Starting my Journey

[FindingAmelia]

Hi everyone, I'm new (obviously) to the forum and to the world of autism. Well, not brand new to autism, I have two nephews on the spectrum and I've done work with adults who have autism... but I'm new to it being so close... I guess. Sorry ahead of time if this gets long and rambly.

Last July my husband and I were out camping with our six kiddos and we suddenly realized that daughter actually exhibited many signs of autism. I researched it like crazy for a while. We tried to get her evaluated but were told she was "too young" and we'd have to go to the hospital for an eval. (She was four years old.) We didn't want to take her to the hospital clinic.

A couple months later I was talking to another mom friend (who has experience with autism, especially in girls) and we were talking about my concerns and she validated them and then after several minutes we realized we were talking about two different kiddos! She thought my older daughter might have autism. It wasn't as immediately clear to me, but as the months have gone on, I see it more and more. And her struggles are magnifying to the point where we feel like we need to be able to help her understand why she is struggling so significantly.

Our kiddos ages are currently DD15, DS12, DD10, DS7, DD5 and DD2. Our two oldest children are adopted and have severe special needs. Our other four kiddos are bio kiddos. Seeing our DS7 grow and mature emotionally and socially, has been a helpful measuring stick (for lack of a better word?) to really see how far behind DD10 has fallen. We homeschool, which I am actually thankful for, because I know how devastating social life would be for her in a public school setting. But it also limits our ability to see certain aspects of things.

Anyway... yesterday I scheduled the two girls (DD10 & DD5) for evaluations. They will be seen in August. I also scheduled myself for an evaluation, seeing so much of my struggles in my girls and in other things I've been researching about autism in women. My appointment is in September. I'm here for some community and support. I feel, in many ways, like a fraud. Even though I know I'm kind of drowning with all of our kids needs and my own difficulties, for the most part we are a functioning family and I look like a pretty "normal" person. <-- (Or maybe I just think I do!! :/ )

Part of that might be that my sister has been diagnosed with multiple mental illnesses (I wonder if it's misdiagnosed autism) but she is much less functional than I am by far. So it feels selfish somehow to want to pursue this for myself. At the same time, if my girls and I do share this in common, I'd like to be able to tell them that and be able to be there for them in that way. If that makes sense...

Anywho, I'll end it there for now. Looking forward to learning and growing.

 

[tree]

 

[Tom]

I don't really see adjusting to fit in as faking. You know everyone, NTs included, has to adjust to do so (fit in to work within a society). The norms are to an extent determined by where and when you are. For example you would have to do things differently, follow different protocols if you were brought up in New York City or Papua New Guinea. And as we are not nearly all physically the same or have the same abilities we are not all mentally the same either. We all are just trying to make our way in the world such as it is.

Now that HF autism is more widely known and recognized it has become a 'thing' in popular culture, a label, with it's share of stereotyping, often negative. So in that sense one must decide whether to be public or private about it. As with any other medical condition it really is only your own business and within your rights to keep it to yourself if you choose, except in rare circumstances where it is legally required. And that is only if you choose to persue a formal diagnosis. There is a great ammount of variation in autistics and many choose to remain only self-diagnosed. Often a diagnosis would provide no practical advantage as they do not need the support others might, say in the ASD 2 or 3 catagories. One still can access all the free material to learn about autism and better manage/understand themselves.

 

[FindingAmelia]

I don't really see adjusting to fit in as faking. You know everyone, NTs included, has to adjust to do so (fit in to work within a society). The norms are to an extent determined by where and when you are. For example you would have to do things differently, follow different protocols if you were brought up in New York City or Papua New Guinea. And as we are not nearly all physically the same or have the same abilities we are not all mentally the same either. We all are just trying to make our way in the world such as it is.

Now that HF autism is more widely known and recognized it has become a 'thing' in popular culture, a label, with it's share of stereotyping, often negative. So in that sense one must decide whether to be public or private about it. As with any other medical condition it really is only your own business and within your rights to keep it to yourself if you choose, except in rare circumstances where it is legally required. And that is only if you choose to persue a formal diagnosis. There is a great ammount of variation in autistics and many choose to remain only self-diagnosed. Often a diagnosis would provide no practical advantage as they do not need the support others might, say in the ASD 2 or 3 catagories. One still can access all the free material to learn about autism and better manage/understand themselves.

Thank you for your insight! I think, especially for my oldest daughter, that the ability to give her a name to her struggle and something "tangible" will be of great benefit to her. She's also quite into medical things, and I think she would devour books, videos, articles, etc. about her diagnosis and that it would help her to understand herself and be a very positive piece of knowledge to have moving forward. At this point, not having a firm diagnosis, I am having a hard time explaining to her why she's struggling. She's very literal and needs more than the vague "We all have our challenges, and this is an area that's challenging for you." Especially when the challenges are so broad and far reaching. That sort of explanation isn't really cutting it anymore.

I'm also hopeful that diagnoses will help curb the adult comments she often gets from other people about "How old are you?" and other little negative remarks because they see her behaviors as inappropriate or immature for a girl her age. I feel like I'd have more firm ground to stand on as I advocate for her with others.

I would love to hear opinions and suggestions on my thought process though!

 

[Tom]

I'll have to leave that to others. Thought processes are not one of my strengths, particularly the feminine modus operandi which is real spagetti to me.

 

[Aspychata]

Welcome, great you are here!

 

[Thinx]

Hi and welcome. Well people new to the issues do seem to say they expect a diagnosis to improve aspects of how they or their child is reacted to by others, but I think it's to some extent dissapointing when you realise how ill informed so many are, that the label just puts one into a stigmatised category.

If you think there are definite benefits for your daughter in terms of concrete useful help she'd receive, that's probably a good reason to get diagnosis. Hoping people will understand and be nice if you say she's autistic isn't a well founded hope unfortunately. People don't know what it means, and they see the label as denoting a disorder that makes the person abnormal. I would keep it private, really it's her business I guess.

Similarly, it's great if she sees it as a useful explanation, but some may also feel lesser, by having a diagnosis, and need help and support with that.

For high functioning people, as has been noted, diagnosis is more a matter of preference, but understanding about autism and it's effects enables us to have strategies around what's hard for us, and for me it helped me cease pursuing goals that were unrealistic, and find ways around instead. My brain is different, and can do some good stuff, but in some areas it doesn't do what neurotypical brains do.

Does what the older 2 are up against have any impact on your younger ones, btw? It sounds like you all must have to pitch in to support them well. Covid 19 isn't helping I imagine!

I hope you enjoy it here, people are friendly.

 

[Nitro]

Hi Amelia

 

[Giraffes]

Agree with Thinx that diagnosis as a journey to explore self and being is useful but in my experience it isn't prehaps true any-one will find understanding and consideration i now think that comes from the person and acceptance/understanding of who they are and a willing to adapt or not to the general acceptance of 'normal'

 

[unperson]

Knowing something about the condition helped me a lot, gave me a bit more objectivity and a social tribe.

 

[clg114]

Welcome to Autism Forums!

 

[Wolfgangus Faldestolius]

Welcome! I have known loads of fabulous autistic ladies (some of them "undiagnosed"). I sincerely hope your professionals will be constructive and imaginative, but especially that your DDs will feel enthusiastic to own their faculties and their functioning and not be ashamed of their special interests and areas of flair. Because those are like our anchors & grappling hooks that we pull ourselves along by! The main door opening is what we do for ourselves and (if applicable) what our family do for us and how we enhance our self respect so we can grow to do things for & with the people around us, unashamed of individuality. (I was undiagnosed till middle age and backward in relating.)