"Not allowed" to be autistic

Ironically I'm constantly trying to teach my children to ask for help, to say it's OK to be supported. I won't do it myself of course! I'm probably trying to make sure they have a better future experience than I felt.

Unfortunately it seems to be a real postcode lottery. Herts and Beds are great, but I don't know other areas, I think this site has a directory? I can't remember - my wife found it.

Thank you, things are feeling better today. Where would someone find an autistic group? I didn't really know such things existed, I've been thinking of ways to try and meet new people who I could get along with.

I can relate to a lot of that. It may be autism - I don't know, but I fractured my toe as a kid and it never occurred to me to ask my mum about it. I'm used to solving things myself and am now finding that I need other people.

My wife is from a household of 3 sisters. Their normal method of communication is to rapid fire questions and talk all over each other. I put my hand up if I want to say something.

Thank you for sharing this, it means a lot to me. Sometimes I do try and talk to my daughter, but she puts up her own barriers so I don't exactly know how much gets through to her. We sometimes have this relationship like magnets - sometimes we repel each other, so just don't get along, and other times we attract so we just "get" each other perfectly. With us it's an either-or situation, we don't do middle ground!

Thank you everyone. It is a new day, my bad mood has passed. I think because my usual week had some upheaval, causing some issues for me, and I'm going through a project at work where they are never happy with anything - being told constantly what you're doing isn't good enough will get anyone down.

I feel I should point out that my wife is as supportive as it is possible to be, I don't feel let down by her. There will be limits to what she will understand - it is similar for me trying to understand her problems she's faced in her life, because I've never experienced them myself it becomes a lot harder to empathise. And when I do try to explain sometimes that maybe she could not jump between conversation topics in one go so I can keep up, she doesn't understand why that's an issue. It's what she's used to. I do find that hard trying to explain things over and over again yet making no progress. But we do love each other and for the most part we are in a good relationship.

I wasn't exactly brought up this way, but I have somehow learned that I've needed to solve all my own problems myself. It's a philosophy I've always lived by (probably due to my own lack of connection with people), but there are occasions where it does wear me down, where I would just like things to either stop or someone else deal with my problems. Everyone needs a break now and again.

This is a common experience among those of us who have an autism diagnosis later in life (30 and above), which is yet another set of reasons why it’s even more critical that post diagnosis assessments to properly assess in a systematic way the type and level of autism and appropriate levels of autism support in any areas of life must become a basic legal entitlement for those diagnosed with autism and a basic legal obligation on all providers both public and private - the universities must share some of the responsibility for this, as they are not providing the proper courses on autism which is a dereliction of civic duty towards disabled people in our society, which also contradicts the leftist principles which they seem to be following these days - the NHS should not be expected to handle issues with mental health, disability or hidden disability, as just like GP’s they are ill-equipped to do so and the system of going to GP’s for referrals needs to be scrapped, as it is demeaning and degrading - with so many people being diagnosed later in life in the coming years, this is going to create a serious problem in the coming years with an elderly autistic population who will need enhanced support - there is too much focus on children’s autism and the lame excuses why autistic adults cannot be helped need to stop and indeed, many changes to the current system don’t even involve funding - even for those support services that do need funding, the money required could be found by cutting out mismanagement, wastage, misuse of public funds and even potential fraud, if a root and branch investigation was carried out into the NHS and all other public bodies, many of whom are too big for even the largest infusions of cash - those autism charities that do exist and who have almost zero funding are doing far better work with the funding they do have by comparison and are only being held back in many cases by lack of funding - if an autism census was carried out, there would be a sizeable number of respondents over 30 

It can get better.

Let me tell you two stories to show that the "30 years late" is not a thing.

Yesterday in my group, one young lady was diagnosed as a child, the family didn't accept it, she was fostered, was in CAMS and is just starting to get her life together now after an horrendous time.

I got diagnosed in my 50s, and I had the loveliest lunchtime with my autistic group speaking for an hour to a trans woman about quantum mechanics. This is an experience that I've never had before and it was brilliant.

I think probably the most important thing for you is to get your wife on board. That was the most important thing for me. My wife has gone from being slightly embarrassed by the idea many years ago to being fully behind me today.

I don’t think you are selfish, you have a right to be yourself and ask others for some understanding. It’s sad, that people care only about autistic children. Children grow up and become adults. And of course nobody needs to care about adults as much as for children, some understanding and compassion are still needed. I’m sorry you are going through this. I must admit I’m really lucky to have understanding supportive and accommodating colleagues at work so I have my reasonable adjustments at work without any official diagnosis. Maybe I’m gonna have one after some time, but it doesn’t matter here. It was even harder to sort out with my husband because he was unable to understand sensory sensitivities, which became a big issue since we have our child, he finally accepted the fact that I need earplugs at home. 
Wether you get a diagnosis or not, you have a right to be yourself and have also your needs accommodated.

