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Hi - new and looking for advice

leehart

Well-Known Member
V.I.P Member
Hi all, I am 36 and have a young child with autism. I didnt know much about autism until my child came along but as I learnt more about it I began to see myself in those descriptions too. I am looking for advice and to see if my experiences echo with anyone here. I did an AQ test just out of curiosity and got 38 which surprised me (I know this isnt a diagnosis).

As long as I can remember back I have struggled socially. Both primary and high school were not good experiences, being relentlessly bullied and having few if any friends. It didnt help that other areas of life were unhealthy and lots of conflict was happening in other areas of life too.

As I grew older anxiety and depression both took a grip on me. I retreated further into myself. One thing that stands out is that it is often said that folks high on the autistic spectrum have no imagination...I am the opposite I survived by living in my own world as much as I could!. Thats not to say I had no friends but those relationships could often be tense.

As I became an adult and especially at college I learnt how to play a role to be accepted. I was able to fit into the bigger group by behaving as they do (which wasnt always too nice!). I do not like social situations and would rather avoid them. New people make me anxious.

As I grew up I developed an idea that lack of conflict = safety and due to this even today I still strive to keep people happy. If there is conflict around I dont cope well and find it very unsettling. I can be empathic towards others and can read people ok (though not always!) i do think though I have learnt this in order to try and preserve harmony.

If i say something inappropriate (which is rare as I am very careful with my words as I dont want to upset people) I am devastated by this. As an adult I feel I go from mask to mask, if I am in a situation and I have a role, IE my job, I am generally fine and confident, but if i am with people without a role, I dont know what to do.

Sorry for the unloading of stuff but if any of that relates to others experiences that would be insightful.
 
wish I had a child as well and I could really understand what is happening to you! but I don’t !have children .
I was diagnosed at 45 ,if and when you get the diagnosis ,make sure the person has experience of autism in women ,try to avoid psychiatrists(as they can prescribe drugs they don’t seem to have the experience that psychologists have).
i’m in the UK so it was free !but !that still means you wait a very !long time and then there is no !insurance to pay for services! and there are very few services for adults, if any ,especially in the north-east of England.
I was diagnosed !because I was having a really bad !reaction between two drugs !and my GP perceived that I was autistic ,sickeningly for me ,five years before ,they had inferred I was a hypochondriac.
 
i’m in the UK so it was free !but !that still means you wait a very !long time and then there is no !insurance to pay for services! and there are very few services for adults, if any ,especially in the north-east of England.
I was diagnosed because I was having a really bad reaction between two drugs and my GP perceived that I was autistic sickeningly for me five years before they had inferred I was a hypochondriac.
Hi, I am sorry you had to go through that, glad they got to the bottom of it though!

I dont know if I am going to seek a diagnosis at this point. My plan is to get to know people here and see if my experiences connect with any here. I hear a lot saying that they feel they have never 'fit in' which is very much been my experience in life. If I feel there is value in diagnosis i might reconsider.
 
This happens so often. Welcome to this forum and I hope it proves to be beneficial.
 
Hi, I am sorry you had to go through that, glad they got to the bottom of it though!

I dont know if I am going to seek a diagnosis at this point. My plan is to get to know people here and see if my experiences connect with any here. I hear a lot saying that they feel they have never 'fit in' which is very much been my experience in life. If I feel there is value in diagnosis i might reconsider.
Bureaucracy loves paper and diagnosis ,employers on the other hand pay lip service at best,disability benefits(oh the irony ) have the bureaucracy disease,my story got worse. I struggle every second ,lost the meaning of the word day ,apart from children I've experienced all you have and more ,then I have added situation of a very nervous immune weakened cat and another mentally ill cat good immune system ,sleep is a treat
 
@leehart


I relate in many ways.

We have two small children diagnosed with Autism, but I am not sure if I am on the Autism Spectrum, as despite several Autistic traits, like being highly detailed, very shy and avoiding of eye contact, and with some tendencies that appear either ritualistic, or because of some perfectionism, I lack other traits, and have other traits that casts some doubt.

I too have avoided conflicts most of my entire life, and with often a desire to please or to avoid potential further harms. Whether this was because of very poor social self-esteem and low feeling of worth growing up, a need to be liked, negative thinking, a need to fit in, a desire and need not to be harmed anymore, some genetic issue, or all of the above, I am not entirely sure.

