I’m pretty sure I may have Aspergers or HFA...how easy is it to get a formal diagnosis?

[NooNooHead]

I am pretty certain that I have a form of high functioning autism, or Aspergers. Looking at this list;

the-art-of-autism.com/females-and-aspergers-a-checklist/

I can relate to nearly every single point on it.

How do I go about asking my GP etc on getting a formal diagnosis? And how easy is it to actually get one?

Sorry got the link that doesn’t work! I thought I had put it in correctly...

It depends on which area you live in. My LA are very selective about who they'll deal with and it mostly excludes women and hfa.

Getting a referral from a GP can be tricky as well. They're virtually clueless when it comes to autism and will fob you off by minimising or trying to claim it's anxiety, depression etc. again, this is more likely to happen to females.

You have to be well prepared, take results of screening questionnaires for autism and take someone with you who knows you well and can remain calm.

Take a list of traits you think you have and a list of reasons you want a diagnosis to your GP, ask for a referral.
NHS dx for adults waiting list is usually around 18 months depending on which area you live it.
Private dx are quicker but not always accepted by all employers so if you need it for 'reasonable adjustments' make sure the person who diagnoses is also "accredited" by the NHS.

It's such a popular question on MN these days.

www.mumsnet.com/Talk/am_i_being_unreasonable/3428517--to-ask-how-you-go-about-getting-a-diagnosis-as-an-adult-with-Asperger?pg=1

I’ve considered doing this myself but was put off by the possibility of my diagnosis being used against me. Either by social services, or if I ever get divorced, etc.

My (adult) DS was diagnosed with Autism earlier this year. He is 23. They don’t use the term Aspergers anymore, more so ASD but his diagnosis is most definitely along the asbergwrs end of the spectrum.

My DS visited the GP (with his stepdad) with information about his traits and asked for a referral for initial consultation. He was lucky in that the GP was very understanding and agreed to refer. The initial consultation was 4 months later, the full assessment was 6 months after this and a formal ASD diagnosis was 2 months later so 12 months from initially going to GP to diagnosis.

You have nothing to lose by speaking to your GP, make sure you have sufficient evidence to back up your request and insist on a referral. If they are not willing then ask why not, if necessary ask for another opinion.

Clicky link

the-art-of-autism.com/females-and-aspergers-a-checklist/

Thanks for this thread, it’s very helpful. My 25-yr-old DS is def on the spectrum & we’re looking to get an assessment - I didn’t know a private diagnosis might be disregarded, but there is an assessment centre near us which also does NHS referrals.

Pretty sure I’m on the spectrum too but I’m pushing 70 now & im not sure a diagnosis would make any difference to me now!

@MilkyCuppa - how do you think SS or a divorce could use a diagnosis of autism against you?

I didn’t know a private diagnosis might be disregarded

It just depends what you want it for, some want it as adults for Further Ed (ECHP is up to age 25) and local authorities generally only accept NHS dx if they are involved in funding. You need to check.

I also doubt that the NHS would accept a private dx from a staff member wanting reasonable adjustments.

Some private centres only confirm traits with a pre-diagnostic assessment, then tell you to make an appt with someone else who is qualified to make a definite diagnosis.

As ever, if you're paying for it, do your homework beforehand and realise exactly what you are getting for your payment.

Gold standard for women is Lorna Wing Centre, women present differently to men.
www.autism.org.uk/services/diagnosis/diagnostic.aspx

I tried but apparently "it's probably social anxiety" plus sensory issues & an inability to read social situations, the list of female traits is "just someone's opinion, not diagnostic criteria" which lots of women with ASD relate to & I allegedly "don't need a strict routine" except I do, I just couldn't verbalise it in response to the questions they asked; I need a routine to function properly but I struggle to set that routine myself because if one tiny thing goes out of sync then the whole routine is ruined & I can't get back on track without someone telling me what to do next.

Not that I'm bitter/frustrated or anything... I fully intend to ask for a second opinion at some point but it's been 18m now & I'm only just starting to be able to think it through in my head, let alone verbalise anything even to DH, without my brain completely shutting down.

