lots of challenges for my brother and parents. They put a soft little helmet on him when he was little as he kept managing to whack his head on furniture! Faced incorrect diagnosis/judgement e.g. being told to only bother teaching him basic self-care skills - he might have been 11 before he got a proper diagnosis from [name_u]Tony[/name_u] [name_u]Atwood[/name_u]. Difficulties with accommodating food and smell sensory issues - made dinners tricky.

HORRIBLE time at school. Bullying and friendship issues, teachers who didn’t know how to cope with him being a bit different and thought he was misbehaving, even highschool teachers AFTER his diagnosis who were sticklers for ‘rules’ and would insist that he copy every science experiment out in his book like the rest of the class BEFORE getting to take part in any of the science experiements. His difficulty with fine motor skills and very slow handwriting meant he never got to take part in the science, which is so incredibly unfair (and he would have been very good at it!). I remember a swim school teacher losing the plot at him too and Mum withdrawing us all from swimming lessons. I REALLY hope things are very different now, and as a teacher myself, primary school at least (and the swim instructors we see) do seem much much better. But I think it can still be pretty tricky for high-functioning kids with no diagnosis… within our school we might know/accept, but if a parent suddenly changes schools on us… will the next school understand this child?

We also had some difficulties in my family at times with the autistic vs the more neuro-typical… a grandparent who couldn’t understand accept my brother’s germ-phobia and dislike of all body words like brain (due to being so visual) and would refuse to be accommodating. As a teen struggling to fit in myself I sometimes found my brother (and NT but shameless Mum) really embarrassing. I also found the germ and body-word thing very tricky myself at times, especially coming back after my first year at university. I’d gotten used to being able to speak freely again and wanted to badly to talk about the things I’d learned in my biology classes, and also the combo of my Dad’s autistic behaviour involving collecting loads of books and bits of paper (with notes on genealogy and spirituality and [name_m]Shakespeare[/name_m] authorship) and my hayfever and my brother’s germ-phobia was a nightmare. I was sneezing like crazy. [name_f]My[/name_f] brother got upset if I sneezed. [name_f]My[/name_f] Dad threatened to call the police on me when I tried to move his piles of books and papers tp vacuum… oh the joys of families!

This all sounds really negative sorry! There were also huge positives. I had a father who wasn’t afraid to be himself, very different to other Dads, and helped teach me that it’s okay to be yourself (while exposing me to some awesome history and academics and deep thinking along the way). I’ve got a brother who is super kind, generous, and creative, and an amazing uncle to my daughter. I really do wish he’d had a better experience at school though.

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@jonquils I always had the same thoughts run through my mind, it starts with the idea that I can never be loved with a condition that brings so many set backs, and always continues with aspects such as marriage, family, kids? I always remind myself, and remind you too that our ‘quirks’ are part of us not negative set backs, sometimes I feel so overwhelmed that the idea of children seems almost too impossible, I do something so me that later on, on days were I do think of children I become wary and don’t even see it in my future, my lack of conventionality makes me feel I can’t be a conventional mother but I think that’s were I found my problem, there’s nothing wrong with adjustments and unconventionality in motherhood, for now at least, I settle with knowing there’s quirks that though hard to overcome and adjust, can be improved and added to my future unconventional motherhood :slight_smile:

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School was always a struggle for me too. [name_f]My[/name_f] family often moved and so that was traumatic in a sense that it wasn’t always often known and I had to unfortunately mask! I do hope there’s better accommodations but as I’m still in school and much older now I can say it’s not there yet! At the very least harder when your masking! I got diagnosed early on in life (age 4) and it was always hard for my parents, they had four other kids, two much younger, and were immigrants in an unknown country, for me it wasn’t always the greatest given what they had to sacrifice (as in my needs and specific care), I had a very unconventional childhood and had to really teach myself and get accustomed to my diagnosis and what that entailed, it was hard doing this alone with parents (that unfortunately wanted to ignore it rather than address it) and not so understanding sibling

As a sibling with someone autistic your allowed space here, I think experience with dealing with someone and growing up with them is just as valid given that I myself don’t know the perspective, nor the struggle in itself to have to be the one to witness every break down every unconventionality and unfairness! You stayed strong for yourself and your brother, I think that’s a big applause given how thats not always the case nor easy :heart::heart:

Im not autistic myself, but my dad is, so im hoping maybe I can provide some insight as to what its like to be parented by somebody with autism :slight_smile:

First of all, my dad is awesome, I love him very, very much. He is a good guy, and a great dad, I couldn’t ask for anything more.

