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theprisoner
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04 Jan 2022, 9:14 am

^ Don't you have like a carer support group, where you live? I know parents of disabled can rely on such services, and being challenged yourself to hold up under pressures which are greater than average, it sounds like you could benefit from some kind of social support. If just, to give yourself some breathing space. Disperse responsibilities, and lower your stress.


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IsabellaLinton
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04 Jan 2022, 9:23 am

I have Agoraphobia, Scopophobia, and mutism. I wouldn't participate in a support group even if it was online video. I think a computer chat group like this would be perfect so thanks for the idea. I guess I can look into that. I hate to say but even the task of looking for it and doing the paperwork is overwhelming. I hate all that type of executive function and having to reach out to professionals (especially when they're often NT, and I feel misunderstood or overwhelmed). I have a feeling I'd be rejected because they'd say my kids are too old, or find some reason why we don't qualify. That shouldn't be the case when we receive disability insurance and she's classified with a permanent physical disability as well.

Food for thought -- thanks for the suggestion. I'll let it mull and do some poking around.



theprisoner
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04 Jan 2022, 9:37 am

Well, not so much a support group, but more like shift work, outside help, i don't think your daughter would qualify though, again. But with your status as autistic, you obviously need some kind of support, you shouldn't be expected to burn yourself out over and over again. (It's not good for your health.) As much as you feel the need to be 'hyper-responsible' , self sacrifice, should have some limits. I too, have terrible executive function, or i'm just lazy, i don't know. ha. Nobody likes to be faced with tasks, overwhelming. I really can't comments cause in comparison i live the 'Life of riley'. Carefree, not responsible to others. But it is hard,even for NT types, who are quite resilient, and welcome social contact, and thrive off that stuff.

Here , UK, government red tape is pretty heavy. But there's always people willing to help the needy. And it shouldn't be that hard to get something going, just need to make contact, let people in. People don't judge you, scrutinize you, here. If you're in need of help. Which i think you are. If nothing, you should try it, to look for help outside yourself, so you can relax, and feel peace of mind, let burdens lighten. Find somebody to be a sounding board in the very least, and give you advice. I'm sure there are service where you are, which deal with this.


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AQ: 27 Diagnosis:High functioning (just on the cusp of normal.) IQ:131 (somewhat inflated result but ego-flattering) DNA:XY Location: UK. Eyes: Blue. Hair: Brown. Height:6'1 Celebrity I most resemble: Tom hardy. Favorite Band: The Doors. Personality: uhhm ....(what can i say...we asd people are strange)


EEngineer75
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04 Jan 2022, 11:36 am

theprisoner wrote:
Well, not so much a support group, but more like shift work, outside help,...

Does the UK have "patient advocates" or social workers of any kind? I.e. people whose job it is to help shepherd people in serious need through the system to find the right services?

My work has some decent extras through their Employee Assistance Program (EAP): elder/dependent short-term caregivers, short-term counseling sessions, life transition help, etc. The help line people are pretty helpful.

Government social/case workers and a specialized non-profit might be other places to ask in the US...



IsabellaLinton
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04 Jan 2022, 11:51 am

I'm in a loophole. I'm on national disability and my daughter is on local disability. Services such as home care (snow removal, reduced land tax) are only allowed for people on local, for some ridiculous reason.

My daughter has applied for those services but they say she can't have them because she isn't the home owner. I can't have them because I'm on national. There's so much red tape and bureaucracy, it's a miracle anyone gets help. None of us got any Covid supplement money either, because of being on disability. They say we didn't lose any money because we weren't working. It's all bull crap considering how much we've sacrificed and spent to deal with Covid and her high-risk immune status.

In terms of carers, I know they're few and far between. They also cost a lot of money. They're only subsidised in extreme cases where people need assistance with toileting, eating, or bathing. I don't need help with any of that. I need help with executive function and adaptive function. Yes I see an OT and a psychologist for that (related to ASD / ADHD), but it costs money and it's about me -- not my kids. They don't come to the house or sit down to do paperwork for me. Even when I had my stroke, OT only came for a few months to teach me how to use my hands again. Then I had to go to hospital rehab program. Nothing is specifically related to parenting.

The last time I went to family court with my ex it was very traumatic because of executive function, overwhelm, and paperwork. I applied to the court for some sort of support because I have diagnosed ASD -- Level 2, ADHD, CPTSD, sensory disorders (the lights and noises bothered me), and I'm mute. Their website had all sorts of rhetoric about assisting people with disabilities but when I spoke to them it was all smoke and mirrors. All I could do was pay my own person (therapist of whichever sort) to accompany me -- but to do so I had to pay my lawyer his rate of $500 / hour to apply for this allowance and have it approved by my ex's lawyer (LMAO) -- meaning they would fight about it for weeks and then I'd pay thousands of dollars in legal fees plus paying my therapist their going rate to go with me. Oh, and the therapist or support person wasn't allowed to do or say anything on my behalf.

