Guidance for Adults for Assessment & Diagnosis through the NHS

i have recently been diadnosed with aspergers at the age of 45.  and i just wanted to share my experience, as i feel that my story may help some people, as it has not been as stressful as many people experience.

i have had problems all my life, fitting in trying to conform, feeling alienated, but not knowing why.  it led to many problems, low self esteem, alcoholism, suicide attempts.  i was frustrated and scared but did not kno where to turn, or how to address my problems.

then last year i snapped.  i started having cbt with some great people, started asking questions and actually got answers.  i stopped working, as i just could not cope anymore.  after struggling through the workplace for many years, the well became dry and i could not pretend anymore.  coping and dealing with people and day to day life was too much, depression and anxiety were and are ruling my life.

then in april this year my mum suggested i get tested for aspergers, something i had never considered, i did some research and recognised myself in many stories.  so i asked my gp for a referal.  he was unsure what to do, but quickly got a referrral sorted.

i had my initial interview in june 2015, it went well, it was exhausting but the doctor i saw was brilliant, and at the end she explained that my next consultation could possibley be a year away.  she was wrong thankfully.  in october i had my next meeting,  then a month later they spoke to my parents and i had my fianl diagnses on 24 november 2015.  i was told a diagnoses of aspergers was relevant.  what a relief, to be told that i was different, my feelings were true, and i was not alone.  i was so pleased.  i am now going on a course about aspergers which starts in february, then i shall do a course in socialising and social anxiety.  i have joined NAS and i am slowly getting involved.  i am not good with people so i am not sure how far i will go with it all.

that was 7 months from asking til final diagnooses.  i hear many nightmare stories abut this prosess, it taking many years for things to happen.  and this upsets me.  i just wanted to say that for me and i guess the area in which i live the NHS and the mental health teams seem to be doing a good job.  the system needs help but i just wanted to tell people that it does work in some places, so it can and should work in others.

we should not give up hope and not give up trying.  i think the system needs help, and i have been very lucky, i hope other people out there get the help they need, ans soon. 

this is the first time i have ever posted on anythng like this so i hope it is ok.  i just want to send a positive message out there, i am not sure if i can name the health authority i use on these sites.  but mine was fantastic.  in time, hopefully soon, everyones health authority will be brilliant.

hi 

I am a 31 yr old adult who i am interested in getting tested. i already have form of learning diffculties and i am high fuctioning but due to LD i cant express express myself. i also have many ental health issues and i did the Adult Autism Spectrum Quotient and scored quiet high on i would want to do it privatly and just looking where i would go and the £££!!

Hi MissMonday,

Thanks for sharing your experience with us. It's great that you've found the NAS helpful.

Sofie Mod

I just thought I would share my experience of getting diagnosed so far. My full diagnostic assessment is next Thursday but I've been fighting for a whole year to get to this stage. Had I not complained to PALS my full diagnostic assessment would be happening in February 2017.

I first went to my GP about possible aspergers saying my sister had recently been diagnosed. She seemed highly reluctant to even listen to me and had a habit of dismissing anything other than depression and anxiety (maybe due to receiving payments for anti depressants). She seemed to view everything through a sphere of anxiety.

I went back a second time a few months later and mentioned it again. She asked me if I lined my toys up as a child. I obviously said I couldn't remember as my childhood has been mostly blacked out due to trauma. This finally prompted her to ask me to ask my mum to write some notes about why she thought I had it. She did and that eventually got me referred. She said it would take up to a year.

I was quickly sent an invitation to go for a pre assessment. This wasn't emphasised so I thought it was the real thing. I asked specifically for someone from the aspergers team to be there as they don't always provide someone who isn't from the mental health team - someone from NAS advised me to ask for this. 

I then received a letter saying my full diagnostic assessment would take up to 18 months. I was very upset so I phoned NAS and they told me to complain. I phoned up and they were very helpful at my local PALS. It took about six weeks but they have given me an appointment much more quickly. This is because I emphasised my need for a diagnosis for work and that I was bullied at work. 

I'm very nervous about my assessment but I filled in the questionnaires and I'm sure they must mean I'm autistic. 

