Possible ASD diagnosis for an Adult

[Deleted User]

I have two kids with diagnosed ASD. We are currently going through a bit of a stressful time being made homeless and lots of appointments with various mental health/social work branches to try and get some help (and unfortunately failing to get support more than succeeding).

I have always known I had ASD 'traits'.., I viewed it as an advantage because it meant I could understand and help my children more. But I do get stressed rather easily and don't always respond appropriately to situations. This has become worse over the last year, at times I wonder why the men in white coats haven't turned up lol. I am VERY literal, have very bad communication skills and live the life of a hermit nowadays.., not a single friend. A life choice and one I don't regret because there have been rather a lot of let downs with people but I realise this is 'not normal'., and if real friendships existed it would be helpful. Somehow I just don't do friendships and never have. I've lost every single job I ever had through my bad communication skills. I haven't worked for many years (although this was initially because my older son needed an awful lot of support due to a difficult schooling situation). He still does (he's not currently in college because of their lack of support). I've had my younger son refusing school but thank goodness, they have made big efforts to meet his needs recently and things have improved a lot for him.

Anyway, I asked if I could be assessed to see if I really had ASD. A couple of days ago I did a series of tests.., and even though my younger son was given these tests a few months ago and the assessors told me what made them say he met the ASD criteria, so I knew what 'not' to do.., I still did much the same things my son did. Some of what he did, I wasn't aware of, the details only came out in discussion with his father yesterday when I was talking about my reaction to these tests.

I knew the assessor was making 'bonding' comments, and I was supposed to reply, and say 'yeah I feel like that too blah blah' but whenever she did this, I just went blank. In fact I was getting a bit irritable with these breaks into the test routine lol, in the end I was just smiling at her like an eejit, in a sort of helpless way. And I knew what I was supposed to do, somehow I couldn't. I'm very determined, I'm used to be able to force myself to do things when I have to, however hard. Just couldn't do it in this situation.

She showed a 'happy' picture and because there were lots of people in the picture, I got really stressed and made lots of 'this is not a thing I'd chose to do, its too crowded, its dangerous' in spite of everyone in the picture smiling broadly, having a fab time. I knew what I was supposed to say.., and that just made it worse. I felt like a crazy person cause all I was doing was coming out with these depressive statements.

I'm really quite disturbed by my reaction to these tests. I know I was there to be assessed for ASD.., but it was sort of a bit of a downer because I've always known (not the detail but vaguely) that my communication skills, the way I am makes it very difficult for me to 'fit in with anything'. I accept who I am in a way, but I also found these tests and observing how I did, manifesting all the worst things I hate about myself quite difficult to cope with.

Oh dear, I hope this makes sense.

I try my hardest, 100% of the time to be the best mum I can be to my children.., but am I incapable? I isolate myself .., and well, it can't help the kids. Its not easy for them to socialise but there on a double bind with me around, if you know what I mean. I even went into a bit of a state because after all the prep work to make sure I got to the appointment on time, stress free, it turned out I was at the wrong hospital due to some confusion.., oh dear. Embarrassing. My son (older one was with me) is not good at travelling and so I do what I can to make it less stressful, but if I am honest, I'm not good at travelling too. Didn't help him to see me going into one because I didn't know how to get to the other hospital. Not good. I try to not let them see me get stressed but lately, they have.

I've had to obtain out of borough funding for this assessment because where I live doesn't have this facility for adults. So I doubt they are going to be interested in helping me 'cope' with a possible diagnosis and what it means for us. Mental Health care here is terrible, you have to get through two rounds of social workers (I have yet to see a mental health professional in spite of asking for this a few times) .., they don't tell you what appointments are for, there's no notification of what they are aiming for (and I have asked, never get a straight answer) so I don't think I'm going to get any help here either.

But I am a bit stressed, and feeling like a general reject. I know what I can and can't do, but these tests really highlighted what I am worst at. I was there for diagnosis, but it is hard dealing with having to face yourself in the worst light.

I'm not sure this will make any sense. I'm asking where do I go from here do you think? I have another assessment appointment, then they'll tell me if they think I have ASD but I will be a little surprised now if they say I haven't. I've got so much going on, I'm reaching my coping limit. So much to co-ordinate and I'm beginning to not do to well with that. Probably be homeless within a month (waiting for possession order as we speak, then its the bailiff's warrant, council won't do anything til last week, if I am lucky). Its all a bit of a nightmare and my usual 'over preparation' tactics just aren't working cause no one will help til the last minute.

skattykatty

I didn't want to read and run, even though I have nothing practical to offer. You are under an incredible degree of stress with the loss of your home looming and, on top of that, have to run around trying to meet appointments for your sons and yourself. It's phenomenal what you are trying to manage and, even though you may not feel like it, you are holding on - to the degree that you can write a coherent account of what you are dealing with.

Diagnosis can be a relief, somewhat freeing, for some people and painful and limiting for others. Perhaps you went into the tests with a sense that it would be a relief to know, but having undertaken the tests you are more aware of the box diagnosis shoehorns you into, especially as there is no guarantee that a diagnosis comes with any degree of support from health teams.

You can only be yourself. There is no right answer to these things, except for what is real for you. We all have autistic traits, though we wouldn't all be given a diagnosis, and when under immense stress these traits will feel magnified because it is a way of coping with what can be an unpredictable world, which we cannot control.

I hope someone will come along who understands these processes more. Just hope that you can be housed asap and find the headspace to manage the rest. ASD or not, this situation would tax us all. Look after yourself.

Savvy_Sue

^^ what she said ...

FBaby

Great post from skattykatty.
What you post shows is that you have one special skill, and that is your ability to auto-inspect and analyse your feelings and how they affect your life. This is a very valuable skill to have to deal with any holdbacks you might face due to ASD/ASD tendencies.

