Being referred

Hi Ellioru,

 My heart goes out to you and your partner. Few realize the courage that many face in even getting to the GP in the first place to ask for an assessment. Having ones concerns apparently dismissed in such a caviller way is deeply demoralizing and not at all helpful for the person concerned. It is clear his GP has little idea of the implications or even the symptoms if he has ignored his own questionnaire outcome and I would suggest you return with your partner next time he goes, in order to support him. My boys; both on the spectrum, will not go to any appointments without support and I can sympathize with how difficult it can be to be assertive when in such a situation or confronted with such resistance.

Whist I agree on some level with Hope, that self-diagnosis can be dangerous, in my view that is usually the case when an individual is without adequate support from friends and family.

I also know of many who greatly suspect they have ASD, but choose not to go through the process of a formal diagnosis for many different reasons. Some have very supportive NT partners and feel secure in their world, others fear prejudice, but still more find comfort in simply knowing and accepting their difference and exploring ways of supporting themselves through life, based on their own understanding of their needs and not that of a formal diagnosis. In my view there is no right or wrong way, it’s just how you as an individual feel about knowing.

In researching my own childrens condition, I’ve come to realize they’ve inherited it from me. I’m nearly 50 and feel certain I have ASD, but have only recently come to realize that my difficulty; as clearly witnessed by many when I was young, is due to the condition. My brothers have it, my father had it and so do my two boys. The balance of probability is that I do too.

My journey through life has been an extremely difficult due to my social communication difficulties and frequent stress related illness. Additionally, the depression that has ensued has been very severe. Had I received a diagnosis and perhaps some understanding of my difference through the research of such a condition at a younger age, then maybe life would have been easier for me to manage. Despite no diagnosis, I’m learning so much about myself, as well as my children and I’m finding that a great comfort. Proof perhaps, that a formal diagnosis isn’t always necessary to make a difference. My depression has lifted for now, and I’m beginning to finally feel at ease with knowing who I really am and simply accepting that I will and have always had, difficulty.

Personally, I would push for an assessment if it’s what he wants. Don’t be fobbed off. I could be wrong, but given your GP’s suggestion you go private, their maybe a cost factor involved to your GP’s practice, which is marring his judgement in sending your partner for an assessment under the NHS. Issues of money, if pertinent, should not be a factor in the assessment or treatment of patients, but appear to be a real and reoccurring barrier to those hoping to find answers and improve their daily coping ability. It’s a sad fact that money has a real impact on the care we receive now.

Knowing, will give you some certainty and a base from which to learn new strategies to cope. However, coping will always be a daily battle, diagnosis or not, and is still very much in your partners hands as to how he deals with the knowledge a diagnosis brings.

I wish you luck.

Coogybear xx

@Hope would insist on a diagnosis, I wouldn't insist.

One way to tackle this would be to take a referral for depression which should get him to a specialist. Then tell the specialist that you believe that the depression (if that's what is apparent) was caused by the Asperger's. The specialist should be competent to make a differential diagnosis and get to the bottom of his issues. Don't get fobbed off with some pills for depression as this won't fix the underlying issue which may well be Asperger's.

Depression is hard to spot from the outside and it is very common among undiagnosed Aspies as they continually hit obstacles in dealing with the non-Aspie world. I was suffering from depression and stress prior to diagnosis and these have both gone (at least 99% so far anyways).

HTH

Yes, understanding is important, but self-diagnosis is dodgy. You can never diagnose yourself with Asperger's, but you can say I strongly suspect I have the condition - a diagnosis completes the circle and provides official credence. You still have the condition, or not, without a diagnosis of course, but nothing has been confirmed. If you want to be out and open about having AS, be at at work or with relations, a diagnosis will provide weight to what you say.

So I would insist on an assessment. It sounds very likely that your partner does have AS, and I wish you luck.

