What Is The Hardest Part Of Being Autistic And A Parent?

DepictDave

Active member
I personally struggle to do what my wife calls "picking your battles". I've got 2 toddlers and my autistic brain struggles to let go of the right or wrong way to do things when they're playing up. I need to learn how to balance whether it's worth arguing my point or whether it'd be better just to give them what they want to give myself an easier life. I struggle to come up with specific examples but hopefully you get the idea. It maybe doesn't help that we think my son could potentially be autistic.

Have we got any autistic parents here? What do you think is the hardest part of being a parent and also autistic?
 

Willow

New member
Hi, I'm new to the forum, and have 2 children (one is autistic.) I am on a long NHS waiting list to find out whether I have Asperger's syndrome, but I had no idea I might be autistic until after my children were born.
My biggest fear, with or without a diagnosis, has been that I might somehow mess up their lives. I'm forever reading books and reading articles about parenting and analysing my actions, but find it hard to be sure I am doing the right things. I've been struggling with anxiety and had to give up work because of stress, which hasn't exactly helped. If I had known I might be autistic before I had them, I might never have chosen to have children because I would have assumed I wouldn't be any good at it, but here I am, and I love them and can't imagine them not existing now. I want to do the best I can.
My husband took years to accept my son's diagnosis, and doesn't accept that I might be autistic, so I can't really talk to him about it, (although he is kind enough in most other ways).
I am hoping that if I do get a diagnosis that some sort of extra support might be available, but it feels like a long haul right now.
 
I was diagnosed late in life only after my elder daughter was diagnosed. So I didn't need to weights the pros and cons of having a child. I progressed in stages in my life, at some stage I decided I was ready to get married and have children. I didn't read tons of books because I found it difficult to keep it all in my head and implement all that advice, it was making me stressed and anxious. I just followed my intuition. Of course I was always trying to do my best, be a really good mother and avoid all the things that I thought could be improved from my parent's example. I think in spite of challenges, my (I guess) autistic parents were the best and only parents for me an I am the best and only mother to my daughters. Nobody could do more for your children that yourself, especially with the insider understanding of autism. There is no advantage in internalising ableist stereotypes about autism and second guess yourself. I think being autistic gives an advantage of understanding and empathy for autistic children.
 

Margot

Administrator
Hi Willow, welcome to the forum.
I completely relate to striving to be the best parent as Rosa said. I think support from other autistic people is important in keeping positive self identity.
 

Willow

New member
I was diagnosed late in life only after my elder daughter was diagnosed. So I didn't need to weights the pros and cons of having a child. I progressed in stages in my life, at some stage I decided I was ready to get married and have children. I didn't read tons of books because I found it difficult to keep it all in my head and implement all that advice, it was making me stressed and anxious. I just followed my intuition. Of course I was always trying to do my best, be a really good mother and avoid all the things that I thought could be improved from my parent's example. I think in spite of challenges, my (I guess) autistic parents were the best and only parents for me an I am the best and only mother to my daughters. Nobody could do more for your children that yourself, especially with the insider understanding of autism. There is no advantage in internalising ableist stereotypes about autism and second guess yourself. I think being autistic gives an advantage of understanding and empathy for autistic children.
Thank you, Rosapurple. I hadn't thought that reading the books might be more of a hindrance than a help, you're right that it's difficult to keep everything in mind.
 

DepictDave

Active member
I didn't read tons of books because I found it difficult to keep it all in my head and implement all that advice, it was making me stressed and anxious. I just followed my intuition.

I really relate to this. I struggle to let things sink in when I'm reading lots so I like to mostly learn by doing, and occasionally in a combination of reading and listening.
 

Dimecore

New member
I personally struggle to do what my wife calls "picking your battles". I've got 2 toddlers and my autistic brain struggles to let go of the right or wrong way to do things when they're playing up. I need to learn how to balance whether it's worth arguing my point or whether it'd be better just to give them what they want to give myself an easier life. I struggle to come up with specific examples but hopefully you get the idea. It maybe doesn't help that we think my son could potentially be autistic.

