Autistic parent with neuro typical child

[Zoono]

I have just completed all of my asd assessments and while I need to wait a couple of weeks for a diagnosis of autism, the likelihood of that is pretty high. However I am also a single parent to a very sociable, kind and clever 2 year DD, who appears completely neuro typical and functions far better than myself. How do I provide her with the best possible childhood without continuosly triggering myself, in order to meet her needs? Currently, I would always choose to put my dds needs first but it does and has caused real damage to my mental health.

There's a dad in my son's year group who always just reads his kindle at class parties, never chats to anyone. Possibly the benefit of being male as well but it's never commented on and I have copied his lead a couple of times at events where I don't know the parents. Just a suggestion as a way to get through events that are harder for you without your child missing out.

Also never stress yourself about being friends with the other parents. I don't do drop off and pick up so only know the names of the parents of my son's actual friends and it's fine. I'm NT and naturally social but the school parents don't need to be my social group.

Op there is very little support when you are diagnosed. Anyone can access career advice without diagnosis. You might qualify for a small amount of financial support but it's nothing life changing and the government are looking to reduce such benefits anyway.

You need to find coping strategies, ear plugs, other neurodiverse parents to be friends with, socialise outside and use childcare to give social opportunities to your child.

So to be clear here, the OP doesn’t yet have a diagnosis but posters have decided she actually is autistic because her mother probably is and no one thinks this is a little bit ridiculous?

i was also told there would be so much support and yet there wasn’t anything that i couldn’t have accessed before getting a diagnosis. in fact id already done everything they offered that i thought was helpful prior to being referred.

even with my ADHD, the only thing i couldn’t access without a diagnosis were the meds, which i now haven’t been on for a year due to pregnancy and breastfeeding - so self management is vital ‘ but they also weren’t a silver bullet that made me “normal” anyway. nothing is.

the hardest, but most important, work you’ll do as someone with strengths and weaknesses is to identify them and rectify them. it’s a lifelong task and it requires you to do stuff you might find extremely uncomfortable or impossible. you’d likely be doing this regardless of your diagnosis since you seem quite self-aware.

i really wouldn’t put too much focus on life dramatically improving after you get this diagnosis and all the support. it can be giant let down & huge source of stress when you’re holding out for help and then the day you think you’ll get it comes and goes without a change.

i hope this isn’t the case. but equally, if you NEED support then why wait? see what you can access without a diagnosis. i’ve never heard of careers advice requiring diagnosis, you just might have to go to your local job centre instead of through the clinic.

I would say lots of hobbies and clubs may be the key. That gives you a break and gives her a chance to be very sociable, and spend time with different adults as well

Does she go to nursery/preschool? My outgoing daughter absolutely loved nursery.

@iamfairlysureiamalmost nobody gets to assessment stage in adulthood and gets the outcome of neurological. Self diagnosis is valid, and protected under the equality act.

That was what I had to do @outfitrepeta

It is harsh but ultimately the support out there is non existent and one of the reasons for that is that there are only so many adaptations and so many different things we can do. Ultimately there is no cure; we can only manage.

But diagnosing a two year old on the basis of someone else’s self diagnosis online is utter madness @Perfect28

I have two children. Neither show any signs whatsoever of autism or ADHD. Not one.

Perhaps I don’t have either; perhaps their dads genes prevailed, perhaps they just don’t have it!

No, the pattern with us later diagnosed women tends to be that we have struggled all our lives and had difficulties with relationships and our careers . Most of us were failed completely at school and bullied and did not reached our potential there . Some of us were wrongly diagnosed for years and made to take all sorts of combinations of drugs. In my case, anti psychotics as I was told I was bipolar due my light and noise sensitivity. These made me fat and walk around in a daze.

Having a diagnosis can be good in the regard of, for example, doctors not assuming you’re “just” depressed and trying to make you take antidepressants you don’t need (or labelling you treatment resistant when they don’t work) if what you actually have is ADHD task paralysis, or pushing you down the route of CBT which can be completely useless for a lot of ND people but… so many people assume that there’s some kind of mythical “help” out there for all kinds of disabilities that’s going to solve every problem people have as a result of their conditions, and there just isn’t. Which is why seeing “you need to get help” or “tell him you’ll leave if he doesn’t get help” is so frustrating.

By and large, there is no “help”. It can be a real short sharp shock to get a diagnosis thinking it’s going to be the pathway to making things easier, and then realising that just isn’t available.

I agree with @TwinklyStork . A great source of sadness for me post-diagnosis is being more aware of the support or adaptations I need, but realising that I would need to do an enormous amount of advocacy for myself to access that support, and likely to judged or mocked in the process even if I did manage to communicate what I needed (and miscommunication is rife/likely).

Having a diagnosis doesn't get you any help that you couldn't have accessed without the diagnosis. Treatment for autism related stuff is based on supporting the difficulties and so that should be accessible regardless of a diagnosis.

You could be me. I always struggled socially and with sensory issues, and told I was not 'normal' (thank you mother). It was only once I had children that many of these issues really came to a head.

And it was only after realising my eldest was probably ASD that it occurred to me that all my difficulties coalesced into a possible answer. Then my brother was diagnosed at 50 as well.

I wish I realised earlier, as my older son was a huge handful (he tended to be sensory seeking rather than avoidant!) and my younger son was a screamer. I was in sensory overload most of the time. I still did all the things that you were supposed to do - toddler groups, soft play, birthday parties, but struggled with each and every on. I wish I'd thought of more strategies that would help me - those noise reducing earplugs would have been a godsend if I'd known about them.

I fear that even if you do get a diagnosis, there will be little support available. It might just make you more confident in speaking up for yourself, though, and advocating for any adjustments needed.

