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FlorenceD

Hi, I'm new here and would like advice

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I'm a 27 year old female. I have always had problems with behaviour since around 1 year old. I was very unpredictable with my moods, I hurt myself intentionally a lot, I was very aggressive, full of energy and didn't sleep much.

 

All my teenaged and adult life, I have had periods of low mood which normally pass but this ones been going on since September last year. My 8 year old nephew (my older sisters son) has Asperger's, hypermobility and other sensory issues. My sister suggested to me one day that maybe I have AS too.

 

I have thought a lot about this and it would explain a few things for me. Here is a list of my behaviours

Adult behaviours aged 18-now

Find working a real challenge as I struggle with the social aspects and having to be around so many people all day

  • Prefer being alone
  • Only have 2 friends who I went to school with. I struggle to make new friends and maintain friendships
  • Become very anxious and stressed in social situations
  • Struggle going to new places and hate being spontaneous, I like to know where I’m going beforehand, who with and when
  • Can’t cope with busy, noisy environments and become increasingly stressed and anxious
  • I like routine, disturbances to general routine causes me to feel anxious and stressed
  • Struggled to fit in at work and find the work environment stressful most of the time especially if the routine changes suddenly
  • Sometimes I feel quite ‘lost’ at work. I know what I’m meant to be doing but find it hard at times to keep up and get on with things and focus
  • I’m very easily distracted and can find focussing on particular tasks a challenge. Once distracted I find it difficult to get back on track and re-focus myself which causes anxiety
  • Lack confidence and self-esteem
  • Work colleagues notice my ‘odd’ habits and comment on them though I’m not always sure if they’re being friendly or not
  • Colleagues noticing my ‘odd’ habits makes me really self- conscious and I have to work really hard at being like everybody else
  • Colleagues ‘joke’ about my anti-social behaviour as I never want to socialise with them outside of work or have friends whom I see regularly
  • Struggle to tell if people are being sarcastic or serious
  • People always tell me I have a very dry sense of humour. I don’t intend on being funny which is why I can get confused at times when people laugh at me
  • Social cues are confusing to me. I feel very awkward in social situations and don’t know how to act/ react appropriately
  • Struggle to express my own emotions and if something is bothering me, I just become very quiet
  • I can’t handle other people’s emotions and don’t know how I should react
  • OCD: compulsive hand-washing, fear of germs, have to feel clean and am obsessed with my clothes being clean. I feel highly anxious if I feel dirty
  • I notice sounds all the time that others don’t seem to pay attention to but I just can’t ignore
  • Find it difficult to focus and concentrate if somebody is talking to me in a noisy environment. I find it disorientating
  • Certain smells really bother me and I obsess about ‘clean’ smells such as washing powders and softeners, shampoo’s, soaps, cleaning products
  • Sensitive to labels in my clothing and usually have to cut them out. I’m funny about certain materials and their textures
  • I notice patterns in things all the time and count things in my head constantly to the point of irritating myself and becoming angry at myself
  • Don’t feel comfortable giving too much eye contact and I like my personal space, I feel uncomfortable if somebody sits or stands too close to me
  • Find it difficult to retain certain information especially if it is given to me verbally
  • People tell me I repeat myself a lot
  • Struggle with low mood a lot of the time
  • Very sensitive to sunlight and glare, I have to have transition lenses in my glasses as this helps unless it is very bright
  • Feel exhausted a lot of the time and at times can need quite a lot of sleep (between 9/12 hours)

 

Sorry it's so long! To cut a long story short, I saw my GP back in December about my depression, anxiety and OCD getting out of control as I was really struggling. I took this list with me (the full version has all my childhood and teenaged behaviours on it too) and mentioned ASD to her. She photocopied the list said it's too difficult to get an Adult Diagnosed and said it could just be a personality disorder. She referred me for Cognitive Behaviour Therapy (CBT) and that was that. Anyways, I'm still struggling and still haven't had an appointment for CBT yet. The more time goes on the more I'm struggling with everything. I've been back to the GP and they just keep saying I have to wait for the CBT appointment, it's been 5 months since I was first referred. I just don't know what to do anymore.

 

Could I have ASD? How would I go about asking to be referred to somebody who knows a bit about ASD and mental health? What does the adult diagnosis involve and is it worth going private for it? I can always post the list in it's entirety if anybody is interested as I know it may help to have the bigger picture before advice can be offered.

