I think my 41 year old husband has Aspergers but I have absolutely no idea where we start!

Hi there,

This is my first post on here. I once did a module, back in my Uni days, on Autism and Aspergers. Fast foward a few years to meeting my (then) boyfriend and he used to do things/say things/act in certain ways and in general, present, to me, (knowing what I'd previously learnt at uni), as being somewhere on the spectrum. At first it was a bit of a running joke. He'd do something really idiosyncratic or a bit 'irrational' and I would laugh and (lovingly) mock him.... "You've got Aspergers you have". But 7 years later, after becoming my hubby, it's not quite so funny! I'm exhausted and sometimes at the end of my tether. His behaviour has brought us close to splitting us up and not wanting that to happen I've decided something needs to be done. He needs to see someone to tell us once and for all if my suspicions have always been right and then we can take it from there.

Who is the "someone" though? Our local GP? Are they going to take us seriously and listen to us? We're both abit aprehensive and hubbys a bit scared and daunted by the whole thing.... But something needs to be done. Please help x He's not keen on pill popping so what are our options?

Thanks in advance

23 Replies

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  • Hi there. Your GP is the one who can apply for for funding for your husband to receive an assessment/diagnosis and that involves your GP believing that there is a need to apply for that funding and even if he is fully supportive of your suspicions, that funding then needs to be granted. I had a fantastic GP who totally 'got it' when I entered his office at 48yrs old, stating that I now knew what was going on after all these years!! Funding was initially refused but my GP fought for it and it was finally accepted! I now have a diagnosis of Aspergers after years of depression, misdiagnosis, harmful medications etc etc! The only other option you will have if your GP does not successfully get you funding is quite costly private help! But...I am a little concerned by what you seem to think a diagnosis will give you and your husband. I needed a diagnosis because I was literally being bounced from pillar to post with mental health problems and given different meds which literally nearly killed me a couple of times and multiple other social and work issues that I was unable to explain or get the right help for prior to diagnosis. From your post I feel that you are believing that you can 'alter' your husband! There is no 'pills' that 'cure' the symptoms of Aspergers, only if there is associated mental health problems. What both YOU and your husband will have to come to terms with ultimately, with a diagnosis, is simply that there is nothing 'wrong' with your husband...simply he functions differently. That he functioning is not abnormal but is different. That is the most important thing that I got from my diagnosis! I had nothing 'wrong' or 'abnormal' about me. I just function differently and need more understanding with some things...as well as the fact that I needed to understand more how others worked differently to me!! Wishing you both all the best and hope all goes well for you both xx

  • Thanks for your reply.

    I'm not sure why my post has come across as me wanted to alter and change my Husband and find a cure. I'm under no illusion that any of those things are going to happen. My husband is very special and the way he thinks, functions and operates is fundamentally who he is. I simply want a diagnosis for myself, and for him, because it can be very frustrating for both of us. He doesn't know why he does the things he does. I don't know why he does the things he does. And a diagnosis would give us both a explanation. If it was definitive, we could research it more, look at methods to cope better than what we are and explore options to help manage it. I can't imagine that a health professional says "you have Aspergers.... Now on your way". There are clearly strategies that could be put in place for me to adapt to his ways more effectively than what is happening right now and for him to feel that he's not "mental" (which he often thinks and says he is) and that there is reasoning to his behaviour that can be explained.

    I just came on here for some non judgmental advice and support as to how the whole process works.

    Thanks

  • Me saying I was exhausted and at the end of my tether has probably been read or misunderstood as me sounding a bit selfish. I can kind of see your confusion. I think really, as a couple we should have addressed these issues years before they have become such a problem that I'm at the point of exhaustion. But me asides, and our relationship aside, a diagnosis would be nice for him.... So he knows he's not 'going mad'.

    I want to clarify. I don't think there is anything wrong with anyone with Aspergers. The only thing that is wrong is the way we are both dealing with it at the moment.... which is pretty unsuccessful.