I just want to say if you have any problems at all with the assessment procedure go back to NAS they are awesome and will always provide a solution xx

Hi, my partner has his assessment tomorrow and is very very nervous. Can anyone give me some advice re what will happen, what they'll look into and ask. I want him to know what's happening as I fear he might not go if this level of stress can't be controlled. Thanks in advance 

I was pondering on getting a diagnoisis but some of the areas I dont present with however I seems to make friends with alot of people with the condition as I relate to their experiences and think like them. I don't know If I am on the spectum or its just anxiety related.

Thanks for this. I was put off my by GP's response last year, after I'd told her about the Baron-Cohen test & c., as what she advised was that I call the local NHS Mental Health Helpline and let them take it from there, because I've had anxiety problems (which I now realise are probably Asperger's-related). Now, while I have had anxiety in the past, I was not then suffering from them and am not now; also, I don't like the idea of taking up the time of the MH Helpline, as that has more than enough on its plate with people with acute problems.

I'm in Glasgow, if that's a help re: health service provision.

My son was diagnosed in 2011, and the more he grows the more he reminds me of my childhood. Like me he was a late talker for example. Couple that with my mental health/self harm history and the fact he's not the only kid in my family with a diagnosis, and I'm wondering if I need a diagnosis.

I've done the AQ questionnaire and scored 8, so I suspect my GP would consider referring me. That said though, I don't want to waste NHS time either. To answer your question though, you need to ask for a referral to a Psychiatrist or Clinical Psychologist. The BPS have lists of them on their site.

Hi just wondering if you can give me a lil advice, my child was diagnosed with Autism and i secretly believe i have it to and that he may have gotten it from me, i see me in him and many things i struggled with as a child like he does, but always felt to ashamned to talk about it to anyone, these days there is so much more support, and i really need to get help myself in order to help my son, i avoid support groups because i dont like socialising or even going out,  the thing is i asked my gp about it and she was puzzled who to refer me to, is there an assesment team for adults with the NHS i should ask her to refer me to, what would it be called, thank you

I am pretty sure that when they first tell you that they have agreed to assess your child, they must send you a form to complete for parental input.  I was sent one from my LA.  Please check this with www.ipsea.org.uk and then if they have breached something speak to the LA again.  In the meantime do write a letter listing his problems to get it there in time for the panel.

Hello IntenseWorld, thank you for getting back to me. Thats great I just wanted to double check if this was the correct process. I havent recieved a form they have just told me to write in. Is that what I should do list the challenges we experience on a day to day basis?

If you mean the statement panel then parents don't go to that, but you would have received a form to complete beforehand in which you list all your child's difficulties.

My son's panel meeting is next week, I have asked to go however been advised by the ASD Pathway team that parents don't go to the panel meetings it will be the medical professionals meeting to discuss my son amongst themselves. I have been told that I can write a letter and it will be put forward to the panel and that the outcome of the panel will be fed back to me. Is this right? I don't know where to start with my letter as this battle has been going on for 5 years. Can anyone provide guidance please?? x

Are you saying that your "card was marked" before you even saw the consultant, because you pushed your GP for an assessment?

I would believe this, because I have personal experience of something similar myself.

This is some of the information from Dr Gould I mentioned: http://www.autism.org.uk/about-autism/autism-and-asperger-syndrome-an-introduction/gender-and-autism/women-and-girls-on-the-autism-spectrum.aspx and there are some interesting PDF's on the website worth reading too.

The fact that he thought you taking pills to alleviate stress was OK is beside the point as to whether you have Asperger's or not from his perspective.  He is missing the fact that you have some form of social anxiety.  Yes, that can exist as a diagnosis alone, but his job as a clinician is to investigate that further.

Did they take your childhood history?  Because if not, he has not followed guidelines.  Even if your parents couldn't be there, you can bring someone who knew you as a child (or an interview could be done by questionnaire or by telephone) and when it is simply impossible for whatever reason, diagnoses can still be given without childhood history.  It is highly preferable but not essential.  These are the NHS NICE Guidelines, they are backed up by statutory guidance (which is the law as it is a result of the Autism Act and the Autism Strategy) so they have to assess correctly:

http://www.nice.org.uk/nicemedia/live/13774/59741/59741.pdf

http://guidance.nice.org.uk/CG/Wave23/1/Consultation/Latest

Did the consultant use any clinical tools such as the Autism Quotient (AQ) or the Adult Asperger's Assessment (AAA) or the Autism Diagnostic Observation Schedule (ADOS)?

