I feel so helpless

PerfectlyFlawed, you're not alone.

My son who's 15 this month, has mild autism and other problems too, and he's had a bit of dental anxiety but is getting over it slowly. Key thing was finding the right dentist for him - someone sympathetic, who'd take things slowly and at his pace. We made sure the dentist knew my son had autism so they allowed an extra time slot as it was NHS, gave him more time - so use your disability to get you the help you need. Hate to say this but shout it from the rooftops, as people treat you differently and the help will kick in better for you than for many people. As my son found.

My first instinct is - just let your mum or dad or whoever in your family you feel you can go to - read your post here. Then look round this site with them esp the bits on finding the right dentist for you. Maybe you can just see someone and get a referral to a community dentists if you can't go private? Others here know more than me and hopefully will know about that to advise you better.

If your mum/dad can read this - they will understand what you're going through and won't think it's less of a deal than it is. Asperger's in itself needn't be a one way ticket to reclusiveness - I bet you know that already. Many of us here (self included) have slowly cut ourselves off from other people because of the self consciousness arising from the dental thing, and you may find if you can deal with this - you can make some steps forward with the rest. Maybe find a college course in something you love, whatever? One thing at a time, eh! This is just the beginning of great things. You can find a dentist who will discuss with you options like sedation, a general anaesthetic if more appropriate and ways you can stay feeling in control, and go at a pace that's good for you. Chances are they can do all or most of it in one go, then you have a clean slate and can tackle your phobia with easy stuff like cleanings, etc?

It's not as hard as you think, that whole thought of someone being in your face freaks me out and it did my son - but you can close your eyes, take an MP3, whatever you need to get things sorted.

I'd start by simply showing this to someone you trust and asking them to read the info about how to find a sympathetic dentist. Then take it from there. Don't tackle this alone when you can have someone in your corner.

Oh and

Quote Poodleoo:
Maybe you can just see someone and get a referral to a community dentists if you can't go private?

Sorry if we moderators sound a bit down on the UK NHS at times but the Community Dental Service is an exception to this and I think they could well be your best bet PerfectlyFlawed - they will definitely understand your situation and have all the methods available which you may feel you need to receive treatment such as i/v sedation or even GA. Gordon one of the dentists who answers questions in the Dentistry Section is involved with the CDS and hospital dental services in Scotland.
You should be able to go to your GP to get a referral for the CDS in your area. I think all areas have special needs dentistry in their remit which you would fall under with an AS diagnosis - not all cover phobics without other special needs but many do.

If you prefer to go private, it is a case of finding the right dentist for you who is also equipped to deal with you appropriately - there are some dentists now in private practice who have CDS experience or dentists who enjoy helping phobic patients or those with 'special needs' - websites often indicate this but if you want to send a 'pm' with your location, we can maybe do some searching for you but to be honest I think you should approach the CDS first or if your parents already have a family dentist they like and trust (NHS or private)....they may be a good choice for you as well.

It's wonderful that you have decided to tackle this problem - sorting it out is bound to improve your quality of life and as Poodleoo says..one step at a time is the way to do it.

I also agree with Poodleoo that your family would probably be delighted to help you through this although you know them best..showing whoever you trust the most your post sounds like a great shortcut to a potentially difficult conversation because you have expressed yourself so very articulately and clearly. You said your Mum never mentioned the tartar problem again because you told her not to.
Best wishes and don't be afraid to keep posting back and asking questions here...we'd all love to try to help you through this 'problem'.

Hi there ,

congratulations for managing to write about your situation here - that must have taken you real courage! You sound very articulate despite having skipped school, and as Poodleoo said, a college course in something you enjoy doing may open up new opportunities for you.

You didn't say if you're receiving any support at the moment - for example, do you have a mental health team to support you? If not, there is help out there. I can send you a private message with some more details if you like.

As Brit and poodleoo mentioned, the Community Dental Service in most areas provides special services for people who are unable to see a dentist in the normal way. If you are receiving support from a mental health team, then you could ask your key worker about this.

You've shown lots of courage by posting here and I hope you will be able to start tackling your current difficulties and make them a thing of the past!

No I don't have a mental health team. I don't really pay much attention to the Aspergers, maybe it's just wishful thinking, but I'm not completely sure I even have it. Sure I'm not social, but I mean it's not like I'm retarded. I never bring up AS, so I'm slightly confused why I decided to mention it here, but nevermind.