    Thanks

  • Hi, please do not think I was being critical in any way, I am sorry if that came across that way x I understand the whole process as I said and I understand that I felt there could be some more help than there actually was from diagnosis..but it was as simple as that. I have Aspergers diagnosed now and that is as simple as it is. The only thing I have achieved now is that I take no sh@@ from anyone now as I now know I am who I am..not damaged or abnormal (as I was getting directed to me from family, professionals etc prior) and that was the only solace I received from diagnosis. I can now fight for my rights for the correct support from work, but struggle with other areas as support and help is so badly lacking..and the condition is still so greatly misunderstood. All I would say if you struggle with even getting on the first footing of getting an assessment (as funding is atrociously limited) I would suggest that you both follow your instincts as to what you suspect and research everything to help yourselves move forward. I just know that there is extremely limited help and funding for children and adults fair even worse after this. Please do not think that I was being critical or judgemental and was only assessing what I percieved from your post and what I could relate to regards my own struggles with this. Wish you both all the best and hope that you do manage to get that diagnosis, which I do know helps with giving a definitive answer at the very least. xx

  • Oh dear, well that's terrible! Are there no charities who help or support groups for us to be referred to? Or courses, apps, leaflets, medication, anything?!?! That's a very sad state of affairs. Usually where the NHS cannot offer, a national charity kind of 'picks up' the overflow... Is that not the case? It sounds like we're on our own then!

    We both sat down and looked at The Aspergers charity Website (and I did think maybe there would be some kind of helpline type operation that I could call but there wasn't) and we sat down and went through all the ''symptoms' in list form together. There were 8 keys symptoms and hubby does 7 of them.... So I think we both know!

    I just hoped for more support I suppose. I hoped somebody would help me to manage it better than what I obviously am. Maybe with a diagnosis I would just naturally accept though and make more allowances in my head. If he does have it, I've probably been way too hard on him for all these years which makes me feel terribly guilty 😯

    Thanks for your reply

  • Neither of you should ever feel guilt about anything! Autism/Aspergers was first defined over 70 years ago and it is appauling that in this day and age there are thousands who are suffering because of misdiagnosis/misunderstanding etc. You can fare better in certain postcodes! (as with most things!!) but it is so hard to get funding for assessment and diagnosis and that is it! You can go back to your GP afterwards to ask for certain things like CBT/therapy etc which is specifially aimed for those on the spectrum but that is severly limited with funding and availability! That is the very sad fact. You may have found, as I did, charities struggle to help children on spectrum and very rarely cater for adults. I did receive some limited help from my local National Autistic Society by a very burnt out volunteer who tried his best to spare a few hours! (to help me with claiming DLA. i do not want to make you feel totally despondent but just be prepared that there will be no easy or definitive route that you will be able to take with this...but do put in your full determination! That has gone a long way for me! Keep fighting for what you want...just be prepared to fight for it thats all. Go for it xx

  • Thankyou. I shall keep you all posted. I have a diagnosed condition that means I live in chronic pain and have done for the last 5 years. I have only just been referred to a CBT therapist as part of a pain clinic I now attend so with that wait at the forefront of my mind I DEFINITELY won't be holding my breath that it'll happen for hubby. Its taken me forever. And especially as he holds down a full time job and is reasonably high functioning (presumably in comparison to others). I was on a waiting list for 18 months to see her! And I'm only allowed 6 sessions. It's just the state of the NHS unfortunately. The talking therapies are so under funded. It's a sad state of affairs because they really work. But we live in a pill popping, quick fix society.

    A doctor will take one look at hubby and say he's just a bit idiosyncratic, I know they will. Because that's what everyone thinks. That he's just a 'bit of a character'. But they don't live with him and see all the other stuff! But I fear that a doctor will say as long as it's not affecting his job to just carry on. What about our home life though? What about our marriage?

    Are there any decent books on coping strategies we could buy on Amazon or somewhere ?