 

Well anyway, that's a bit about me. I'd be pleased to hear from any of you on here and look forward to getting to know you.

 

Thanks for taking the time to read this.

 

Flo

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Hi Flo,

 

I recognise a lot of the items on your list, but maybe the effect on me of some of them is a bit milder than it is on you, and there are some that wouldn't be on my list. I'm 59, and half way through a 10 month wait for a diagnosis. Anyway, I've managed to survive for several decades longer than you without the signs being recognised!

 

When I was about 25, I went to my GP because I was depressed, and was prescribed some pills and told to go home and sort myself out, so at least things have improved if you've been offered CBT! I didn't go back to the doctor until I had my mid life crisis when I was 50, and was offered CBT. Since then I've seen several counsellors, but none of them have spotted my potential Aspergers, so have probably being trying to treat the wrong problem. Aspergers was first suggested about 7 years ago by someone I met who has a friend who has it, but I dismissed it at the time. I've discovered a few things since then that have led me to think I may have it, but no one took me seriously. Then last year I was having chest pains, and my GP decided it was probably due to stress and sent me on a stress management course. The course was pretty useless, although some of the material I got with it made me realise I'd had stress and anxiety since I was very young, long before my depression started. The person running the course passed me on to the local mental health people, and I had an appointment with a mental health nurse. She suggested Aspergers within minutes of meeting me, and gathered the necessary information to pass on to the experts, who put me on the waiting list. 10 months is a long time when you need to make big decisions about your life, but can't make them without a vital piece of information you're waiting for!

 

I'm in Wales, and I think it may be quicker and easier to get a diagnosis here than in the rest of the UK. I think there are big differences in different areas anyway. I'm not sure that my GP would have referred me for a diagnosis, so maybe I was lucky that a chain of events happened that by chance led to meeting the right person.

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The symptoms you describe do seem to me to be reflective of Aspergers Syndrome although a lot of Doctors don't fully understand Autism in adults as there can be a lot of conditions that appear similar. There is also the funding element in such a diagnosis but don't let this put you off returning if you feel you need to.

You also need to consider the repercussions of receiving a diagnosis there can be both positive and negitive effects a lot of which are outside your control.

One thing that you need to consider is how your employer would view a diagnosis, even though there is protection under the law things are not always that straight forward.

I had been employed for eight years and yet when I received my own results my employers attitude changed and to make a long story short I was dismissed on the grounds of incapacity. There was legal implications so I am restricted into going into details about my job and position. Not all employers will be the same that is the thing to remember but for all the disability regulations there are many people and employers that do not treat us with the respect we deserve.

The other point to consider is that even if you are diagnosed there is additional help available but it is not that easy to access I've found this from personal experience but it can depend on the area you live.

I've tried not to be too negitive in my reply but the reality is a diagnosis helps in personal knowledge and knowing the reasons for a life time of issues. There are equally problems where other people are concerned and it will make a difference to how your treated by some of them but not all I'm just saying Autism brings mixed reactions.

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Welcome, Florence!

Although I'd go along with Livelife's reply, having a diagnosis can prove very useful for you at any time in the future. It also confirms what we suspect, and gives peace of mind. It's up to whether you let your employer know.

That list is so very like my own, and I've been diagnosed without much trouble - a very late diagnosis for I only realised I was on the spectrum after my parents died.

 

She photocopied the list said it's too difficult to get an Adult Diagnosed and said it could just be a personality disorder. She referred me for Cognitive Behaviour Therapy (CBT) and that was that.

This is disgraceful! Too difficult? Nonsense! More and more adults are being diagnosed. She clearly knows very little about ASC's. From my experience, it seems that GPs are almost routinely trying to screen out adult diagnoses, and even those of older children. I was told that there was no funding in the area, until I reminded them that it was my right to have a diagnosis. Suddenly, everything changed and I got one. The whole process took about 3 months. CBT can help to a degree with the anxiety and OCD issues, but it can't change our genetic make-up. Your anxiety and depression is being caused by the underlying condition. It's so common, especially when women seek ASC diagnosis, to be fobbed off or misdiagnosed by GPs.