You are allowed to be yourself. You don't say how long it's been since you found out that you were on the spectrum, but it can take a long time to find your true self and stop masking all the time. You might still need to mask on occasion, such as meetings with your daughter's teachers for example, but you should be able to be yourself at home and in your workplace, at least.

I suggest you research more how autism affects adults (ask any questions you like on here), work out what changes would make life more comfortable for you - maybe getting groceries delivered instead of going to a supermarket, not going to so many social events, having a quiet time each day or each week just to be by yourself, moving to a different space at work where there are less distractions, etc. - then when youve worked that out, have a chat with your wife about it and ask your employer for any reasonable adjustments you feel you need.

I hope things improve.

I'm sorry you're feeling this way. Perhaps a little self-advocacy might help, by way of sharing more with your family about how you're feeling and what changes you'd prefer to be able to make?

pdaddio83 said:

I'm expected to mask all the time because I'm the parent in a family and I must be the one who leads by example

As you probably know, masking by autistic people can have very harmful impacts  - such as it being one of the reasons why we can be more at risk of mental health issues and suicide.

So you could perhaps strengthen your case by explaining that, by unmasking more yourself, you actually would be doing exactly that - leading by example.

More information: 

NAS - The impact of masking

It might also be worth considering couples (or even family?) therapy (with a neurodivergent-experienced therapist) to help you and your wife explore and work through this. 

Also / alternatively, this book might be helpful to you as a couple: 

Loving Someone with Asperger's Syndrome: Understanding and Connecting with your Partner

It's a horrible feeling when people are like this, I think it might part of an NT thing about turns, lots of NT people seem to think that things like ASC can be turned on and off and now it's your daughter's turn to be helped. Weird I know.

I'm sorry you feel you can't be yourself. I am not a parent myself, but my father was autistic. (I am also autistic.) He was never diagnosed, but I am certain he was. And, by the end of his life, I think he had come to realize the truth as well.

I know he found certain aspects of parenthood difficult. My mother knew this and she did try to help him with some things. For example, he found it hard to socialize with other parents so my mother did most of the socializing as she is very good at it. But, with other aspects, she was not so understanding. There were times when she would get annoyed that he wasn't pretending to be fine, that he wasn't masking. For example, one Christmas when my dad was suffering with poor mental health, he spent a lot of the day stimming. (If you don't already know, stimming is self stimulation that autistic people use to regulate there nervous/sensory system. I t can include a variety of things like repeating noises, flapping hands, etc.) My dad sat on the carpet and rocked himself backwards and forwards while we opened gifts. And, my mother got angry with him. She felt that he was being weird and that because it was Christmas he should at least pretend to be ok. The fact is that he and my mother didn't always agree on how he should behave. This did result in heated arguments sometimes. But, I think that was ok, necessary even. Arguments are a natural part of all relationships, and as long as you can work through them, and continue to love each other that's all that matters. My mother loved my father, autistic quirks and all.

And, I loved my father too. He was a good dad. Sometimes he annoyed me with his autistic behavior, but as I grew older and learned more about autism, I became more understanding and accepting of him. Now, I have recently been diagnosed with autism myself and I wish he were still here. I realize that he accepted my weirdness before I even realized I was different. And, I know he would understand me far more than my mother does. As I am sure you understand your daughter's difficulties. 

Seeing him struggle with being different was difficult to watch. And, making adjustments for him could be frustrating. But, the fact is, my family did make adjustments for him. Sometimes, I think my mother did too much to accommodate him. But, there were other times when reasonable changes had to be made. I don't think it is unreasonable for you to want people to make adjustments for you, especially if they aren't large ones. But, whether people will be willing to make any changes for you is a whole other story. Also, I think it is unfair for your family to expect you to mask all the time. I realize that when you have young children, it can sometimes be better to keep some things secret. My father definitely masked around me when I young. But some secrets shouldn't be kept forever. Maybe one day you can talk to your daughter about autism and the difficulties you both face with it. I always found it comforting to be able to talk to my dad about my mental health issues (anxiety and depression) because he suffered with those issues too and he understood what I was going through.

pdaddio83 said:

this is me feeling a bit selfish here, who says any of that to me?

The approach to someone like yourself in society is pretty much:

You are big enough to deal with it and get on with it.

pdaddio83 said:

I knew deep down that no-one would care

Other than close friends, family and a partner, nobody else if going to do more than give you a pat on the back and say "thats too  bad" in reality, and most will just say "deal with it" and expect you to get on with it, after all you have got this far without the support you are now talking about.

I learned long ago that nobody is going to look out for you so you need to look out for yourself.

My advice is to educate yourself, make what changes you need to operate comfortably with your autistic limitations and carry on as before.

Get a therapist to help you process a lot of this - it really does help. I've been there, done the sessions, found out a lot more about myself than I realised I needed to and have benefitted tremendously from it. Just make sure they are very well versed in treating autistic adults.

You can always rely on this community to give a mix of support and advice.