    Sorry to keep bombarding you with questions. Unfortunately I am feeling a bit dispondant! (Not your fault)

  • There is a major misconception, unfortunately amongst professionals also, that autism is quite easily spotted! Flapping of hands, no eye contact, no empathy etc etc. RUBBISH! A way you can define more high functioning autism is it can be more about what you CANNOT see..not just what you can..and it can be quite debilitating not only from the point that it can impact on a persons life a hell of a lot more than is noticible (not to mention those who are close to person) but the fact that the person is ignored/misinterpretted/misdiagnosed etc. can make it even more horrendous for those on the higher end of the spectrum compared to those who are more defined and noticeable! I concentrate on girls on the spectrum because I and 2 of my daughters are now diagnosed recently. Temple Grandin and Rudi Simone specialise in female spectrum so I have concentrated on these but I dont think it is easy to relate to any specific book as every person with autism is different! Remember that because I have felt confused at times when I dont feel something relates to me specifically! Tony Attwood would be a good start as he concentrates on both sexes but the main thing I have done is google, google, google. Just follow and believe in your instincts and remember that you will probably know much more about autism and living with it than most professionals you encounter! Sad fact still, unfortunately. xx

  • It is difficult living with someone with ASD.

    if Hubby agrees, take him to his Doctors first, they might refer you on.

    A friend's Son has recently been diagnosed with Asperger's and is over 25.

    There is a Thyroid - Autism Connection

    and also a low/deficient Vitamin D (bloods) Connection, (so start googling.)

    Not sure if this helps, but I read somewhere many years ago that said 'we are all on the autistic spectrum.' :)

  • Oh we definitely are! I have (mild) OCD in terms of cleanliness and it drives hubby, the messy one, bonkers! We all have our ways 😅

    Thankyou. I'd never heard of either of those connections so I'll get reading.

    Good advice, thanks x

  • Sounds like you are both perfect for each other Fletch, remember opposites attract. :)

  • Hi my son has been diagnosed recently with Asperger's he his 29 and his behaviour drives me to dispair. We went to our gp who referred him to a psychiatrist. Had 2 hour consult with her then diagnosed there and then. There are no pills to cure this but he gets some one to one counciling hope this helps.

  • That is helpful, thankyou. I'm glad to hear that he is receiving some support (and that it doesn't sound as though you've had to fight tooth and nail to get it which is good)

    Can I ask, have you changed now you have this diagnosis? Are there things that you now do differently knowing what you now know? I'm just wondering if there are things that I can do. I don't expect hubby to change.... That's just how he thinks. I see it more as 'I probably need to adapt' but I can't say I know how.

    For example, in social situations he'll say something that is totally inappropriate (he'll point at a stranger in the street, lets say, with an arm missing, and he'll ask them, whilst pointing, why they don't have an arm. It's very 'childlike') So I will then explain to him that it's not appropriate or acceptable to a) point and b) say what he's said. He'll ask why. I'll explain why. He'll say I don't get it, I just wanted to know. I'll explain again, in a different way, using a different analogy or different words. He'll say, I still don't get it. Why wouldnt he want to tell me about his arm? Or he'll justify it and say "but he didnt mind so what's the problem?" And I try again and again and again until I end up either losing my temper because I feel as though he's not listening or just being awkward, or I just say "forget it. Say what you like" for an easy life, in which case, he'll end up saying X again in the future in a different scenario and I feel irritated because I've explained to him a thousand times why he shouldn't say things like that in public in front of people and yet he's doing it again. Its like Groundhog day. And we go over the same thing all over again.... He just says "I don't get why I can't?. He hasnt got an arm (or whatever) and im just interested to know why he hasn't got an arm. That's not rude. It's taking an interest which you say is nice" And we go over the whole thing AGAIN. Its so tiring! And These arent people he knows. These are cashiers at Tescos and the girl behind the bar! So im now thinking.... Should I not ever bother trying to get him to think 'as we think'? Am I completely wasting my breath AND patience for no reason? Is it as pointless as me asking a potato to turn into a cucumber? Do I just need to be tolerant and say "ok dear" and then apologise to whoever he might have offended? Is the 'reasoning' and explaining that I keep doing a waste of time? I guess I'm wondering how you have changed? I'm wondering if the feeling of dispair goes once you've had a diagnosis and you've realised he can't help it; it's his condition. Do you stop explaining that that's not the 'socially acceptable thing to do' and just accept it?