As well, I have a very empathetic and imaginative side, and who is to say what attributed mostly to that, but I suspect it was the traumas I faced because of my very abusive parents and not wanting others to be harmed like that, and from witnessing my siblings and mom also being harmed too, and feeling no control over that. I learned to care, bat around ideas in my head, and to daydream.

Everybody processes abuses against them differently. Some may turn inward and avoidant like me, and with desire to avoid pain and seek more peace or pleasure to cope, whereas others can turn more aloof, angry, or even narcissistic, with my identical twin being the distant former, and my sister being the entitled, and supposedly superior one, from what she says.

I never had many sensory issues, other than being very hyperaware of everything. I know where everything around me is, at all times, and I can read people very well. I often look beneath the surface and do not assume what I see on the outside to be true. I focus on details most would not focus on or understand.

I too had little or no friends in school, had feared much saying and doing the wrong things, was very introspective, bullied a lot, and developed much anxiety and depression, especially relating to my feelings of inadequacy in terms of my social functioning, and for feeling very different from others. In my case, again, I suspect the abuses I faced largely caused this.

Although one doctor did diagnose I had mild Autism, based on observations, I did take an online test and I actually scored low for having Autism, and with me having a much higher neurotypical score. I can understand figurative language, idioms and humor very well, and I have no motor issues, or stimming issues. I had few to no sensitivities, other than in the past extreme sensitivity to rejection, critiques, etc.

I was never able to fit in and mask in school and college, despite desiring that, as I growing up did not have that strength or ability there, for the mentioned reasons of me being too shy, fearful, insecure, and avoidant. Avoiding others was the best way for me to cope, as otherwise negative thoughts inside my head would appear or manifest, knowing approaching others would cause that. If one approached though, and there was no escape, I was very brief and polite.

I desired mainly to find someone like me, up to my mid twenties, knowing I could not change who I was. I never found that person, so I lived alone through my college and university years, taking part time study mostly because of an inability to concentrate and be motivated, because I knew the education would take me nowhere. I was single and alone until age forty, and I through the years was trained to do everything myself, as it was the only way my needs would be met.

Eventually, the anxiety and phobias of dealing with social others became to great, that I started throwing up many times daily. This lasted a year or two. I knew this was when I had to see if I could fit in better or mask more, through self-help techniques to worry less, think more positive and to love myself more. I did numerous such techniques, and this gave me more internal strength, more functionality, and more hope.

Prior to those efforts, the only confidence I had was that I felt good that I survived all that bad, and I knew that I was a good and kind person, but just with perceived many social flaws. Finishing college though gave me more strength and belief. It made me feel that my parents and how they raised me were not going to define me, and I started to be motivated more to do more things.

While I cannot say what you have or do not, I can just say it would not surprise me if you either had ASD or did not have it, or had something else, based on all you said. But, I am not going to tell you to go to a general or family doctor, or one less qualified than that, either, for such issues, as I feel they do not have many answers, with regards to mental health diagnoses. Perhaps they could do a referral, if you ever desired.

Even psychologists and psychiatrists can be wrong in their opinions, and it happens all the time, unless they are very thorough of past and present history, detailed, analytical and open minded, and very knowledgeable of all similar sign and symptom conditions, as certain conditions can be mistaken for similar others, and as comorbid conditions may or may not occur, if not one possesses not enough signs and symptoms to warrant some diagnosis.

My recommendation for those who want a diagnosis, if not satisfied with self diagnosis, through much research, is to be wary of doctors who do not listen, analyze well, and that seem closed minded, in no hurry, or who says it does not matter what the diagnosis is, as “we just treat the symptoms.” Those are some red flags. Since when must anxiety and depression for instance be treated the same way, as it would seem one would need to know if there was genes or environment involved, to give the best or most natural treatment.

Unless the doctor is a specialist, like an Autism Specialist, or trained in personality conditions, or other, I have zero confidence in non-specialist doctor abilities to analyze mental health conditions, based on what I know about their lack of such training, their incompetence for such issues shown, and based on all I have seen through not only our family’s extensive dealings with all types of doctors, but after 30 years of writings and analysis of others with different conditions, who many were obviously underdiagnosed and/or misdiagnosed.