Though it sounds like a good idea, I actually think showing someone this site and this post would be far more awkward and uncomfortable for me than just outright saying it.

I really can't think of anyway I can do this, I've conditioned myself through the years to just avoid anything that scares me. It's like a vicious circle, I can't leave the house because I have bad teeth (although that's not the ONLY reason, it's definately a factor) and I can't go to the dentist, because I don't go out.

Realistically I can't see myself tackling this problem anytime soon. I guess it's a good thing that I came here, atleast I'm confronting it, in a small way. But my teeth are only going to get worse the longer I leave it. It just feels so unfair.

Perfectly Flawed said:

It's like a vicious circle, I can't leave the house because I have bad teeth (although that's not the ONLY reason, it's definately a factor) and I can't go to the dentist, because I don't go out.
It just feels so unfair.

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It has definitely been known for CDS dentists to do Home Visits especially to housebound elderly people for example. There is plenty of assistance out there for you to help overcome this but you have to summon the help or let a relative/carer do it on your behalf.
You said you hadn't left your house for years..if that really is the case, then you must be long overdue for assistance from a doctor to see how you can be supported in the round...not just with your dental health problem.
Are your parents your main carers? If so, you need to enlist at least one of their help to move forward...I bet they will be totally relieved that you want to change the situation and do something to make life for yourself and probably those around you better as well.

I understand what you mean about AS just being a label someone maybe tagged onto you, years ago but you can use that to your advantage as it will make access to CDS and other services an automatic right almost...you just have to ask really.

And you've already made the first step by coming here.

Three of my sons have severe dyspraxia - one autism as well as dyspraxia- and I know what you mean about a label you're sometimes not sure about but as brit says, just use it to your advantage in this situation. Even if you have no firm, writ in stone diagnosis, you can use the fact you think it's Asperger's, to access the help you need.

When you say;

Sure I'm not social, but I mean it's not like I'm retarded.

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I'd just like to clarify that people with Asperger's or many old mild autistic spectrum disorders are not intellectually compromised in any way - having no learning disability but being deeply asocial, is a pretty bog standard description of a person with Asperger's. You can get info from the National Autistic Society or similar and if you have no firm diagnosis, it might be something to pursue via your GP.

If you're uncomfortable with showing anyone your post here (I was just thinking of my lad who would find that easier, probably! But we're all different) then you can tackle this by simply finding the right time, and telling mum or dad. In your own time when you're ready, of course.

Even getting the ball rolling is a massive thing - the hardest thing as that's when things start to happen and we all think 'Whoa! Not sure I can handle this!' so I know even broaching the subject with a loved one feels scary, because at that point you feel you're setting things in motion, but the truth is, it's a process over which you can and will stay in control and they will have a waiting list anyway no doubt, so if you set the whole thing off it's going to be a while, anyway - long enough for you to psyche yourself up and get armed with info that will reassure you. From what the others are saying, community dentists' is the way to go.

Life is really short, too short to stay holed up and not having fun. I already had probs with my teeth at your age, too, and now I look back and think of all the things I didn't do because of self consciousness, and how it really held me back and eventually, I had those problems fixed under General Anaesthetic which I'd built up into this big terrifying thing but it was easy - painless - not even embarrassing, and such a little price to pay (what felt to me like a second's sleep, wake up and problems solved!) but I didn't get round to it til I was 28. And I looked back on being your age and in my 20s, with a life blighted by my horrible (so I thought) teeth and couldn't believe I'd done that to myself with the solution ended up being painless and easy! And if you have even a tentative diagnosis of AS, chances are they will offer you a General Anaesthetic - you can certainly ask for one. As it's only available to people with special needs, these days!

Hope that reassures and helps.

I've gotta admit you didn't strike me as having Asperger's, but who am I to argue without knowing the full background . The reason I mentioned support from a mental health team was more because of your current difficulties with going out on your own. If your teeth are a large part of that difficulty, it would make sense to get that sorted out first, though.

Are you able to talk to people you don't know on the phone? I'm asking because if so, you could start collecting some information about what help might be available for you - without having to leave the house.

I only ever use the phone to speak to my nan, really I am so dependant on my parents, I feel like a toddler. I had more freedom and independance when I was 10.

I can't deal with this. I know that this is the first thing I should get sorted out, but it's just too much for me to take on. I wish I never let it get to this stage.