    Any advice would be appreciated.

  • Hi

    Yes it has made a difference since diagnoses but it still frustrating cause he sees the world different to us. At least now there is a reason for his the way he is. He is a very lonely person has no friends but I do try now to get him out of the house even if it his only Tesco.

  • i think mainly it is understanding that he can't help it, and that would help you. Does he have friends?

  • It can be hard to get an official diagnosis as an adult. Many GPs and therapists are not educated about high functioning autism. It has only been recognized officially since about 1994. Also, I think there is a bias against diagnosing adults for fear we will come out of the woodwork and overwhelm the system. (I don't think that is true, and a lot of older people who struggled through life without the beneficial recognition of a diagnosis could have the chance to pass on what they know, as well as get some help. But I digress...)

    I am in the US and got a diagnosis by paying out of pocket at a non-profit clinic that specializes in autism spectrum assessment and accepts adult clients. The one I go to has some financial support for low-income people. I strongly recommend seeing a specialist for an adult diagnosis.

    Have you used self-screening tools online that are free, like Aspie Quiz? This is not a diagnosis, but I think it has validity for helping someone understand where they are on the spectrum compared to others. You can take it also and compare your results. Once he sees how he is different, why, and that he shares it in varying degrees with others, it will likely be easier for him to adjust his behavior in some ways to compensate.

    Another free, online resource for both of you, if you haven't already discovered it, is Wrong Planet, a forum for Spectrumites and their loved ones.

    The best of luck to you both.

  • Thankyou for your reply....

    I shall look into those things, great advice. We did go through a list of symptoms together and it did highlight how opposite our thoughts were as we discussed them all together, but a quiz would be even better.

    He/we have an appointment with our GP on Monday. We're not expecting much but we shall see! We'd consider taking it down a 'private' paying route if nothing comes from the appointment.

    Thanks for taking the time to reply.

  • I haven't read the replies so I apologise if any of this is repeated information or comes too late. I would definitely go to your GP but first I would find the most detailed list of sattributes that you can on the web and put it into a spreadsheet. Then next to each point write the specifics of when your husband has done or been affected by that point. So all the sensory issues he has, the social issues, the mental health issues and so on no detail is too small.

    That way when you get to the doctors you are ahead of the game and they

    can't say go away and keep a diary and come back in a couple of months.

    If your hubby isn't on board still make the list and then discuss it with him. I know from experience that if he doesn't want to entertain the idea that he has Asperger's you are not going to get anywhere with his expectations of what he sees as your faults rather than his inabilities but you will at least be able to go half way along the path toward him and will be able to deal with and accept the bits you can see and understand.

    22 things to know about your aspergers man (or something like that) by Rudy Simone was very helpful for me. It helped me realise that my ex-fiance's expectations of me were not realistic and more importantly that his behaviour wasn't malicious. I would have been good to have the book when we were still together (not that it would have changed the outcome) and then perhaps he would have seen too and it would have made everything easier. In the end it helped me through our break up - so I can't recommend it highly enough.

  • Thanks for your reply....