Maybe you could see about being referred to counselling? They could help you direct your self-analysis in a way that you could then consider areas of your life to focus your efforts to try to overcome any of the difficulties you are facing.

Wishing you good luck too especially with finding new accommodation. What a stress that must be.

jackyann

I am going to suggest that you try to contact the Autistic Society.
In some areas they have workers who can offer practical support whilst you sort this out.
They also have considerable experience of ASD diagnosis in adults (especially parents!)

In the meantime, use your skills to prioritise what you & your family need. skattycatty is right, you can only be yourself, don't get too hung up on "correct" responses. I hope you can use whatever you find out to help you & your family get through this difficult time.

PS: Just to say that one response won't trigger a diagnosis! It's more complex and subtle, and takes much longer than that. Quite a few "neurotypicals" would respond to that picture as you did.

carefullycautious

I think it is very difficult when you are coping alone and isolated to see that other people also have the same difficulties.


A lot of problems you mentioned I have also done like turning up at the wrong venue to see a musical and having to re catch a train to get to the other side of town.


As you have no feed back from others to reassure you it is easy to be over sensitive.


I don't think you realise just how much you are doing right in the circumstances. Coping with sons without problems are exhausting, so I cant begin to imagine what you have to do on a day to day basis if they have ASD add to that your imminent eviction and that in itself is enough to send some people over the edge


You really do need a friend and some time out for yourself. Are there any local groups you could utilise for support? Take tiny steps to link up with people and you will find we all have the same worries, problems etc


To reiterate what others have said you are extremely eloquent with what you have written and I'm sure with the right help from the right people you can once again join society and forge friendships

DandelionPatrol

deannatrois wrote: »

But I am a bit stressed, and feeling like a general reject. I know what I can and can't do, but these tests really highlighted what I am worst at. I was there for diagnosis, but it is hard dealing with having to face yourself in the worst light.

You are what you are and a diagnosis does not change that one way or the other. All it should do is point towards an appropriate regime for your life. Yes, it may be distressing to be confronted with what you are worst at, but this is just a gateway to dealing with it. So no big deal. Probably not the best timing when you have so much to contend with in your life - but it does not make you any less able to cope. As for being a reject, well I always value your calm and measured posts.

[Deleted User]

Apologies for not replying earlier, bit of a mare with a pc. Asus motherboards., never again lol. Yep and I keep thinking, need to be packing not messing with a pc cause my son can't be without a pc lolol. Such is life.

Thanks for all your replies, I shall try to stand back and see what they say on Thursday.

[Deleted User]

I'm sorry, I have to say something. When my son was having is 'psychiatric' part of his evaluation, he talked about being abused when he was 14., sexually. It was what we all hear about.., someone who was supposedly his own age (who was a lot older), who he considered a friend, he chatted to them online.

He was only allowed to have any online access on my pc, there was a game that you could only play online. The deal was he didn't chat to anyone (something happened when he was 12, chatting to immature school friends so I recognised he didn't have the skills at that age to chat online and stopped all online contact. He told me he couldn't in this game. But he was. He met up with this person in a park on the way home from school, and was abused.

I've talked with him about it, its come up now because of a brief relationship with a girl (his age) where it ended up with him feeling taken advantage of. The link is obvious. I've made it clear I'm supportive and caring, told his social worker whose going to speak to her manager about possible support/action (so long ago this woman would never be found) but because he has ASD, its quite difficult to provide him an opportunity to talk without him getting stressed. I've kept conversations brief, interspersed in other conversations.

I'm trying to stop my feelings as a mother coming through, because that won't help him. But I'm struggling right now. So much anger and horror that this happened to my darling boy on top of everything else. I wish he'd told me at the time (although I appreciate his reasons at the time of course).

And yes, I appreciate that this is kindof 'one more thing' on top of already too much to deal with so don't know how good my response or judgements are.

I'm heartbroken for him. How could this happen. How did I not know (rhetorical question, I do understand the theory). Oh dear. Its been a crazy weekend fixing his pc (can't leave him without a pc long, its his way of coping with life) but I finished in the middle of the night and now I am sitting here in a bit of a state.

belfastgirl23

I have no idea what to say except that when terrible things happen children, every parent would feel what you feel - anger and horror and guilt. I don't know if it's any help to say your feelings seem to me to be entirely normal in what are very abnormal circumstances. There are parents all over the world who are in similar circumstances to you and are also feeling they have failed to protect their children. This can and does happen all sorts of parents - single parents, couples, rich and poor, with children who do and don't have developmental conditions. It is very very sad and upsetting that this has happened your family. But you aren't alone. And I worry that you feel because you may have a particular condition you have failed to protect your child - I really don't think this is the case.

Which leads me to say that I think you really need some professional help with this. It's too much for you to handle on your own. It sounds like you're doing a great job with your son and using your knowledge of him to help him as best you can. But you also need support. Any parent would. If you're concerned about not getting the right support (or timely support) from social services then I'd say use a helpline as a start - whether a parenting support one or a support line for victims of abuse.

You shouldn't have to be alone with this. Someone has done something terrible to your family. You are having to pick up the pieces. There's no shame in asking for help. And keeping asking until you get it.

skattykatty

Agree with belfastgirl.

You are doing your best to support your child and get support for your child. You need support too. As a parent I'm sure that keeping your child safe has always been your number 1 priority. Children grow and go out into the world and you can't protect them from everything and everyone. But you can, and you ARE, there for him now. You need someone there for you as well, to support you to find a way to express your anger, your horror and your feelings of guilt. Professionals who are trained to work with children who have been abused and/or exploited have support built into their work. How much more support you need when you are a parent who is caring for and afraid for your child 24/7.

Google parentsprotect.co.uk - they have a list of agencies that could provide support and advice.