I will say our first child with Autism, diagnosed at age two, was correctly diagnosed by our local school system team of mental health professionals, after several pediatricians and family doctors refused to take seriously all the signs and symptoms shown and that we summarized. His diagnosis then was verified by numerous other specialists. Our second child was not diagnosed til about age three and a half, though we as parents knew he had such by age two. At least ten prior medical professionals had no clue about this 2nd child’s Autism, despite knowing his brother had it, we also suggesting this other son had it from his nonverbal status, and from him having all the other detailed core components, and despite stimming and other Autistic appearing observations, that were seen in the clinics attended.

The goal of each such dismissed pediatrician, family doctor, and service provider was to either look in just eyes, ears and mouth, and to play the waiting game, or to say boys will be boys game, or in the latter case, regarding service providers, to treat just what they specialized in, and not care about diagnostics. It does not take a rocket scientist to know that a nonverbal, stimming child, one that had numerous extreme sensory issues, motor issues, loved lining up all objects, had atypical interests, had numerous delays, and that had an Autistic brother, that they should be evaluated for Autism. None had the common sense or competence to do such.

My wife had been misdiagnosed as having certain conditions for twenty five years, thus being given the wrong treatments. Know wonder her conditions never improved under their care, regardless of medication attempted and therapy attempted. She had been hospitalized numerous times over those years, and her conditions only worsened severely under their care. Doctors will never admit to any wrong diagnoses. Only a few years ago did we figure things out, through much research, regarding my wife, and then 9 hours of neuropsychological testing confirm the severe ADHd. Things are fine only now!

In my case, I was always diagnosed as having mainly either Social Anxiety Disorder, AvPD, and OCD, with the one exception being the one doctor saying I had mild ASD. I was not diagnosed until my mid twenties though, for those. After careful analysis, and because of our children’s Autism diagnoses which are certainly correct, because they have all the core components of ASD, I cannot rule out the ASD for me, but my other diagnoses seem just as, if not more fitting.

Regardless of the diagnosis for me, I am happy in life, and I no longer need to fit in with others, as I improved to my liking regarding my self-esteem, worrying less, and thinking more positively. I am now way less caring of what others think of me because of my more positive and functional ways now, and as I have a life with my family now. I could care less if others see me as working, successful or not, and I do not fret over rejections or critiques anymore.

I am still introverted, and that is fine with me, and I love homeschooling our children, and writing and helping others.
I do not need more others though, like which was the case in the past. And so I do not obsess over or avoid all conflict anymore. I not only have more confidence in how to get out of any conflict without worry, I have more confidence in my convictions, and more confidence in who I am. And I am more positive or not worrying when negative things occur. Life is good.
 
Wow, thank you for that detailed reply @Dadwith2Autisticsons! I can relate to a lot you have experienced and have largely written off any traits I have due to my past. It's only since I have my child that I've started to see connections. I will stick around here and chat with folks and hopefully begin to develop a better idea of things and what I ought to do if anything.
 
Hi leehart

welcome to af.png
 
Wow, thank you for that detailed reply @Dadwith2Autisticsons! I can relate to a lot you have experienced and have largely written off any traits I have due to my past. It's only since I have my child that I've started to see connections. I will stick around here and chat with folks and hopefully begin to develop a better idea of things and what I ought to do if anything.

Yes, stick around, it is a nice place. Also, as if I understand correctly you now say your past seems not to be the reasons for several such issues you have, there certainly can be a genetic component, which I have not ruled out for me as well. Like you and I, there are others here either not totally sure about their diagnoses, or are self-diagnosed, or want to learn more, so you will relate to many here, from what I see.
 
Yes, stick around, it is a nice place. Also, as if I understand correctly you now say your past seems not to be the reasons for several such issues you have, there certainly can be a genetic component, which I have not ruled out for me as well. Like you and I, there are others here either not totally sure about their diagnoses, or are self-diagnosed, or want to learn more, so you will relate to many here, from what I see.
Thanks, yeah I will be. As I reflect on things more seems to be clicking together into something. It's really helpful to ask questions about things and see others views.