I'd recommend checking the diagnostic criteria & carefully writing down how you meet each one before you even begin to start the process. It's so easy to forget things or not be able to express yourself in the right way to communicate your difficulties to someone who doesn't know you in a short space of time.

You might find reading “The Electricity of Every Living Thing”, about one woman’s realisation that she has ASD, illuminating.

In my area there would be no chance of an adult dx. there isn't even a pathway for children atm. We have been waiting for 4.5 years for my eldest child's dx (she is now 16 and has had full camhs involvement for that whole time and been on the waiting list) her psychiatrist is now about to make the dx as dd1 will soon be moving to adult me and then she would have no chance.

My youngest child has just been referred, fortunately she is only 3 but she won't get a dx before school as there is a waiting list for a service which currently doesn't exist/function in our area.

I'm not trying to be pessimistic but I would be certain in your on mind why you want the dx, why having a dx will be helpful etc as it may be a long drawn out process depending on your area.

Why do you think it would be helpful to have a diagnosis? For me, Ive thought for a few years that I have Aspergers, but i dont think a formal diagnosis will help. I am who i am and cant really change, but realising i have it was a lightbulb moment. Everything fell into place and explained so much.

Thanks for your replies everyone- I think it might be helpful in some situations but possibly not in others, and as some of you point out, may be used against me.

OTOH I am sure that it would explain an awful lot of angst that I have felt about so many things in my life growing up and now. My constant analysis of my feelings, my dreadful social anxiety during adolescence, my poor eye contact and lack of confidence in class at school, a general feeling of being in the ‘out’ crowd and having so many hang ups about people at school too. I could never understand why people were so popular and I wasn’t - I just felt odd and shy. I remember being really self conscious when I went back to work after maternity leave for the first time and my colleagues had moved into an open plan office which I absolutely hated. I felt so awkward and ill at ease, and my social anxiety started to affect my work in ways that it hadn’t done so before.

I will see what my GP says and take it from there. As much as I don’t always like labels and being overly ‘defined’, I genuinely feel that it would explain so much and I would understand why I have certain traits.

Glad this thread has been useful to you!

Oh and I totally relate to a routine, and having a strong structure. I suspect that I prob have ADHD too and that this affects my ability to organise things - which is ironic, seeing as I probably need a structure to function well! I’m always sure that I work best with people who are good managers and delegate well; I am hopeless at being assertive and can’t organise myself at all!

how do you think SS or a divorce could use a diagnosis of autism against you?
As an excuse to remove my DC from my custody because I’m not capable. People have been sectioned for autism never mind anything else.

As an excuse to remove my DC from my custody because I’m not capable

If you have autism you have autism whether it's diagnosed or not. There are hundreds if not thousands of undiagnosed autistic parents in the UK today and at least thousands of diagnosed autistic people who are also parents.

If your parenting is not in question before a diagnosis, surely there's no need for it to be in question afterwards.

People have been sectioned for autism
Autism is not a mental health condition.

See this from Why would someone be sectioned?
www.rethink.org/carers-family-friends/brothers-and-sisters-siblings-network/get-info-and-advice/sibling-faqs/what-does-being-sectioned-mean

The Mental Health Act would only be considered if someone was very unwell and will never be taken lightly.
Someone needs to meet certain criteria in order to be sectioned. This criteria is that someone has to be suffering from a mental disorder of a nature or degree which warrants your detention in a hospital for assessment or treatment and that you ought to be detained in the interests of your own health, your own safety or with a view to the protection of others. (Mental disorder is a broad term that includes conditions like schizophrenia, depression, bipolar disorder or personality disorder).

I'm pretty sure that if autistic parents en masse were being sectioned just for being autistic, or having their children taken away from them just because they are autistic the media would be all over it. Certainly all the autistic bloggers and tweeters would be campaigning.

