I originally put this question in a post, but realised that may limit the amount of people who see it, so now posting. I am new to this forum, sorry if this is long winded!!
Hi,
I was wondering how you go about getting a diagnosis as an adult. My son has aspergers and was diagnosed at 10 years old. We were referred by gp to paediatrician, after school suggested it would be beneficial to him to get diagnosis as he moved on to secondary school. I had always suspected he was on the spectrum, but didn't really think much of it, but it has helped to ensure he is supported at school etc.
Anyway, getting to the point. My brother has more extreme characteristics than my son, he is 33. He has a miserable life, has no friends to speak of, never had a girlfriend. Hasn't been able to hold a job, so has not really worked for 15 years. He used to drink heavily to medicate himself, but gladly has given up, and hasn't drunk now for more than 5 years. He does smoke cannabis, which he claims to need to keep himself from killing himself. He has seen a psychiatrist has been given anti depressant s, for depression and ocd. Although he says the Dr just dismisses him saying he has a personality disorder, and social depression.
I am convinced he had some form of ASD, he had problems since he was tiny. My mum agrees but says I shouldn't say anything to him as it might upset him. He already has no self confidence, he had teenage acne, which has cleared up but he claims he is disfigured and ugly.
I think if we knew how to get him a diagnoses he might understand why things have been difficult. When the Dr explained my sons diagnosis to him, my son immediately said, well that explains a few things. He was relieved because he had a reason for thinking differently to others.
Would be interested in hearing others experiences.
Thanks
E x
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Wass71
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If you will allow me, if it doesn't bother him, it really doesn't need a diagnosis.
In my case, especially for the last 30 or so years, I have "felt," as if there was something different about me. I've tried to explain this feeling to other people, who always looked very condescending when I spoke about the experiences I had. For instance, I described what I call "reverse deja vu." It wasn't the feeling of having done something before, it was as if I knew I was "about to do" something; as if, for instance, I 'saw' it in my mind before I actually acted on it, creating a brief second "gap" of emptiness, like an undescernible pause in the conversation that only I could feel.
So, I moved to a much larger area with more "up-to-date" medical knowledge and saw a therapist for some anxiety issues I was having. After about six sessions, she suggested I needed to be on medication and had me see a diagnostician (which is very common when you enter a new practice).
After an hour of questions and answers, describing my medical history, mentioned my son's behavior as a toddler and youngster (I've been told) should have placed him on the ASD spectrum when he was little, my family history, my children, and then me, we all had similar issues that didn't show up in me (at least to my knowledge) until I was an adult, I saw in them as children.
She asked me if I had ever heard of Adult Asperger's and she told me I was a classic texbook example EXCEPT that I 'presented better than others,' meaning from looking or interacting with me, no one would know.
However, when I went home and delved into research and started reading stories about females with Asperger's, I realized that all these women had experienced the same awkwardness and aloneness that I did (and still do).
I'm finding that many of my medical and mental health issues which I've been complaining about (and others have been dismissing as part of something else) were all related. This is only important to me, because it explains WHY I felt the way I do/did and because I'm a compulsive overthinker.
For the past month or two I've been wondering if my life would have been different if I was diagnosed earlier, and I can't say that it would. I think it would have made me and others to be more of "test cases" than the unique people we are.
Everyone says normal is what's normal to you. If your brother doesn't think he's abnormal and isn't looking for answers, giving him a label isn't going to make things better. If anything, they might help understand a "few" things, but even if he has 10 or 100 questions about himself answered, if he doesn't care or isn't interested, it won't matter at all.
I hope you don't find this rude, I'm writing from the heart.
My husband was diagnosed in his 60ies. We had struggled to stay together all our married life as his behaviour was so difficult between us. To others he seemed more or less ok. He kept saying that if I left him he could be happy as he rejected 'normal' things that I said, that I'd say to a husband. For example, if I said that I can't find my bag or whatever, he'd get quite annoyed and say "I have not taken it!!" He still can't have a conversation as he wants to talk all the time, not have me chipping in, as is normal in conversation. It made a waste difference to him and with a lot of pushing he managed to get a Social Worker to assess his needs. Then he also got a Support Person from the National Autistic paid for by Social Services for 2 hours a fortnight. This is very helpful for him but it was a long process and I had to fight to get it for him and then got it for another young man or 26 for 3 hours per week.