I definitely think when I look at my childhood and socially it was such a big struggle. I really struggled to create friendships and part of that was because I was in my own world. I still struggle with friendships and have few if any just now. I love the concept of friends but find it exhausting at times.
 
Thanks, yeah I will be. As I reflect on things more seems to be clicking together into something. It's really helpful to ask questions about things and see others views.

I definitely think when I look at my childhood and socially it was such a big struggle. I really struggled to create friendships and part of that was because I was in my own world. I still struggle with friendships and have few if any just now. I love the concept of friends but find it exhausting at times.
If death means I’m not exhausted then I’ll be glad to be dead ,its got to be better than pain and how I feel and being critiscised every single day or gossiped about .
 
Thanks, yeah I will be. As I reflect on things more seems to be clicking together into something. It's really helpful to ask questions about things and see others views.

I definitely think when I look at my childhood and socially it was such a big struggle. I really struggled to create friendships and part of that was because I was in my own world. I still struggle with friendships and have few if any just now. I love the concept of friends but find it exhausting at times.

Absolutely it can be draining. The attempts I tried to mask, fit in, and appear sociable were even more draining, as that was not me at that time, nor what I felt I could be for any extended duration, but someone I dreamed to be so as to just not feel too lonely or different. Even if I felt someone could relate back then, I was not the initiator type then, and worried of rejection from them because of their own fears or condition. So, I never tried, and the another I thought was a friend perhaps got bored of me not expressing in-person much.

So, I started focusing on figuring me out, helping myself a bit, but realizing some things I could not change or should not change, and then thinking things would fall more into place.
And they have for the most part. This does not mean I have an easy life, or that I am totally happy, but just I feel more in control of my feelings and situation now. I do feel I am missing something though. I have a new family, but do not have many others I talk to outside of that, to discuss interests, issues, etc. And I am not pursuing others things I desire, because of other responsibilities.

Currently, my wife and I are homeschooling our children, and I love teaching our oldest son with his singing, too, so I have not posted many public posts daily, and will post thus just privately mostly, until the summer again. Like I have said many times, any adult from this forum is free to pm me anytime, if they want to chat, get support, ask questions, vent, or who knows make a friend. I am easygoing and let people be themselves, regardless of condition, as I, my wife and our two sons understand well not being understood and accepted in society. I will always respond to any pm message within a day, and sooner if it is urgent.
 
Have you read the DSM-5’s criteria for autism spectrum disorder? There’s quite a bit more to being autistic than just poor social skills e.g. sensual sensitivities, repetitive behaviors, etc.

Oh, about autistic people lacking imagination: it’s actually the other way around. Many of us are extremely imaginative, prone to fantasizing, and in general live in our heads.
 
Have you read the DSM-5’s criteria for autism spectrum disorder? There’s quite a bit more to being autistic than just poor social skills e.g. sensual sensitivities, repetitive behaviors, etc.

Oh, about autistic people lacking imagination: it’s actually the other way around. Many of us are extremely imaginative, prone to fantasizing, and in general live in our heads.
Thank you, yes, I've done a substantial amount of reading on autism due to the journey with my child, less so with higher functioning ASD like Asperger's though.

That's really helpful, for me my imagination has been one of the things that sustains me, I tend to retreat into it to get away from the world.
 
one of the more recent theories on autism is hyperempathathy, where we sense too much and retreat into our minds to escape the overload. a large imagination can encourage this as well. there is a condition called maladaptive daydreaming, which is withdrawing into your head so much for daydreaming/imagination that it interferes with your life, and is heavily associated with autism. I'd think a heavy imagination is actually more common with aspies than NTs.

one of my parents' concerns was about me staying in bed all day, but I was actually just exploring fantasy realms.
 
one of the more recent theories on autism is hyperempathathy, where we sense too much and retreat into our minds to escape the overload. a large imagination can encourage this as well. there is a condition called maladaptive daydreaming, which is withdrawing into your head so much for daydreaming/imagination that it interferes with your life, and is heavily associated with autism. I'd think a heavy imagination is actually more common with aspies than NTs.

one of my parents' concerns was about me staying in bed all day, but I was actually just exploring fantasy realms.
I totally get the appeal of that. I tend to have an imaginary world I go into whenever I can, especially to fall asleep at night and when I am stressed out. What that fantasy is varies, mostly something sci fi for me.
 

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