I'm autistic with one autistic child and one NT child. I think as long as you are a present and loving parent then there's no reason being autistic or not should be an issue. I guess socialising- but once they get to school they make their own friends rather than parents making play dates etc
i have had to ask for support from their dad when it comes to advocating for them in meetings. If you can't ask your child's dad maybe a friend or relative could come with you to help if you would find that difficult.
i put noise cancelling headphones on to do the bedtime routine because by that point in the day the whinging goes right through me and it allows me to be more patient.
also support does exist- I got put under the adult autism team through my CMHT and they can offer support

Yep and employers might "talk the talk" but they really can't give a stuff and in my experience think I am being difficult if I ask them not to change my shifts at the very last minute as it messes up with my routine...

NT child of autistic parents here.
My parents are great and they gave me a lovely childhood. Often for reasons related to their autism.

For example: They gave me a love of learning by sharing their geeky enthusiasms with me.

And they had no time for arbitrary social rules that didn't make sense to them.
Which meant that they were cool with me making a mess or taking over the house with crazy games. (I remember an afternoon long role play game about "Spiders" that resulted in a load bearing knitting wool "web" covering the entire living room)

The one thing I feel was a bit lacking was some proper socialisation in the ways of neuro typical people and the kind of behaviour normally expected of a child.

I was fine at school but had a reputation for being a bit naughty and wild among my friends parents.
Not for anything malicious- just cluelessness about normal household rules and expectations.

Add to that my Mum's habit of sometimes simply walking out the room if I was too loud (which I now understand to be a sensory thing).

It did leave me with the impression that I was just naturally anti social and difficult to deal with, which I'm still a bit neurotic about today.

My parents came from abusive homes and didn't have a lot of contact with their families of origin. Plus their own friends tended towards the countercultural. So they didn't really have a lot of ordinary up"respectable" people around who could have filled the gap for me.

Oh and just to add.... They're fantastic grandparents to my two ND kids.

This. Many people would look at me and see that I have a relationship, a business and a child and be just as cynical as @iamfairlysureiam. Because I don't generally introduce myself by saying "Hi, I'm Laura, I was expelled from two schools, sacked from every job I've ever had, my partner has to remind me to wash my clothes and I sometimes cry when the supermarket rearranges the shelves. Oh, and I was frequently coerced into sex I didn't want from the age of 16 to 25 because my attempts at "acting normal" were interpreted as flirting and I had no idea how to extricate myself from the situation." My social skills are pretty crap but even I know that's not an appropriate introduction.

Your parents sound amazing @unlimiteddilutingjuice!

Ah, but in the cases I’m thinking of, I know that they have not been expelled from two schools or sacked from every job they’d ever had. I would agree that that case would be someone actually impaired by their disability,

But in any event, the area of trepidation I have about pursuit of a diagnosis for both adults and children to a certain degree is that people are encouraged to do so because it can then lead to avenues of support. However this support does not materialise. It is literally just something confirming ‘you are autistic ‘ And that can in some cases impede things such as jobs, driving, if you want to live in a different country and so on.

I suppose what I’m saying is the more people are diagnosed with autism the less it’s seen as a ‘disability’ and it is; it can be devastating.

Thanks LauraMipsmum They really are.

Yes, that's fair @iamfairlysureiam. There is post-diagnosis support available for children at school (OT, SaLT, ELSA etc) but almost nothing for adults. I don't have a co-occurring learning disability so I was able to research and learn more about autism, which explained to me why I was reacting in the ways that I do and gave me the tools to make changes that work for me, so a diagnosis was beneficial in that way. And crucial for someone like @Autisticauldbag so she could come off the medication for a condition she didn't have - and sadly she's not alone, I know of several women who were put on drugs for bipolar or schizoaffective disorder that they didn't actually have. But in terms of a pipeline from diagnosis to effective support - no, there's not much out there.

You need to direct your efforts towards finding support for the both of you.

Whether or not your DC turns out to be NT or ND - it almost doesn’t matter - it’s not sustainable if putting your child’s needs first, whatever those needs may be, creates a mental health crisis for you.

Things to consider

• practical support for domestic stuff - cleaning, organising, meal planning
• mental health support for you - therapy, medication, OT, support groups as appropriate
• social support for your DC if things like play dates, outings, soft play etc are enjoyable for DC but not possible for you to engage with
• as many other trusted adults in your DCs life as possible - aunties, babysitters, childminders - providing varied social time for DC & respite for you

Ask your GP or social worker if you have one about home start or similar programs that can provide ‘mother’s help’ services.

There are no easy hacks or ways to white knuckle your way through it.

You may already know this, but there is no circumstance in which is is ever helpful to tell your DC that their needs cause you harm or distress. (Ask me how I know, as the child of at last one ASD parent!)

Also: however high functioning and ‘neurotypical’ they may seem as they grow older, and however much easier they may seem to find life than you do, your child is never an appropriate person to lean on for emotional support or advice.

This may well be obvious to you, but it really won’t be for everyone, so please don’t take offence that I spell this out quite directly. If it’s not relevant to you, you can just leave it.

You're in a tough situation, particularly as a single parent. I wish you and your DC all the best.

And without a diagnosis you have no legal right to adaptations so in order to manage, diagnosis is key.

Oh, it must be just awful to have been diagnosed with bipolar or equivalent and put on heavy meds. I think I managed to mask well enough that I never really drew adverse attention, although I definitely had a car crash of a time in my twenties and thirties. As much as my children have been the hardest thing ever I do feel like being married with children has been very stable for me. I have been in the same job for five years now. Before that I only managed two, often a lot less! So there IS hope!

This works if the adaptations are easy but a lot of the time they just aren’t. Which is why I’d always recommend really thinking about what to gain.