All the very best,
Have a good Christmas and all the best for the New Year.
Thanks for you reply, it sounds like you had a battle to get support. Really glad you persevered, I'm sure that has made a positive difference for both you and your husband.
Thanks just diagnosed for your reply, don't worry you I don't think you're being rude. I understand what you are saying, but the thing is it does bother him. He feels the stigma of mental illness, especially when the government and media were gunning for people "on the sick", those claiming benefits forced to attend medical assessment s. He was so stressed by it he cancelled his claim. He has zero income, my parents are supporting him, but he has never contributed. I think getting a diagnosis would allow him to have more acceptance of his own normal, rather than thinking he is " mental" (his words not mine BTW).
The only reason mum is cautious is because she has wrapped him in cotton wool his whole life.
Anyway. I'm grateful for your point of view, and interested to hear your feelings on the benefits or not of diagnosis for you.
If he, like I, needed acknowledgement that I wasn't "crazy," and that everything I was experiencing (throughout my life) actually had a reason, then by all means, he should speak to someone.
I got so tired of explaining myself, and receiving all the diagnosis, of depression, anxiety, OCD, ADHD, etc., etc., etc. and 16 medical diagnoses and counting, I "knew" that these weren't individual issues I was having, that they had to be part of a "big picture."
I often watched the TV show "House," and I even told my doctor that I felt like I needed someone who would look at everything I was going through, and figure out what the common bond of connection was.
She knew almost immediately. Apparently, no matter how different we appear on the outside, that when asked certain questions, many of us answer almost identically alike. In fact, after my second meeting, she told me she had been treating a young man with ADHD, but his answers to her questions were almost verbatim to mine.
According to my therapist, I am able to "describe" my thought process very specifically, which is very easy for her (and apparently others in her practice) to envision what I'm going through. She said she's able to use that visualization with other patients.
For instance, I can't draw a picture, but I can explain, down to the detail, what it should look like if I had to describe it (that's why writers like me are assigned artists -- we "describe" and they draw).
So, if it would make him feel better, by all means, encourage him to be seen. While I'm told there "is" a very expensive test for youngsters, it is easier to diagnose us as adults, even though the symptoms have been with us our whole lives.
The tests, I believe, are for children who are being evaluated on the spectrum.
I am so glad that at least you son has been diagnosed at an early age, as it will help him a great deal in understanding his own personality as well as it does mean that his education and his future employment are bound by the law to assist and consider his needs... That is a big feather in your cap and I promise that it will also allow your son to become a better person in knowing that he has a gift that makes him stand out in any field of interest he has
From experience, I know that GP's are ill supported in mental health and will just shove pills in his direction for a couple of years and then just take him off them. I was on them for 10 days and in those ten days, I went through the pain of the chemical reactions in my head creating terrible sensations and hypersensitivity to movement and feeling myself being chemically coshed into a corner of my mind... The pills just smooth out the manifested part of being autistic "E" and although I have been told on the right pills, it is a Godsend, but I was so aware of that fact that it was bypassing my ability to help myself, so I discontinued the pills and started dealing with my gift from a logical aspect (Meaning recognising an issue and working with them)
The weed is a stop-gap to be honest....Yes it gives him the feeling that it helps because it takes away his mania of being who he is "E". I was smoking weed for 15 years before I got diagnosed and then after coming to terms with my gift, I gave it up... I was never on the booze though, which I am grateful of. I used to smoke weed to socialize, interact and calm my mind down... But as it turned out, it was the weed that was making me panic most of the time anyway. I gave it up nearly 2 years ago (711 days) and since I have knocked it on the head, I have gone from strength to strength, so there is hope !
We aspies have a low self esteem due to our need to be perfect at everything we do and also because we are so aware that we are different, but not understood...That is why aspies smoke and drink.... Just like anti-depressants, it prevents us from accepting responsibility of ourselves. Your brother needs to see a diagnostic consultant who specialises in ASD gifted people and that diagnostician is the only person qualified to make the correct determination of Aspergers !
