High Functioning ASD, what are the benefits of diagnosis?

Post Reply New Topic

Hi . I am a 46 year old woman, who recently after taking some online tests, found that i scored highly for possible ASD.

I have always realised I was diff, but learned to deal with it, and my life works reasonably well.

Part of me would like to know if I have ASD, which makes sense.

I am just looking for other members of the communities opinions on the Pros and Cons of having a diagnosis when your life runs relatively smoothly. ( Not perfectly, but quite calmly )

I wanted a diagnosis to get help, because my life's a mess. I'm getting therapy so that I can learn to function properly. If your life is going well, you may be unable to get a diagnosis if you do not show that it causes impairments.

The only reason I could see to get diagnosed when your life is going well is to know why you are different, and to perhaps know if you have an increased risk to have children with ASD.

Knowledge is power

I did not know anything about ASD before my diagnosis and it changed my life, however you already know things about it and get do further research so I don't know if it will be as big of an impact for you.

If parts of you want to be sure then just get a diagnosis.

Hi

I already have kids. 6 of them to be precise.

The oldest is a little OCD and suffers depression ( Male ) Scores highly on the AQ test, but not formally tested for ASD

The next has BPD ( Female ) Scores Normal on the AQ test. Formally tested for BPD

The next has Classic autism and complex learning needs ( Male ) ( Chronic constipation needing meds daily ) needs 24/7 care. Formally tested for ASD

The next has quite severe ME ( For 6 years now )with anxiety and Stress related tics ( Female ) Scores normal on the AQ test. Formally tested for ME

The next seems in generally good health ( Female ) Scores Normal on the AQ test

The last has Aspergers syndrome ( Male ) Scores highly on the AQ test, he manages without help. Formally tested for ASD.

With having 2 possibly 3 sons on the ASD I think maybe I have a higher chance of also having it ?

Originally I might of thought it passed only from the paternal side, but 3 sons have 2 diff dads.

Researchers actually observe that women with ASD are much more likely to pass it on to their sons. Well I should say that in families where the mothers have a form of ASD, there are statistically more sons with ASD than average. Men are significantly less likely to pass it on to their children. Daughters are in any scenario the least likely to express ASD, which also shows up in the statistics.

The cause is complicated, but there's a strong presumption that it's in a way related to X-chromosomes. Since men only have one X chromosome, any recessive defects causing ASD will not be compensated by dominant genes on another healthy X chromosome like it is in women. It's believed among those researchers that's the reason women are less likely to express ASD and also why women are more likely to pass it on to sons.

Makes sense.

Thanks

As a child were you examined by a psychologist or anything like that? Something I'm always curious about with HFA adults.

Yes, but when I was that age (early teens) Aspergers Sydrome was brand new and completely unknown, especially to someone who looked 'normal'. That's not even getting into the fact he was COMPLETELY, ABSOLUTELY USELESS, calling my frustrations with answering the same questions 4 times as 'being difficult'. I have seen three as an adult and two of them gave me the preliminary screening and I scored off the charts for it, as well as high for anxiety and depression. Few professionals deal with ASDs in adults in my city but I might still try once I get some insurance coverage just so that I will know in case I have a child.

I'm at the point where it's literally a formality at this point. If I was told that I did not in any way have it I would call the medical professional a quack. Even though I am mild I am about as textbook as you can get. Since there is no help available, what's the point? Given how 'private' medical information seems to get out (like the US Border Patrol having access to some "private" medical records of Canadians), I don't need my insurance rates tripled (or cancelled) in the future because I am "high risk" (even with a perfect driving record) or denied life insurance because of the higher rates of suicide.

Well, from personal experience.

I was diagnosed at age 28, when things were running relatively smoothly. 5 years later I had lost my well-paying job and my apartment due to a complete stress-related meltdown at work.

You obviously have more life experience than I had when I got my diagnosis - and thus better at avoiding potential pitfalls in life - but if you do have ASD, it might still be useful to find out so you can avoid situations that may lead to the same outcome as I experienced.

Hi, I'm female and 46 too (from England - East Anglia) and I got a diagnosis last year. I'd struggled with employment difficulties all my life, with self-care issues, with sensitivities to sound and people and busy patterns and with significant social and communication issues too. Then a friend who I went on holiday with - me and my son and her and her son - mentioned that I did all the same things as her son (who is autistic). So I took a test online and scored very high. Then I saw my GP and she gave me another test which I also scored very high for ASD. Then she applied for funding to get a formal assessment at the hospital. It took about 6 months but I ended up with a formal diagnosis.