Have we got any autistic parents here? What do you think is the hardest part of being a parent and also autistic?
The hardest part for me is that I'm always worried about what to do, my head just goes blank when it comes to planning activities or what to play with or where to go and it is really stressful and frustrating because I know I should be doing somthing but have no idea what, like a friend suggested a day at the zoo a while back but I dont think I could do that on my own I get stressed about driving especially to strange places and I get stressed when surrounded by strangers and I really want to do better for my daughter but I just cant help it. I was stressed recently and needed a short break so I told my ex about it in Hope's of a short term solution, now shes stopped contact and says I'm unstable and it's no good for our daughter even though she acknowledges we have such a great bond. Now shes telling me I need to go to court if I want access but I have no idea how or where to start and I feel it's all my fault for letting slip that I was struggling... more fool me, lesson learned 😞
 

HayleyB

New member
The hardest part for me is that I'm always worried about what to do, my head just goes blank when it comes to planning activities or what to play with or where to go and it is really stressful and frustrating because I know I should be doing somthing but have no idea what, like a friend suggested a day at the zoo a while back but I dont think I could do that on my own I get stressed about driving especially to strange places and I get stressed when surrounded by strangers and I really want to do better for my daughter but I just cant help it. I was stressed recently and needed a short break so I told my ex about it in Hope's of a short term solution, now shes stopped contact and says I'm unstable and it's no good for our daughter even though she acknowledges we have such a great bond. Now shes telling me I need to go to court if I want access but I have no idea how or where to start and I feel it's all my fault for letting slip that I was struggling... more fool me, lesson learned 😞
Hi, I wanted to add some balance here: if my husband had ever admitted he was struggling in this way we may not be at the point of separating as we are now. It was a brave and honest thing to do, and I'd hate for you to think all people will react badly. Best wishes for your way forward
 

AsdMum

New member
hi I think for myself it’s my children seeing my burn outs it makes me sad they have to witness me crash but on other hand I know it makes them understand burnout isn’t anything to be embarrassed about. I’ve also found I tend to clash a lot with schools as my flexibility off thought can cause issues 🙈
 

Margot

Administrator
I think the hardest part is having to fight for SEN provisions continuously and 'clash' with school about it. The hardest thing for me was to see my daughter crying herself to bed every night, to hear my daughter say "Mum, you said that the doctor [the Educational Psychologist] will help me, it's been a long time and nothing changed..." That really broke my heart.
 

Peebs

New member
Hello all. I am newly diagnosed at 37, and looking for advice from others on exactly this thing! I was a great mum when mine was a baby, because it was much simpler. Although the lack of sleep was dreadful, it was just feeding, changing, lots of cuddling, playing was simple and I got to nap when she did or get work done while she slept. I wrote two hour long shows during her first year! It’s the toddler years I’m struggling with. She’s so full of energy, gets bored, there’s no respite, no nap times. I feel like I’m letting her down, not being fun enough. Luckily her dad is so fun and dresses up and does characters and role play games, but I yearn just to snuggle together under a blanket and read her books.
 