I've just been diagnosed at 56 so it's never too late! It is a scary thing as I now have to deal with employers on a new footing. Having a diagnosis can make things easier as the extrovert dominated world of today becomes easier to understand. It can clearly also cloud an employers judgement so it is not to be taken lightly.

It sounds as though you are perhaps reacting in a confrontational way. I've been confrontational for years and know from bitter experience that this can be counter productive. If you are relentlessly reasonable and calm and quiet with your approach then you are more likely to win through. I am trying to learn the arts of persuasion to make for an easier life!

Having a diagnosis is actually not as important as having the understanding that he has the condition. The diagnosis can help if you have no other choice. I was facing disciplinary proceedings due to the lack of understanding of my behaviour at work so I had to get the diagnosis. If he is not in this position then I would recommend that you try and learn about the condition yourselves. After all, the diagnosis won't give you any magical treatment or a new life.

I now have a better understanding of my behaviour and can see how irritating I can be to my colleagues! I also see that I do have insights that they miss so I am comfortable that on balance I make a positive contribution. I feel that my understanding of my Aspieness is helping me to fit in better. I have also told people at work that I have the condition and 99% of people react in a friendly way and a lot of them proceed to tell me about their Aspie friends or relations - it is really really common!

Can I recommend two books? Living well on the spectrum by Valeria Gaus is a book that I read before getting a diagnosis. It's full of practical advice and it has helped me to adjust to the extrovert world.

The second book is "Success as an Introvert for Dummies". This is again full of practical advice that may apply to both of you. The theme of the book is that it's absolutely fine to be an introvert and the author has sound advice about being comfortable with your position on the introversion vs extroversion scale.

People can be diagnosed with Aspergers/autism in their 40's!! If you encounter an 'old school' doctor like the one my son had aged 3, they're reluctant to label people, often to the patient's detriment.  My son's only just been diagnosed age 16 - his nursery teacher & primary school teachers raised the issue of him being on the autistic spectrum, & I always suspected it, but his epilepsy specialist wouldn't entertain the idea whatsoever & just said my son was "eccentric".  Now he's retired the new specialist confirmed he has Aspergers - so my son's missed out on essential support & is now too anxious to go anywhere without me.

Sadly the medical profession seems unashamed and unperturbed about the suffering they cause with this mis-information. There are still GPs despite Think Autism and the Autism Act who believe it is something people grow out of, and there seems to be no abayance to all the other mythologies bandied about.

The medical profession is particularly jumpy about government reforms and interventions, particularly over clinical funding. They are upset when their feelings are encroached, but not convincingly concerned when patients are disadvantaged by poor standards that are the medical professionals' own doing.

It's called "having double standards". Hypocritical rather than Hippocratic. Not acting in the best interests of their patients, but making a big fuss when their own interests are compromised.

Hope said:

You are never too old to be referred for assessment. I am 26 and was diagnosed when I was 21, so not much younger than your partner. There are people being diagnosed on the NHS in their 40s and even older. The doctor is breaking the law - the Autism Act states that age is not a criterion for assessment. You need to go back and demand an assessment, and mention the Autism Act and what it says.

A GP cannot decide whether or not your partner has Asperger's - they are not qualified to do so.

See a different Doctor if your current one continues to refuse referral.

Thank you. I'm going to go with him to his next appointment so I shall definitely bring that up.

I think we're looking at making an official complaint, he was told anyone over the age of 18 cannot be referred by a Doctor...uhm..right! The misdiagnoses of depression ain't amusing either. 

You are never too old to be referred for assessment. I am 26 and was diagnosed when I was 21, so not much younger than your partner. There are people being diagnosed on the NHS in their 40s and even older. The doctor is breaking the law - the Autism Act states that age is not a criterion for assessment. You need to go back and demand an assessment, and mention the Autism Act and what it says.

A GP cannot decide whether or not your partner has Asperger's - they are not qualified to do so.

See a different Doctor if your current one continues to refuse referral.