I think the cons of a diagnosis are that sometimes you get pre-judged by people who make assuptions about you based on other experiences they have of ASD. For example an aquaintance I knew had previously taken a group of young people on a holiday and had had a problem with a young man on the spectrum and ended up having a big shouting match with him and having him go into a meltdown. Now this aquaintance has a history of being quite judgemental and angry at times anyway so I'm not convinced that the probelm was the fault of the young man with ASD anyway. However, because of this when he discovered that I am on the spectrum he began to tell people the story about the holiday and tell them to steer clear of me as if I'm some kind of problem person and yet he doesn't know me - he has one experience of someone on the spectrum and assumes I'm the same. This can happen in professional settings too and can affect one's ability to get an interview for a job and to get the job.

I also felt quite sad after diagnosis for a while as I adjusted to the reality of what's wrong with me - i.e. what my deficits are. It's one thing to know that you're not great socially but it's quite another to have a recognised disability. This did pass though and generally I've found that, for me, the benefits of diagnosis outwiegh the problems.

The benefits I have are:
That when I'm seeing a medical doctor about something I can explain about the autism and then they always seem much more willing to answer my questions so I end up knowing what's going on with my medical issues properly and I'm in a better position to manage my health more effectively.

That if I need cardioversion in Resus for my heart arrythmia they can understand why I don't like them staring into my face.

That I can get help with the social stuff and the anxiety I have about loud noises because the label 'autistic' helps professionals know where I'm coming from.

That if I mess things up socially with friends, because they know about the autism they are more willing to tell me I've made a mistake and I can then put things right and do my best not to do that again.

It also helps me understand why I get miscommunications sometimes with various authorities - e.g. the tax people or the police or the local council which helps me to understand why things go wrong and gives me a way of working through these problems and getting things sorted out so everyone is happy.

And most of all, I understand myself properly now, I make sense to myself and I can live better with myself than I could before.

Hope this helps!

I'm going to try for an official diagnosis because I suspect my mouth could have cost me jobs. That, along with judgement and time management issues... so I'm hoping a diagnosis will allow me accommodations at work.

It often is pre 90's. But what it shows is that they detected something.

No, not in my case. My parents eventually found out how bad the bullying I endured was (hint: it was horrific) but I suspect everyone thought I was making these stories up. After all, I looked like a bully, being 6'4" at 13, not a victim and the bullies were master manipulators.

I suspect the psychologist came to think I was self-harming or something like that. No, it was the f**$# bullies and I started getting angry when he asked me to tell what how I got bruised again and again and again. It literally was beyond anyone's ability to understand that I was being physically bullied, even by honor roll kids with perfect attendance. I do remember a nasty bee-itch of a social worker visited my parents and refused to take her shoes off before sitting everyone down in the living room. She stayed about 5 minutes.

The benfits ofa proffessional diagnosis ar literaly the ability to obtain benifits and services and validation for your suspicions if you are the type of person that needs that.

In my case I found out I was not as high functioning or mild as I thought.

I just want to find a way to do better. Whatever my diagnosis will be, it will be a step in the right direction. Tired of bandaiding the symptoms. I want to attack the root cause.

Get a job referral service that won't tell me something stupid like "Dumb Down your resume".

Possibly Job retraining into a field I can perform well in.

Coaching of some kind to refine skills or teach coping techniques.

Rule in or out an co-morbidities.

Too old to keep guessing every day.

For me, the most important think to come from diagnosis is to know myself better. In particular, I've needed treatment for depression and anxiety all of my adult life. I now feel I can tackle that much better, as I am aware of which symptoms are from those treatable mental illnesses, and which are an innate part of being autistic. Being able to pass that information to my doctor and counsellor has enabled me to get much more effective treatment.

As far as downsides go, I think the only one of any importance is that you may get a feeling of, "whoa, so this is forever then?". But it would still have been there forever whether you were diagnosed or not - the diagnosis does not in and of itself change who you are.

As to other people's reactions - don't feel obliged or in any rush to disclose the result to anyone. It is none of their business unless you make it so. (Note however, I'm from the UK where we have universal free healthcare. For those in countries that rely on individual health insurance cover, I understand that disclosure issues may not be quite as simple.)