OhIdontknow

New member
Hi there, I was diagnosed in my mid 40s following my son's diagnosis age 3.
I began to suspect I was autistic a few years before becoming a mum, at a period that now I can identify with burnout. So by the time my son was diagnosed I was already pretty aware of the spectrum, and his diagnosis in a way confirmed my own suspicions about myself being autistic.
My pregnancy was a time I really would not wish to revisit. My sensory sensitivities heightened, and I was finding it difficult to deal with my body changes. I was permanently sickened by smells, above and beyond what's considered "normal" in pregnancy. I struggled with my proprioception and had lots of digestive problems which didn't resolve until my son was a few months old actually. I come from a Latin American culture, where the mother is both revered and blamed for everything that goes "wrong" with the child, and I don't think my family and friends appreciated what I was going through. I had no close friends in Scotland who I could connect with either, as most people I knew didn't have children. So I felt really lonely, tired, and unsupported, and I didn't really look forward to becoming a parent.
On top of that, I initially had come across a lot of information about parents being judged bad parents simply for being on the spectrum.
Paradoxically, while not feeling prepared to be a parent, at the same time was terrified of the social services. I had read terrible things and was really worried that if I told anyone what I suspected, I'd be kept under close watch in case I proved to be unfit to parent. For a few years I kept my suspicions of being autistic quiet, until the day my boy was diagnosed. When I realised I had been right with my observations, I felt confident to open up to his diagnostician, and she encouraged me to get a diagnosis myself.
So those first few years were particularly difficult.
My son didn't develop like the books I read and the parenting websites I consulted, and that caused me a great deal of stress. In hindsight, this was simply because the literature on child development is written for and by NTs. Whenever I tried to speak to a professional about my concerns I was usually dismissed. My own suspicions of my son being autistic weren't taken seriously, until he started nursery and his teacher called us to tell us she suspected he was autistic (!)
So in a nutshell, I think that the difficulties of being a parent, for me, come with social interaction and trying to manage my own energy in the face of the expectations that society has of me as a parent. My boy has challenges, but again, I think these challenges are so in the context of society. To make a silly hypothesis, my boy and I on an uninhabited island would probably fare just fine. It's the introduction of societal expectations what creates the challenge.
I think being a mum has improved me in many ways, i.e. my tolerance my self-knowledge and my knowledge of humanity itself have grown exponentially. However, I know all this has come at a high personal cost. Had it not been for my ex wanting children I'd probably would have not had my son. But in hindsight, I would have miss out on a source of joy and inspiration and an enormous amount of love given and received. As for my son I don't want to get soppy and start going on about how awesome he is, but really he is an amazing kid, and now I can't imagine life without him.
 

WayneUtify

New member
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Hilde

New member
I personally struggle to do what my wife calls "picking your battles". I've got 2 toddlers and my autistic brain struggles to let go of the right or wrong way to do things when they're playing up. I need to learn how to balance whether it's worth arguing my point or whether it'd be better just to give them what they want to give myself an easier life. I struggle to come up with specific examples but hopefully you get the idea. It maybe doesn't help that we think my son could potentially be autistic.

Have we got any autistic parents here? What do you think is the hardest part of being a parent and also autistic?
Hello,
I am new here.
I have 2 sons both autistic, one diagnosed at 4, the other at 24. I have recently been diagnosed as Asperger's and my husband too. I really relate to the every day struggles. Ours was complicated by one son not being diagnosed (because of his strengths apparently). When they were toddlers we didn't know that we (as parents) were also autistic, although I suspected my husband was.
For me, the hardest part was lack of sleep. I seem to need more sleep than anyone else in my family. I also think I tried to persuade my husband to my point of view (I have a nursing background). I didn't realise that this just made my husband dig his heels in more. Perhaps its a female Aspie thing. Thinking that talking is the solution. My poor husband felt I was talking at him.
I also struggled to remember things.
Be kind to yourself. I also know that my eldest was seen as being "badly behaved". That lens doesn't help.
Life is exhausting so try to connect with someone who makes you feel good about yourself and gets your family.
 

Julia28

Member
Hello,
I am new here.
I have 2 sons both autistic, one diagnosed at 4, the other at 24. I have recently been diagnosed as Asperger's and my husband too. I really relate to the every day struggles. Ours was complicated by one son not being diagnosed (because of his strengths apparently). When they were toddlers we didn't know that we (as parents) were also autistic, although I suspected my husband was.
For me, the hardest part was lack of sleep. I seem to need more sleep than anyone else in my family. I also think I tried to persuade my husband to my point of view (I have a nursing background). I didn't realise that this just made my husband dig his heels in more. Perhaps its a female Aspie thing. Thinking that talking is the solution. My poor husband felt I was talking at him.
I also struggled to remember things.
Be kind to yourself. I also know that my eldest was seen as being "badly behaved". That lens doesn't help.
Life is exhausting so try to connect with someone who makes you feel good about yourself and gets your family.
I face same struggles exac same backgroun, sleep issues etc just as you men, only differenc is just 1 child undiagnosed. It helps to understand im not alone out there. Thank you
 

RoseWater

New member
I struggle with my autistic\ADHD daughter. I get overwhelmed with her struggles. If she goes into meltdown, I go into meltdown. Then I can't handle her. There is so much she doesn't understand and have no idea how to make her understand important things. I get so worried about her future.
 