You couldn't make this crap up if you tried, but this is what thousands of disabled parents deal with every day.



MrsPeel
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22 Jan 2022, 1:59 am

That's rough.

It sounds like you may have similar issues to me in being unable to advocate for my family's needs very well.
Somehow people never seem to realise I need help, even when I outright ask for it, yet other (presumably NT) women seem to be able to get whatever they need straight off, even if they only drop hints. Maybe it's my non-verbal communication being "off", I really don't know.

(Apologies for long time between responses here, I have periods when I'm more into reading posts on wp than actually writing responses. Probably my deep-seated fear of offending people sometimes makes me a bit nervous about responding).



IsabellaLinton
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22 Jan 2022, 2:03 am

I'm diggin' your new avatar! No worries about writing. Take your time. It takes me forever just to process and mull what each person has said.

Do you have an advocate or someone to help you when you feel overwhelmed?



MrsPeel
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22 Jan 2022, 3:49 am

Nope.

I only got diagnosed a few years ago - as I don't "seem" very autistic, and my son got diagnosed just after me, which was quite late at age 17. (What can I say, I thought his autistic traits were pretty normal, until I discovered I was on the spectrum and he must be too, and my unfathomable daughter was the "normal" one).

So I'm much more used to "pretending to be normal" than negotiating how to get help, and because I don't seem very autistic people don't understand why I would be needing help anyway.

But I was able to get my son onto the NDIS (national disability insurance scheme in Aus), and he qualifies for some limited types of support through that, which has been helpful. At the moment he has someone come by twice a week to help him with job readiness.

Anyway, the way I cope with things is just by doing what I feel able to do, taking time for myself when I can, and letting a lot of things slide. Like I don't even try keeping up the garden anymore and the house is not the cleanest. I found those things are not as important as being emotionally available to the kids, as much as my autism allows.



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22 Jan 2022, 4:04 am

I'm actually coping OK at the moment, as now my kids are older they can look after themselves a bit more.

But because they're still living at home and not working, and therefore dependant on me, I've developed some kind of "health anxiety". Whenever I get a bit ill, I start catastrophising about it, thinking it could be something really serious and make me unable to work (and hence, unable to pay mortgage and will lose home, unable to support kids etc. etc.)

It's actually counterproductive, because sometimes the anxiety comes out at work and is disruptive and I wonder if it will become a self-fulfilling prophesy, maybe anxiety morphing into something more serious. But knowing that the anxiety is unhelpful doesn't seem to stop it from happening.



IsabellaLinton
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26 Jan 2022, 2:58 pm

MrsPeel wrote:

I only got diagnosed a few years ago - as I don't "seem" very autistic, and my son got diagnosed just after me, which was quite late at age 17.


So I'm much more used to "pretending to be normal" than negotiating how to get help, and because I don't seem very autistic people don't understand why I would be needing help anyway.


My story is much the same. I was diagnosed Moderate ASD in 2018 and ADHD in 2020. My daughter was diagnosed with HFA in 2018 and ADHD in 2021 (both after me).

It's very frustrating when people think you don't "seem" autistic or they underestimate how hard it is, especially for single parents. We're pushing ourselves beyond capacity on a daily basis for the sake of our kids. We have no choice but to put on a brave face and try to be as competent as possible. The alternative is a nervous breakdown. In return for our composure we're treated like nothing is wrong.



MrsPeel wrote:

I was able to get my son onto the NDIS (national disability insurance scheme in Aus), and he qualifies for some limited types of support through that, which has been helpful. At the moment he has someone come by twice a week to help him with job readiness.


Congratulations! It's a ton of work to arrange insurance support for ourselves, let alone other people. A tip of my hat to you for being able to navigate the system and secure help for your son. My daughter receives disability benefits (a pittance of money), but no services pertaining to job readiness or practical skills.



MrsPeel wrote:

Anyway, the way I cope with things is just by doing what I feel able to do, taking time for myself when I can, and letting a lot of things slide. Like I don't even try keeping up the garden anymore and the house is not the cleanest. I found those things are not as important as being emotionally available to the kids, as much as my autism allows.


Very well put. That's a great way of looking at it. Being "emotionally available" is such a good phrase, especially with the caveat "as much as my autism allows". I'm always available and always putting their needs first, but at times I wonder how badly I've screwed them up with my own peculiar ways. I'm always beating myself up that I could have / should have / can do better by them, and that they deserve(d) a better parenting experience.