    It's been some time since my post and I'd love to report that we're further forward but we're not! I did exactly that when we went to the doctors and went armed with an extensive list of attributes where he struggles. The doctor gave us time, and certainly wasnt poo poo'ing what we were saying which was good and he agreed with our suspicions after reading all of the information we went in with & of course talking to us both. He said it certainly sounded like Aspergers. But the helpfulness ended there! He just said if my husband has coped for 40 years and has managed to hold down a job and have a 7 year relationship then he's already achieving at life. He said he'd attempt a referral but with his age and his 'success' he highly doubted it'd get anywhere and he was right. About 3 months later we got a "sorry, you don't need further assistance" letter. It's ridiculous really. If we didn't need "assisting" we wouldn't have asked for help at the doctors. If things were "fine" I wouldn't be on here searching for help and advice. It's hard. He's hard. We brought a load of books and did our homework which has helped. He now goes to a support group every week for people who suffer with anxiety and stress and he said it helps him look at things a bit differently. We both know now that he gets these emotions because of his aspergers. He's basically self diagnosed now. Dr's won't do it but it's blindingly obvious. Its really selfish but I wish I had a support group that I could go to like he is! He shouted at me yesterday and was SO nasty because I said I was really stressed out. But we'd had "a chat" a couple of days prior about me feeling stressed lately (ive got work stuff going on) and he'd offered me some advice.... So yesterday, he just couldn't understand why I was still saying that I was stressed. In his head, he'd advised me what to do to stop me feeling stressed a couple of days ago and so it should now be over. I should be over it. Why am I still "winging on"? * his words. Everything is black or white. No in between. He apologised this morning but I'm so exhausted that I have been quite unforgiving. I not only have primary stress with my work situation but I also have secondary stress because I don't have a husband that I can talk/vent/communicate with because when I try he has a go at me! I feel like I have to deal with things on my own because to get him involved is just like doubling the issue.

    It's so exhausting. But apparently we don't need help!

    Sorry for the rant!

  • Good morning! Good news from Wales!! My husband was diagnosed when we lived in Berkshire and that was through a doctor of Psychology who I met who was working at my work place (then a hospital for people with learning disabilities). I persuaded our GP to refer my hubby to him. As he knew me, he said, "I can't assess him as he doesn't have LD but I'll see him once." He saw him the once and then continued to see him for 6 sessions and gave him a diagnosis. We then, eventually, got help from Social Services as they were trying to set up support for Aspergers (as everyone fell between Mental Health and LD, neither of which they specifically had). He had a Support Person who gave him 1 to 1 to assist with his main problems (me and his money!). Then we moved to Cardiff and fell into a pit for a couple of years and finally found that after a full assessment with Social Services we could be referred to NAS and for several years he has had a Support Person for 2 or 3 hours every 2 weeks. Brilliant! I also managed to get someone for another young man too via NAS and he gets 3 hours support every week.

    Also we had an interview for COUPLES

  • Sorry! It jumped. Yes, COUPLES, with a Psychologist doing research on Couples affected by Autism at the Uni. She now holds regular Couples Night once a month and lots of people have attended and some continue to attend regularly. Some attend alone and some come with their partner and we try to support people in their relationship.

    So, the thing is, where do you live? You are welcome to meet up with us. My husband worked all his adult life (after two stays in a Mental Hospital and 10 ECTs after a breakdown as a young man!!). At our Couples Nights there are professional men attending who hold down top jobs but people still need discussion with their relations to help them to cope.

    So reply to me privately if you like and we can talk more. There are ways of getting help if you find the right strings to pull. I also work with people with ME and Fibro too and we're planning MISSING MILLION on Sept 27th on the Welsh Assembly steps with Cardiff ROCK CHOIR singing.

    Miriam

  • Thanks for your reply Miriam. That's really helpful.We live in Staffordshire unfortunately so no where near local enough to attend your groups, but thay sound fantastic, well done. There should definitely be more opportunities like this and it's s6ch a shame that they're not more common. If they were people mightnot require additional services as they might find just chatting things through with like minded people enough. I know we certainly would.

    We banged our head up against a brick wall with the doctor and got nowhere. They just said as he was holding down a good job and seemingly coping his needs weren't severe enough. I knew it'd be pointless asking. Since then though my husband has joined a group ran by Changes for people who have difficulties with their anger and not coping with things very well. He's not mentioned anything about potential aspergers and nor have they, but it does him good to go and chat in a group setting about the things he gets so frustrated by. Aspergers aside, talking it all over has really done him good.

    Thanks for your reply anyway x

  • That sounds really good. You could possibly start a Couples Group in your area? Our facilitator could advise you about hos to do it and suggest who could facilitate it too? All the best.