Anyways, I'm still struggling and still haven't had an appointment for CBT yet. The more time goes on the more I'm struggling with everything. I've been back to the GP and they just keep saying I have to wait for the CBT appointment, it's been 5 months since I was first referred. I just don't know what to do anymore.

This is so wrong! I know exactly what it's like having to wait. My support is only just beginning, and all the waiting has caused my mental health to deteriorate - panic attacks can happen several times a day, OCD has taken me over, etc. I'm on the waiting list for CBT, and they told me it would take six weeks. But for you CBT isn't the answer. It's only dealing with a couple of symptoms; it's not addressing the cause. Diagnosis is what you need, which will then entitle you to any support you'll need - throughout your life.

 

Could I have ASD? How would I go about asking to be referred to somebody who knows a bit about ASD and mental health?

 

Reading your list of traits, I'd say pretty likely. You must insist on a referral to an autism specialist. Nothing less will do.

What does the adult diagnosis involve and is it worth going private for it?

It's quite straightforward, and may involve a couple of 1-hour appointments - a diagnostic interview, information about your childhood (ideally from parents) followed by a simple test. I took the ADOS test which is designed to identify classic ('male-type') Asperger's syndrome. I don't have enough traits for a Asperger's diagnosis (I always knew that anyway), so I was simply diagnosed as being on the autistic spectrum. I have nearly all the 'female-type' AS traits - as do you, it would seem. It's your right to have a diagnosis on the NHS, and in a reasonable time.

I can always post the list in it's entirety if anybody is interested as I know it may help to have the bigger picture before advice can be offered.

Yes, I'd be very interested. It might enable me to help you more.

Edited by Mihaela

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I would also say that a lot of what happens is relevant to the level of support you receive while going through this process of a diagnosis. I have the support of my partner who has been with me every step of the process and accompanied me to my appointments that I would have struggled with otherwise. Some people will deal with this better than others if they have a good support network. Again apologize if my reply sounded negitive and my intent was not to try to dissuade anybody from seeling a diagnosis and support because of a possible situation that may not be relevant to an individual.

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Thank you so much for your replies. I really appreciate your different perspectives on things.

I have a lot to consider and I know its not simple. For me, I think the main reason I would want to pursue diagnosis is because I've always felt different my whole life. I've never felt as though I fit in anywhere even within my own family. I have no sense of identity and it's something I'm struggling with more and more.

 

For those of you that are interested here is the beginning part of the list that I made of my behaviours.

 

Childhood behaviours aged 1-12 years

  • mood swings
  • very aggressive often with the slightest trigger
  • low mood/ depressed
  • attention seeking behaviours by being naughty
  • didn’t sleep well, waking several times a night
  • self- harm behaviours: banged head on walls, pinching, punching, slapping, biting, scratching until bleeding, kicking heels against the wall repeatedly until my heels bled from carpet burn
  • often felt I wanted to die and used to say to Mum I was going to run in front of a bus/ traffic, jump out of windows
  • ran away for a few hours at a time to nearby woods
  • aged 7 attempted to stab older sister with a kitchen knife with the intentions of hurting her, Mum stopped me
  • Mum describes me as a true Jekyll and Hyde, child psychologist said it was ‘middle child syndrome’ and attention seeking. No report that my parents are aware of
  • Had a lot of energy and was a real ‘tom boy’, and was very loud and hectic at times

 

Teenage behaviours aged 12-18 years

  • Bullied at school, became very introverted, quiet, shy
  • Mood swings
  • Depressed most of the time
  • Self- harmed by cutting, scratching
  • Very angry
  • Aggressive: kicked and punched holes in walls at home, trashed my room, beat up my sister when she was pregnant, I knew it was wrong but couldn’t control myself
  • Had no friends at school except 2
  • Suicidal
  • Made plans to run away
  • Very anxious most of the time
  • Verbally aggressive
  • Found the social aspects of school very difficult to deal with, didn’t like being around a lot of people and found the noise and busy environment challenging and confusing
  • Left school at 16 and became a recluse: I didn’t leave the house for around 4 months, didn’t go to college as I was convinced it would be hell like school was for me.
  • Aged 17 began secretly abusing alcohol at home when everybody else was at school/ work
  • Had compulsive feelings to just get out of the house, I would only do this if I had been drinking and I would walk out in front of traffic and wouldn’t care
  • Had compulsions to go outside whenever it rained

 

Thanks again for your responses.