I was 35 when my sister told us of my nephews diagnosis whilst at school and it was my big sis that put the thought in my head about my condition "E". I told my employer, got in contact with the NHS and after 2.5 years, was no closer to getting a diagnosis, so my company and I came to an agreement and went private... 3 months later I had 2 sessions with my diagnostician and "Presto", I was diagnosed.
My company made radical changes to the HR dept to suit my needs, they got a trained psychologist on the occupational health team and since then, they themselves have seen a rise in employee mental health, so it was a win-win thing all round.
I have years of experience in dealing with mundanes and health services alike and without putting you off.... They are as yet ill equipped to help an adult with learning disabilities "E".
The first step to getting the ball rolling is to want the help and to feel that there is light at the end of the tunnel... My diagnosis and changes I made in my life have given me a purpose, I care about myself now and even better, I have found my soulmate too.... A good life is out there if we make the effort "E".... It's taking that first step that is key to having the dagger in our mind removed.
Take care and please do not give up on your gift of being one in a family of special minds :^)
Happy Christmas and may 2016 be the year that makes a difference to you
Regards
J
(Proud to be different because different is what is special)
Thank you so much for your reply. It sounds like you have worked really hard to become the person you are, you should be proud of that achievement. It really gives me hope to hear your story. I desperately want to help my brother, because I'd love him to feel that he is worth fighting for, to have a life. Mainly to be comfortable in his own skin.
Hi, I was diagnosed with aspergers last Oct aged 45. It was both upsetting and also a relief to know I wasn't going mad. My life sounds a lot like your brother's except I have children. I am on my own with them (youngest has autism) as my ex accused me of having narcissistic personality disorder (aspies get that a lot I've heard). Anyway I was referred by my doc and waited nearly two years for an assessment..and they confirmed it. I don't have friends and don't go out much I'm too awkward and shy. I get depressed a lot and hide it for my kids sake I cry when they are at school feeling thoroughly useless. I wouldn't wish aspergers on anyone because you seem normal to everyone it's exhausting trying to fit in and you never do.
Thank you for such great information Ryan. I'm very grateful.
Best wishes
E
I was diagnosed privately just because after my sons went through the process I saw patterns that echoed what I went through as a child and I did it for me. A diagnosis if private isn't usually accepted by the nhs. Although the lady who diagnosed me works for the nhs. She just also does private work too. It really is a personal thing as an adult. My diagnosis has done nothing for me at all but it just confirmed what I already knew.
I am 62 and was diagnosed last year. I went to my doc first and he got me the referral. It takes a long time for it to come through. People have asked why I bothered being in my 60's. My reply was that it was necessary for my mental wellbeing. I could look back at my conflict filled life and go "ahhhh so *that's* why!
I've been married 4 times and now live alone. I've managed to arrange my life so that I needn't interact with anyone more than on a shallow level when *I* choose. I am now happy enough with my animals and technology.
I too was misdiagnosed with depression in the past and I too took antidepressants. I haven't taken them for 20 years no and don't need them. It seems like society wanted to medicate me into behaving in a way which made society comfortable. Before the depression I was diagnosed with severe PMT to explain my moods. I am still often confused by people. I speak several languages yet it's almost like other people speak a strange language that I can't understand.
For me, training dogs helped me enormously. I learned to understand body language because dogs communicate 90% body language and only 10% vocal, with humans the exact opposite. So I learned to look for clues, I learned patience and I learned I was a lovely human being because my dogs demonstrated on a daily basis that I was wonderful
Your brother would need to see his doc first though and he needs to do that for himself because it's easier to just comply, take the chemicals and do as you are told. Luckily for me, as well as being autistic with Aspergers and PDA, I'm opinionated and curious and demanded that since my body was my own, I would come off the antidepressants if I wanted to. Of course the weed won't help your brother either, it makes you mellow out. There's not much you can do I'm afraid. The initiative has to come from him and if he can't be bothered, well, that's it.
I'm not sure why your mother feels that getting an accurate diagnosis so that your brother can start building a life for himself ,would be upsetting to him. Perhaps she prefers the status quo?
Not having a girlfriend is the sort of thing that society considers abnormal or weird, which will reinforce to him that he *is* useless. My son had only a couple of girlfriends before he married (late), he too is on the autism spectrum. Having a succession of failed relationships is just what he *doesn't* need!
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