Well, thankfully it's the 21st century - who needs the phone when you can use e-mail ? You write really well and could use this skill to get support. In the normal way, your GP should be the gatekeeper who puts you in touch with relevant services who can provide you with support, but it sounds as if this system has failed you

If you are reluctant at this stage to involve your parents, you could write an email outlining your situation and asking for advice on what to do, and send it to places such as:

* your local MIND office (https://www.mind.org.uk/information-support/local-minds/ )
* your local Citizen's Advice Bureau (https://www.citizensadvice.org.uk/)
* and, err, I've run out of ideas, lol - will have a think about it later!

Things like going out, meeting new people, or talking to people on the phone are all skills which can be learned. I'm sure that with the right support, you'll have no problem catching up on them!

One of the main worrys I have is that scrapy thing. There are one or two of my teeth which are so weak I would expect the force would knock them out. =/

Really if and when I go to the dentist I would want to be totally passed out, in the idle world. I don't know, I think the gums around my bottom front teeth are eroding, I can feel the edges of some of the teeth with my tongue. I'm not sure whether to just wait until eventually they start falling out, and then HAVING to face up to it, cause it would be pretty hard to hide missing teeth, even though I've become pretty expert at hiding my teeth over the years. Even though I don't have much knowledge about teeth, I don't even know for certain what are the things affecting mine, I'm relatively sure I'm gonna be losing some of them one way or another....

Perfectly Flawed said:

One of the main worrys I have is that scrapy thing. There are one or two of my teeth which are so weak I would expect the force would knock them out. =/

Really if and when I go to the dentist I would want to be totally passed out, in the idle world. I don't know, I think the gums around my bottom front teeth are eroding, I can feel the edges of some of the teeth with my tongue. I'm not sure whether to just wait until eventually they start falling out, and then HAVING to face up to it, cause it would be pretty hard to hide missing teeth, even though I've become pretty expert at hiding my teeth over the years. Even though I don't have much knowledge about teeth, I don't even know for certain what are the things affecting mine, I'm relatively sure I'm gonna be losing some of them one way or another....

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The scrapy thing does not have to be used....several posters on here have had bad experiences with it in the past and their new dentists have agreed not to use it or to only do it really gently which is how it should be used....it is called an explorer.
There are newer techniques which can be used as you will see if you do a google on 'diagnodent' which is totally painless (so should the explorer be too) ...it uses translucency from shining a light at the tooth to work out if there is likely to be decay..it is really cool my kids love watching for the number on the display!

You could arrange to see a CDS dentist just for a chat and if you felt up to it only then would they take a quick look (without the explorer) .....if you felt you needed to be totally out of it for any actual treatment including a thorough clean which is probably the main thing you need...they are in a position to arrange that as well and all free of charge to you.
If you really haven't left the house for x years could you email your GP asking for a referral to the CDS so you can sort out your problems one by one.
I'm sure they would do a home visit if necessary so you could just chat through how they could help you get/accept treatment if you explained the extent of your difficulties.

As Poodleoo said there is probably a waiting list so best set the wheels in motion and then sit back and research at your leisure. You can always postpone if you don't then feel up t oit.
I promise you, you have nothing to lose and everything to gain. It is not wise to wait until your teeth fall out. A good professional clean now (with sedation) could well mean you get to salvage them all. You said you had bad tartar at age 10 so the chances are this has worsened and it may be a case of cleaning your teeth up and then finding there is very little decay underneath...this happened to posters before who feared the worst. More teeth are however lost through the gums (support structure failing) than through decay so getting that help as soon as lpossible gives you the best chance of keeping your teeth for life.
You can search on the NHS in your area on the internet and probably find details of your local CDS,you may even be able to contact them by email yourself.
You write so well though, there is a danger the person responding won't realise the extent of your social phobias so bear this in mind.

There is a solution for you....you do just have to access it. Your parents have paid their taxes over the years which helps ensure there are special services available for when people need a little more than a 'run of the mill' NHS dentist can provide. The history you have outlined to us, speaks for itself...no-one is going to question your entitlement here so please just go and claim it.
Out of interest when did you last have any contact with your family GP? They could help get you assistance and support in lots of different areas. Don't forget, 'You can take a horse to water but you can't make it drink...'

I don't remember ever going to a family GP.