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Your symptoms sound very familiar to me. A lot of anger and I've done some of the symptoms you describe. Personality disorders are often confused with autism. Is there a NAS support group in your area who could provide advocacy support for you?

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The problem I have found with support groups is actually getting access to them because of there location. It will be ok for a younger pe son with parents who drive to be taken there but for older people with issues with public transport and no relatives able or willing to take you these services while valuable are not available for everybody.

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I think the main reason I would want to pursue diagnosis is because I've always felt different my whole life. I've never felt as though I fit in anywhere even within my own family. I have no sense of identity and it's something I'm struggling with more and more.

I feel a diagnosis has three main purposes. First, it confirms that what we may have long suspected is actually correct, which gives us peace of mind and puts us at ease with ourselves. There is a reason for our difference - we're not bad, mad or sad, and have a lot going for us and need to make the most of what we have. Secondly, it gives us a reason to be treated with understanding, respect and tolerance by the NT world - relatives, carers, teachers, employers, official bodies, etc. (Whether they do so is a different matter, but they have a legal duty to do so). Lastly, it enables us to obtain the support that we need. Depending on those needs we may find that we can manage without support, but one day in the future we may need it and will be very glad of that diagnosis. Although getting support can still be a battle, it's a battle worth fighting, and we have the law on our side.

 

Now to your childhood behaviours. Most of them never applied to me, but I've known autistic children and adolescents with very similar traits - the varied ways that we use to come to terms with a confusing and chaotic NT world. They are coping strategies, but not good ones. I was 'lucky', for mine were far less noticeable by others - quietly withdrawing into my own world, many obsessions and hobbies, etc., but whether good or bad, they all serve the same purpose. The attention-seeking ones (including self-harming) are really desperate calls for help and understanding. I've had suicidal thoughts myself, many times from childhood onwards - due to the stresses caused by having to interact with the NT world. My threats of suicide were calls for help. Like you, I'd also run away into woods - and still do.

What was seen as your 'Jekyll-and-Hyde' behaviour, is often misdiagnosed as psychotic or even psychopathic among autistic children - and as for 'middle-child syndrome' that's more nonsense! It was simply your way of coping and screaming to be understood.

Gender fluidity, dysphoria and confusion is common among people on the spectrum, and for girls being a tomboy is typical. Sometimes girls will adopt extreme negative traits (more commonly associated with boys) - such as aggression, noisiness, violence, just to make a point that they don't want to be seen as typical girls. They know they're different, but they don't know what that difference is - undiagnosed autism.

Bullied at school, became very introverted, quiet, shy.

I was already introverted, quiet and shy, but like you the bullying began when I got older - from 11 onwards.

Depressed most of the time

No wonder! And so was I - because nobody could understand me, and I couldn't understand why people we so cruel and mean to me.

Instead of self-harming I retreated into my own world of books, animals, etc. I was very angry too, but I bottled it up inside, which I think deepened my depression and withdrawal. My only 'friends' at school were a few 'misfits' vaguely similar to myself. I never saw them out of school. Between age 9 and 15 I had nobody I could call a friend (at 15 my 10yo cousin became my friend, but she lived 250 miles away). I was always making plans to run away, and still do. I was always very anxious and still am.

Found the social aspects of school very difficult to deal with, didn’t like being around a lot of people and found the noise and busy environment challenging and confusing

Me too - the worst days of my life (and I've had some pretty bad ones since).

Left school at 16 and became a recluse: I didn’t leave the house for around 4 months, didn’t go to college as I was convinced it would be hell like school was for me.

I left at 17, gave up A-levels, due to stress of school life. Same here about college, and for the same reason. I've been a virtual recluse several times in my life - very comforting. I leave the house only for shopping (which I hate) or escaping into wild places.

Had compulsive feelings to just get out of the house.

I can understand those compulsive feelings, but I get them without the drink. I still have them and feel ever drawn to wild places. My ideal life has always been to live in the middle of a wood miles away from people. My entire life has been a compromise.

Had compulsions to go outside whenever it rained

I have various weather sensitivities, and it's foggy and dull drizzly weather that draws me out most - when there are fewer people and cars about. :)

Edited by Mihaela

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