Second of all:

I wanted to talk about this!
Awhile ago my dad spoke to me and my sisters about his experiences with autism, and how he felt it affected his parenting.
One thing he said to us was “I never felt like I was good enough because I couldn’t handle giving you kisses”, and it really got me thinking.

You could say my dad wasnt really ‘conventionally’ affectionate to me as a child, because he wouldn’t give me goodnight kisses, or hugs before school, etc. When I was younger I didn’t really understand why he had an aversion to those things, but it never bothered me.

Mainly because I never felt as if he wasn’t affectionate with me and my sisters, he just showed it in different ways.
To me, affection looked like making our favourite sandwiches for lunch (always, ‘with love’), it looked like sitting on the edge of the bed as we said our goodnight prayers, it looked like peeling potatoes with us when we are upset, it looked like waking up to a fresh pastry on the kitchen counter, and it looked like going on roadtrips to our ‘special beach’ during the summer and daring each other to jump of the bridge.

I dont need him to hold my hand to know that he loves me, he has other ways to show me, and it is equally as special as a hug or a kiss. I never felt like I was missing out on anything, or as if he was ‘failing’ me in any way, and you would not be failing your children in the slightest either.

Also, when in public he would just have us walk in front of him, always. That way he knew where we were and he didnt have to hold our hands.

I have learnt alot from my dad, how to be patient, how to listen to my feelings, how to take time for myself, and how to be kind to others.
Never have I felt that his autism meant he was lacking as a parent in any way.

Anyways, sorry if this is super long or doesnt really make any sense, I think im just missing my dad a little bit extra today (he lives in another state)
I wish you guys all the best :heartbeat::heartbeat:

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Hi. I parent a child with SPD. Sensory processing disorder which is on the autistic spectrum. So not sure if this is the space for me to discuss?
With my eldest he likes plenty of one on one time. He is quick to anger and he can sometimes be sensory seeking or sensory avoidant. Sensory seeking behaviours include jumping flights of stairs and rubbing ice on his gums. Sensory avoidant days include not being able to cope with noise or his younger brother in his space. He also constantly puts things in his mouth as way of self soothing or to alleviate anxiety. He also has a pain threshold he doesn’t notice when he has hurt himself and he also doesn’t feel the cold and has to have hotter than normal baths.
[name_f]My[/name_f] parenting towards my eldest is very calm. I explain everything in a very practical, literal sense in order for him to grasp or make sense of something. He is very academically bright and perceptive. He is very attached to me and as his primary care giver ( daddy works away all week). As the person he trusts most in the world I respect that bond we have and have to really show immense patience. Usually, if I feel like something is about to trigger an emotional outburst I always try to appeal to his rational part of his brain, this is to coax him away from his inner ‘emotional turmoil’
He is impulsive and moody but loyal, loving and very special. I wouldn’t change him for the world. I know he is exactly where he needs to be. When he is older I know he will question everything even more so societal injustice and cruelty. He is not a straightforward kind of kid. He is an amazing vibrant and complex soul.

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@Artemis31of course there’s space for you :slight_smile::heartbeat: your son is lovely! I was the same when it came to sensory overload! I do know it gets much harder as they enter school and get older! But with a patience and understanding I don’t see a problem! Your doing good it makes my heart warm to know there’s understanding!