OhIdontknow

New member
I personally struggle to do what my wife calls "picking your battles". I've got 2 toddlers and my autistic brain struggles to let go of the right or wrong way to do things when they're playing up. I need to learn how to balance whether it's worth arguing my point or whether it'd be better just to give them what they want to give myself an easier life. I struggle to come up with specific examples but hopefully you get the idea. It maybe doesn't help that we think my son could potentially be autistic.

Have we got any autistic parents here? What do you think is the hardest part of being a parent and also autistic?
Heh I can relate to all of that. People are constantly telling me that I need to pick my battles, and I realise that I'm making both my life and my son's difficult. Usually, when something challenges my beliefs or my values I just can't help myself and often I have to end up backtracking and apologising for reacting badly to things which in hindsight were just minor issues.
 

Shajomo

New member
Hi there, I was diagnosed in my mid 40s following my son's diagnosis age 3.
I began to suspect I was autistic a few years before becoming a mum, at a period that now I can identify with burnout. So by the time my son was diagnosed I was already pretty aware of the spectrum, and his diagnosis in a way confirmed my own suspicions about myself being autistic.
My pregnancy was a time I really would not wish to revisit. My sensory sensitivities heightened, and I was finding it difficult to deal with my body changes. I was permanently sickened by smells, above and beyond what's considered "normal" in pregnancy. I struggled with my proprioception and had lots of digestive problems which didn't resolve until my son was a few months old actually. I come from a Latin American culture, where the mother is both revered and blamed for everything that goes "wrong" with the child, and I don't think my family and friends appreciated what I was going through. I had no close friends in Scotland who I could connect with either, as most people I knew didn't have children. So I felt really lonely, tired, and unsupported, and I didn't really look forward to becoming a parent.
On top of that, I initially had come across a lot of information about parents being judged bad parents simply for being on the spectrum.
Paradoxically, while not feeling prepared to be a parent, at the same time was terrified of the social services. I had read terrible things and was really worried that if I told anyone what I suspected, I'd be kept under close watch in case I proved to be unfit to parent. For a few years I kept my suspicions of being autistic quiet, until the day my boy was diagnosed. When I realised I had been right with my observations, I felt confident to open up to his diagnostician, and she encouraged me to get a diagnosis myself.
So those first few years were particularly difficult.
My son didn't develop like the books I read and the parenting websites I consulted, and that caused me a great deal of stress. In hindsight, this was simply because the literature on child development is written for and by NTs. Whenever I tried to speak to a professional about my concerns I was usually dismissed. My own suspicions of my son being autistic weren't taken seriously, until he started nursery and his teacher called us to tell us she suspected he was autistic (!)
So in a nutshell, I think that the difficulties of being a parent, for me, come with social interaction and trying to manage my own energy in the face of the expectations that society has of me as a parent. My boy has challenges, but again, I think these challenges are so in the context of society. To make a silly hypothesis, my boy and I on an uninhabited island would probably fare just fine. It's the introduction of societal expectations what creates the challenge.
I think being a mum has improved me in many ways, i.e. my tolerance my self-knowledge and my knowledge of humanity itself have grown exponentially. However, I know all this has come at a high personal cost. Had it not been for my ex wanting children I'd probably would have not had my son. But in hindsight, I would have miss out on a source of joy and inspiration and an enormous amount of love given and received. As for my son I don't want to get soppy and start going on about how awesome he is, but really he is an amazing kid, and now I can't imagine life without him.
Hi, I can relate to this so much! Thanks for sharing. My son is now 14 but I still often feel like I am failing him, even though I know I am doing the best I can.