I think you need to do some more research into what having a diagnosis of autism means.

www.dailymail.co.uk/news/article-6349939/Mother-reveals-drugged-suicidal-diagnosed-autism.html

They don’t section people for having autism, do they not? This woman was diagnosed as an adult and had to flee the UK to avoid being locked up.

Anyone that thinks you can't get sectioned and/ or deprived of your liberty due to autism should read about Steven Newry and his father's fight to get him home.

www.theguardian.com/society/2011/jun/09/hillingdon-council-steven-neary-ruling

I recently got my diagnosis privately as going to the GP was a complete waste of time. I’m still processing the whole thing, but I have found it a relief in a way - it’s good that there is a ‘reason’ for my oddness and difficulties and I am far less angry with myself as a result.

I didn’t realise there could be issues with getting a private diagnosis accepted by authorities - I have no need to make any adjustments at work or claim any allowances luckily, but who knows what could happen in the future. I see that the Lorna Wing centre is well-rated, my psychologist also works there (though I was not diagnosed there), so that is good to know...

I feel the two examples of people being 'detained' in hospital are far from realistic examples of what can happen to people with ASD. I have two children with ASD and a non verbal nephew also with ASD and learning difficulties. He is 23 and at home. His mum would love, as he would to be in a residential situation in that he wants his own space in a shared sheltered housing situation. They have been waiting 4 years!
The last example is that of a young man who was badly treated by the LA but he has considerable care needs and requires 24 hr adult care so I don't think this had nothing to do with his ASD per say. The first is of a lady who seems very intelligent and held a good job in teaching. A diagnosis of ASD alone certainly wouldn't necessitate anyone needing to go into a residential unit. You don't suddenly contract ASD, you have always had it so she was clearly able to cope with life with it so I would suggest that other things were at play with this ladies mental health.

If the private assessment is carried out by a suitably qualified clinician, then they have to accept it. The local authorities get twitchy around private assessments for children because it might cost them money to provide extra provision in school, but that's not the case with adults. There is no help for adults and everyone knows it. Putting reasonable adjustments in place in a persons workplace doesn't have to be inconvenient or expensive.

Contact the national autistic society for advice regarding assessment.

I felt like you OP. I was really worried about being laughed at by the GP and not being taken seriously. I contacted a psychologist privately and she gave me an initial appointment free and did an assessment but if I proceeded with her I would have had to pay 1k or she agreed to write a report that I could take to my GP for free, which is what I did. She did tell me it could be attachment disorder due to early childhood trauma or ASD and she was leaning more towards ASD due to sensory issues.

She sent the report and I made an appointment, he agreed to refer me no questions asked. I got an appointment through which I didn't realise was the one appointment, thought it was just an initial one so didn't take any of my notes. It was with a consultant psychiatrist. He got me to do the same AQ questionnaire you do online, score was still 38. He initially thought I was ok, he said I made eye contact (I didn't, I look over shoulders, at nose or hair) and I was chatting easily
Bit when he asked me to describe someone who was sad and how can you tell I struggled and I don't always get sarcasm. He said I was emotionally immature and diagnosed me. He did diagnose aspergers last year.

he said I made eye contact

This is absolutely not in the diagnostic criteria for autism, it's a myth alongside 'has no empathy' 'is brilliant with computers' 'everyone is on the spectrum' 'it's only mild' and all the other rubbish that even some professionals spout. Some are not even aware that autism in women and girls presents differently to autism in men and boys.

From www.autism.org.uk/about/diagnosis/adults.aspx
The characteristics of autism vary from one person to another, but in order for a diagnosis to be made, a person will usually be assessed as having had persistent difficulties with social communication and social interaction and restricted and repetitive patterns of behaviours, activities or interests (this includes sensory behaviour), since early childhood, to the extent that these 'limit and impair everyday functioning

Can't help but think everyone can find something to relate to in that very extensive list?!

Hhyjmhyu It's not a question of relating to something in the online lists, it's a question of relating to a high percentage of it, and realising the descriptions seem to fit and explain things that nothing previously has done, like a lightbulb moment, that will spur someone on to seek diagnosis.