That being said I know they love me to bits. I just wish I wasn't so crippled by Alexithymia and so exhausted by depletion. At present I demonstrate my love by "doing" things for them much more than by "telling them" or expressing my feelings in words. It's a work in progress, especially as they get older and I'm not supposed to be "doing" things for them anymore. Even though they're self-sufficient in certain areas, I end up worrying on their behalf, or spending hours thinking through their problems before catching myself. I'm always trying to balance "that's their problem to solve, not mine" against my maternal instinct and my parental responsibility to be both mother and father at the same time.



IsabellaLinton
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26 Jan 2022, 3:17 pm

MrsPeel wrote:
I've developed some kind of "health anxiety". Whenever I get a bit ill, I start catastrophising about it, thinking it could be something really serious and make me unable to work (and hence, unable to pay mortgage and will lose home, unable to support kids etc. etc.)

It's actually counterproductive, because sometimes the anxiety comes out at work and is disruptive and I wonder if it will become a self-fulfilling prophesy, maybe anxiety morphing into something more serious. But knowing that the anxiety is unhelpful doesn't seem to stop it from happening.


I can relate to this too. There's a form of OCD called "Responsibility OCD" which seems to fit this feeling. I think we're so hyper-vigilant about being responsible and carrying the burden for others, it's only natural for us to get overwhelmed. Anxiety is common for all autistic people. It stands to reason that single parents would feel that pressure even more profoundly.

I assume you have regular checkups for your physical and mental health. Does your doctor know about this pressure that you feel? Do they have suggestions? In my case I kind of overcompensated by getting a ton of life insurance, a Will, power of attorney, a trustee, and other safeguards. None of that makes me feel better because I know the kids need more than money in their futures. They need me. Knowing I'm irreplaceable is a hard pill to swallow (not tooting my own horn, but you know what I mean - they need more than a roof over their heads).

I wish there were more support groups for autistic single parents, and especially those with disabled adult children. It's certainly a unique category. Younger disabled children will always have services provided by the government but once they turn 18 they need support adulting and they're expected to survive on their own. That triggers our fear because we've been there ourselves as struggling adults. We know how scant true resources are, both practically and in terms of compassion.

I hope this thread helps you feel like you aren't so alone.

I should post another question but I'm kind of brain-dead. I'm in a huge shutdown lately. It's very comfortable but I'm afraid when I snap out of it, reality will be extremely overwhelming.



Erjoy29
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13 Feb 2022, 9:56 am

A co-worker of mine.

She has autism, ocd, ptsd, bipolar, and borderline personality disorder. Her high conflict ex has schitzophrenia. Her 11 year old daughter has autism. It’s possible other things but nothing diagnosed yet. She is trying to make it financially.

You aren’t alone. I also saw an article on google about a single mom with AS with two kids with AS. Power to you. Good job making it through.



IsabellaLinton
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01 Mar 2022, 11:08 pm

Thank you Erjoy. ^

Sorry but I just saw this post now. I hope your friend gets the support that she needs and deserves, and that her daughter finds some semblance of stability despite all the turmoil.

I continue to welcome input from all other autistic single parents.

Anyone ... anyone?



Ettina
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04 Mar 2022, 6:04 pm

I'm single and pregnant, so pretty soon I'll be a single parent. Luckily, I have a lot of support from my family.



IsabellaLinton
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30 Apr 2022, 11:17 am

Thank you for joining the thread, Ettina.

I hope things are going well for you in these last few weeks!



HiccupHaddock
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30 Apr 2022, 1:32 pm

Dear all,
I hope you don't mind me joining in. I'm not a single parent, but think I am probably an autistic Mum (undiagnosed) of an autistic child (diagnosed). I think the topic of being an autistic parent of an autistic child is a very interesting one.

I really recognise some of the challenges you have mentioned, like balancing sensory needs of my child with mine (e.g. my child likes to make lots of very loud noise, my ears are very sensitive); trying to remain emotionally available, especially when I am becoming very exhausted; feeling very low confidence about my parenting skills (especially when my son is very upset about something, and I wonder am I doing all the wrong things); excessive worrying and anxiety about the future, sometimes health anxiety. I have never had great stamina and am prone to mental/social/physical exhaustion, and am quite a worrybus.

I have a wonderful partner who supports me a huge amount but also gets very exhausted too. I imagine it is all so much harder when you are a single parent. But I can totally understand many of the issues you are going through, I think perhaps because it is the common experience of being autistic parent of autistic child. I hope you won't mind me chipping in, I just wanted to show solidarity. I can't say I know what it is like to be single parent but I think it sounds like you are doing your very best and are a very caring parent. Don't let anyone judge you.