If it was just a "chat" about your difficulties then it was not a proper ASC assessment and you can challenge this.

You can ask for an independent out of area second opinion, this information might be useful: http://www.autism.org.uk/about-autism/all-about-diagnosis/diagnosis-information-for-adults/how-do-i-get-a-diagnosis.aspx

You can approach the head of adult services (probably under mental health) in your CCG:

http://www.nhs.uk/servicedirectories/Pages/CCGListing.aspx

Tell them you have suffered a sub-standard service from the relevant NHS department and it is in contravention of statutory guidance according to the Autism Act.  Tell them you want their assistance in getting a fair and unbiased assessment.  There was a listing on the NAS website with contact names but I can't find it.

Thank you.  I respect your objectivity and advice.  The consultation was beyond belief and I do not expect you to believe my posts on this sight.  It is really helpful to have the opportunity to "talk" things through, but little of what I say can be proven and is therefore invalid.

The consultant said that in his opinion my weekly intake of alcohol, approx 75units, was not a matter for concern, and that using my migraine tablets (co-codamol) to control stressful situations was "not a bad idea". 

This consultation was "pay back" for complaining, for daring to challenge the system.  It was so off-the-scale of unprofessional that I can see no other explanation.

I have no proof, no credibility. 

That's a nightmare!  This sounds like a psychiatrist that doesn't have any clue on the presentation in females.

There is recourse.  You can complain about anyone in the NHS no matter their status, via PALS and you still have the option to go to the Parliamentary Health Ombudsman further up the chain.

You could also contact Healthwatch.  It may be that the only way you will get a fair hearing is to save up some pennies and go private if you can, but before you even think about that you need to pursue this via the NHS.

As his colleague stated the opposite it's clear you are either a complicated case or they are unsuitably qualified in female presentation.  Read up on Dr Judith Gould and Dr Lorna Wing's stuff on this website regarding the differences in females.

Hi Intenseworld,

I have just got back from my appointment with Consultant Psychiatrist (as per my post of a couple of weeks back).

What an unmittigated disaster!  Won't bore you with too much detail.  Having spilled out my horrid life history I was knocked sideways by his response (metaphorically).  Haven't quite picked myself up and I am doubting that I will even bother.

His conclusion, I have no evidence of Aspergers. (I have a report from one of his colleagues written 2 years ago that states the complete opposite but opts out of diagnosis with the nature/nuture argument). He said that if I'd found myself a boyfriend and not listened to the Radio 4 feature on Aspergers 2 years ago I wouldn't be there wasting his time.

I guess I was prepared for fobbing off - but I told him the most intimate things about my life, things that I have never disclosed to anyone. I wish I had never gone.

On a slightly more positive note I was contacted by phone a few days back by NHS England in response to my letter of complaint.  She asked me to let her know how I got on with the psychiatrist - so I will call her tomorrow.  However if a consultant psychiatrist can block me then I fear there is no further recourse. 

Here is a link to the full set of ASC tests, complete with scoring, on the Autism Research Centre website: http://www.autismresearchcentre.com/arc_tests (not diagnostic on their own).

The NAS Helpline should have a list of organisations in your area, and may be able to give you advice on helping your son get his rights recognised. At the very least, having an advocate with you might help. The council should have  list of advocates for mental health. In Lambeth, the autism lead is  Laval Lebon, Senior Joint Strategic Commissioning Manager, Tel: 0207 926 4654, or email:llebon2@lambeth.gov.uk

The Lorna Wing Centre might also give you some support, as they provided the diagnosis. tel:020 8466 0098

Email: lornawingcentre@nas.org.uk

You could contact these people and ask them to direct you to the nearest adult service (I cannot believe Lambeth doesn't have an adult autism lead as they are legally supposed to according to the Autism Act and the Autism Strategy):

Child and Adolescent Neurodevelopmental Service (Lambeth)Mary Sheridan Centre