EDIT: Also how long do you think it'd take for the support structure to fail? Sometimes I look at my teeth and think, hey they're not so bad, but other times I look at them and just think, oh God how could I have let this happen. It's weird, the right side of my mouth is okay, the left side seems to be far worse, I wonder why that is. I mean, I admit I do have a sweet tooth, but for the past 6 years I've cleaned my teeth on average 3 times a day. Maybe I'm not doing it right, there's a lot I don't know about teeth, and I'm not that keen on finding out. =/

Hi, I've sent you a PM .

I think you'll see a massive improvement once the tartar has been removed (they have ultrasonic instruments these days which remove it with ultrasound, rather than using the pokey instruments). It usually takes a long long time before the support structure is destroyed to such an extent that teeth need to be removed because the bone which supports them has been destroyed.

Why do you think my teeth feel fo fragile then, if fragile is the right word for it? It's not like they're wobbly, I don't think, but if I apply any amount of pressure I can feel it, it's like some of my teeth are rock solid in place, so when I compare them I know it's not good.

Your teeth have a sort of shock absorber called the periodontal ligament, which allows a small amount of movement of the tooth. Maybe this is what you're feeling?

I don't know, some of them just feel weak. I'm not sure how to describe it. I know I have to go to the dentist at some point. But it's not just the tartar, if it is tartar, some of my first teeth never fell out, I don't remember losing many molars. That's another thin that makes me worry. Also I'm starting to notice some of my 'good teeth' are getting tartar build up. Uggggghhh. It's just such a daunting thing, the dentist, and for me, ontop of it I have the whole, not leaving the house for years, social awkwardness. I don't know how I'm going to be able to do it.

Hi there.

I just read your post and I wondered whether I'm right in thinking that part of your fear about addressing this issue with your parents/family is rooted in how they will react once you tell them. You describe the look of shock on your mother's face when she saw your teeth and that you told her never to mention it again and not to tell anyone about it. I can completely identify with this - the worry of how other people would react once I told them, or worse - showed them my teeth - kept me from talking to anyone about it for years.

Do you think you could rehearse what you might say beforehand - I did for a number of weeks before I actually said anything to anyone. It may be that you could talk to them in more general terms to begin with - start off by explaining to them in as casual a manner as you can muster, that their reactions to things cause you to get more stressed out about some problems than you otherwise would. You could then use the dentist thing as an example of this - or choose something else until you feel ready to mention this - maybe the Dr's, or going out. Give them an example of the kind of response you need to see and hear in order not to get stressed by their reactions. It may be that you need more of an 'oh, that's no problem, we can look at sorting that out together', response, and then revisiting the issue maybe a couple of days later.

Often the stress other people display feeds in to us and just exacerbates the stress we already feel - if our parents act like they're scared and worried, then we assume there really must be something to be scared and worried about. What they're really displaying is how much they love and care about you and want the best for you, but sometimes we don't experience their reactions in that way - it just adds to our stress. If they can stay calm and show by their reactions that this situation can be dealt with, and that there is nothing to be scared of, then this feeling will feed through to you, and hopefully you will start to see it the same way.

I hope some of the above is of use to you, and that you're able to take the first step sometime soon, but try not to put too much pressure on yourself.

CT

Perfectly Flawed. I just wanted to say Hi! Don't rush yourself, i think you should be very proud of yourself for having come to this forum. I know that it was a big step for myself as well. Most likely a big step for a lot of people here. We can accomplish more than we are aware of. Even if its just little steps. Its nice to talk & relate to people that actually know what your feeling/going through. Have some faith & confidence in your abilities. I find that when i really try to put a more positive spin on things, they aren't quite as scary. Maybe, if we try to take a small step everyday, we'll get there. The best part is...we can talk to each other. This forum is great. I only wish that i had found it sooner.

Wow, cannot believe it has been almost a year since I posted this.

Well, suffice to say nothing has changed, my teeth are still in terrible condition, my life still nonexistant. At the begining of the year I told myself I was going to confront the issue of my teeth within the year, but so far I haven't done anything, and it doesn't look likely that I will, right now. My mentality is still the same, the thought of talking to my family about it and going to the dentist just makes me feel like shit, dread, fear, self-loathing, all the works.

I don't know why I came back here really, I know nothing anybody here can say will make me change, just feel like venting. I don't like coming on this forum most of the time, it just makes me depressed.

EDIT.

I'd also like to add that this year has seen my family's finacial situation get considerably worse, my mum and dad are just scraping by right now, so this probably wouldn't be the best time to bring the situation about my teeth up. I've looked up how much some dental procedures cost, and they are sickeningly expensive, the kind of money I will never have. =[