Thank you so much. To be honest I am always trying to learn and adapt. Is there anything which helps you when you feel overloaded in your environment. Usually I take him out of the environment to a calmer one. And is being quick to anger usually a sign of overload too? I’ve done so much reading on the subject but I have yet to actually hear or meet an adult/teen or even another child with sensory issues !
Also he started school last year. He was doing so well then England went into lock down. He is back at school now but man the adjustment was so hard for him and his behaviour was really out of wack.

Do you struggle with transitions? He hates when he has to transition from one environment to another

Hopefully I’ll address everything to the best of my ability! So here goes, hope I helped!

Sensory Overload is very common among children on the autistic spectrum! As a child it was always loud noises and smells for me! Taking him to a calmer environment is 100% recommended so your doing a good job there! What I found helpful as a child was being in a stable position (as in sitting down whether that was on a ground or chair) as stuff got so overwhelming I often found myself exhausted right after

Having one main focus point (something to focus on on situations that I couldn’t escape) along with key words that I used with my mom ex: when I got overwhelmed at a party I would tap my moms shoulder as emphasize that I felt overwhelmed and from there we left without a word as sometimes having the exchange at the moment made me feel that I was ruining the fun for everybody else and made me a problem! Anger for me was a sign that I was often overwhelmed or stressed and for children on the spectrum often that anger is more severe as it is harder to process the quick emotions that come with it, I take pills to help with my anger but I recommend working on a safer outlet and finding ways to make it less explosive (breathing tricks do the thing for me!)

In terms of his behavior with the start of online school, your concerns are valid, change is very hard on us, I know just going to a new restaurant causes my anxiety to flare and in general as a child I would often hate change as I grew so accustom to a specific schedule that when anything disturbed it did become challenging and upset me, my suggestion is to try to have some familiarity at the start until he grows accustom and makes it part of his schedule, transitioning is hard and often doing it with someone else lessons the difficulty! If you fear he’s struggling I suggest helping him, if they are unable to adjust by themselves often it can become something of avoidance later on in life when they become much older

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My husband had to raise his younger brother who had Autism and now that he’s grown and away from home, he does not want to ever have children because of the experience. I don’t want children either because of having to care for a mentally ill brother, so it works out for both of us.

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Thanks so much for all of that. I really appreciate it. It’s so good hearing this from an adult as it sometimes hard to ascertain what’s wrong from a 5 year old. They can’t always vocalise.

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Hi! Not technically on the spectrum but recently came to the conclusion with my therapist that I’m adjacent and have BSP (broad spectrum phenotype traits). [name_f]My[/name_f] mom is undiagnosed but checks all of the boxes for clinical diagnosis and I’ve struggled all my life with a lot of the social and repetitive behaviors. I was misdiagnosed with adhd/add (common for women).

I’m lucky that my moms sensory issues were mostly rooted in fabric/food textures and sounds. She ended up going on to work with children in special [name_m]Ed[/name_m] when I was in 2nd or 3rd grade so I had exposure and education super early on. She always worried she’d not be able to handle it. But now she says it’s the best part of her life. She had to learn how to look people in the eyes and get more acclimated with firm touches (hugs etc.). For her she didn’t have a name for it so it took a lot of work and exposure for her. I know that’s not possible for everyone and that’s still okay!! I couldn’t agree more with @gracegillian.

My best friend also recently got a late ASD diagnosis and we talk a lot about having children (we’re early/mid twenties and in long term relationship 3-5 years. She’s engaged!). I know for me the biggest thing will be being away of early signs because all the matters to me is making sure any child I have has support and help if/when they need it. [name_f]My[/name_f] best friend talks all the time about how life changing it would’ve been to have had support from an early age instead of finding out as an adult.

Having a higher prevalence of BSP my likelihood of having a child on the spectrum is higher than [name_m]Nero[/name_m] typicals.

I guess just remember not all kids love or need hugs and touches to feel loved. [name_f]My[/name_f] fond memories are of playing outside or baking cookies with my mom. I didn’t like be held as a baby and wasn’t fond of light touches. Hugs helped with anxiety for me (have had it since I was in elementary school) but there’s so many approaches to parenting. If you have the love an the will to be a parent I think you’ll kick a**!!!

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