Getting an Official Aspergers Diagnosis
In this post we will discuss the issues and techniques surrounding diagnosis of Asperger’s Syndrome. The issue has become a bit of a minefield with many general practitioners refusing to allow people the opportunity for an official diagnosis.
Many people have already taken the free online AQ Test, which will give people the opportunity to get an initial insight into the degree of their autistic traits without the hassle or expense of going for a medical consultation. While it gives a good general indication where one is on the autism spectrum, it is not a substitute for an official diagnosis.
We have written this post to try and represent diagnosis perspectives from a UK and US angle however we are aware that the advice we give may differ between countries (and states) so you will need to do your own research in your place of living to determine the best course of action.
Why get an official diagnosis
There are many benefits to getting an official diagnosis, which many people don’t realize.
With adults, an official diagnosis is essential if you intend to claim benefits. Supplemental social security income or disability insurance both require an official diagnosis. Here are some tips for people in the UK on how to go about claiming disability allowance
As well as benefits, adults with Autism are also entitled to disability rights. This enable them the right to disclose and request accommodations at their place of work.
For toddlers and children, the earlier they are diagnosed the sooner services can be provided. Occupational Therapy and Applied Behavioral Analysis are just some of the many useful resources out there for kids that can help them.
How to get officially diagnosed with Aspergers
It wasn’t until 1994 that Asperger’s could officially be diagnosed. Usually the best starting point in the process of diagnosis will be your GP (Doctor). Depending on your country of residence, they will then refer you to one of the following:
- Neuropsychologist (PhD)
- Psychiatrist (MD)
- Social worker with AS experience and a MSW degree
- Psychologist with AS experience and a Masters degree
- Scientific Study being done at a university
If your GP is not willing to refer you directly you may also want to consider going direct to the specialist.
In The US
For help in your state click this link http://grasp.org/page/statebystate-help.
Or try http://www.healthgrades.com/neuropsychology-directory
Also, you can call your insurance provider under behavioral health needs.
In the UK
You can check out this link to find a Neuropsychologist or psychiatrist in your area – http://www.bps.org.uk/psychology-public/find-psychologist/find-psychologist
Getting a free diagnosis
We have observed from feedback from people who taken the AQ Test that GP’s are not always willing to provide a free diagnosis. We wanted to offer a few alternatives that you may find helpful.
There are many scientific studies being done at various colleges or medical centers about Asperger’s. Many of the studies will even pay you for your time and you get free MRI and PET scans. You have the right to request the findings once the study is done. There is a list at the Global and Regional Asperger Syndrome Partnership (GRASP) site www.GRASP.org, which is in the US. Click the “Help &Resources” tab and then scroll down to the Diagnostics sources link. There are a few going on in the state of New York.
If you have already taken the AQ test on our website, you may want to check out a number of similar free online tests:
Broad Autism Phenotype Test – This test will measure the mild autistic traits that are present in the person taking the test
Aspie Quiz – This is a slight variation of the AQ Test which will compare the Autistic traits against Neuro Typical ( non autistic) traits.
Mind in the Eyes Test – People with ASD often do not interpret facial expressions easily, this test is designed to evaluate your capacity to read facial expressions.
Before the appointment with your GP
Unfortunately, many doctors are still not knowledgeable or up-to-date with Asperger’s Syndrome. So do the homework for them. When you go to speak to your doctor, bring a list of your concerns with you. This will help the doctor and save everyone time. You can also print out a list of Asperger’s characteristics in order for the doctor to compare your traits to the characteristics list. This way if your GP is not well-informed, you can be helping educate him, which may help him refer other patients in the future.
(If the child is a resident of the USA and is under the age of three then call or email www.birth23.org. Evaluations done before the child’s third birthday are FREE. Do not delay! Trust your gut instinct and get services for your child as soon as possible. It really does help.)
For the diagnosis of children you may also want to refer to Leslie Burby’s book Early Signs of Autism – Diagnosis and Treatment Options
The testing process
Most processes use the DSM IV criteria for diagnosing Autism and Aspergers Syndrome
Children are usually tested using the M-CHAT (Modified Checklist for Autism in Toddlers). It consists of interviewing parents and evaluating the child. Parents should be prepared for paperwork and checklists. They will ask when your child achieved milestones (ie. How old was your child when they started walking?)
For adults, questions of your childhood behaviors and your current behavior will be taken into account. You will be asked questions and might need to consult your parents or siblings about your childhood.
Dealing with the diagnosis
Everybody is different when it comes to responding to the diagnosis that they have Aspergers or Autism.
For some, it is a relief because it helps you understand why you are the way you are. You have a reference point and you can understand that there are many people around the world with the same condition.
But for many people, accepting the diagnosis is not easy; it can bring memories from the past about occasions when the symptoms were most present. Perhaps from social events, childhood or school.
It’s easy to think of ourselves as different and inferior. We don’t feel good enough and sometimes we suffer from low self esteem.
One of the most important things to remember during the period following diagnosis, is that Aspergers can be a gift as well as a curse. Yes its true, sometimes we struggle with life and social skills that are easy for many Neurotypical (NT) individuals. However people with Aspergers Syndrome have many different abilities and qualities. The ability to see and understand the world in different ways with a different perception can add so many gifts to the world.
If you haven’t seen the movie about Temple Grandins’ struggle with autism and her subsequent achievements in life, we recommend you do. Not only did Temple find a way to overcome the Emotional distress, but she also gained a PHD in animal science and became an internationally recognized speaker in the Autistic community. Temple is truly an example to us all.
Without the qualities of Asperger’s Syndrome, we wouldn’t have the pioneering theory of relativity that was developed by Albert Einstein, or the widespread adoption of the Windows operating system when Bill Gates created Microsoft. It’s important to find your contribution to the world, however big or small.
Because the whole issue around diagnosis differs from country to country ( and state to state), we would love to hear your experiences. Many people often ask about the possibility of getting a free diagnosis, so if you have found a way to get one, please leave a comment below.
I haven’t had very good luck with UK GP’s when I know something that my GP does not. I do not find them amenable to learning from their patients, in fact most seem to resent it. I wish there were an easy way to get tested in the UK.
I agree with you Kate. I have long known that my daughter was different . She couldn’t make friends, couldn’t share, fixated on subjects, seemed very young for her years, was told that she was ‘weird’ at school, couldn’t make eye contact, couldn’t read social situations, was easily overwhelmed, suffered meltdowns . . . The list goes on. It’s only just recently that we’ve realised that she fits the Aspie profile . . . strangely enough, so do I. But health professionals, actually even our friends don’t take us seriously, because we’ve gotten used to masking some of the signs. Although now 14, it’s becoming more difficult for my daughter to mask it. So we’ve taken her out of school, because she was showing real signs of not coping. She was slipping under the radar at school, as someone needing support. I wish it was easier to get a diagnosis in the UK too. We can’t go down that route because at the moment it would be just too much for her to cope with.
It was very interesting, but for me rather confusing. According to the Aspie-quiz I have both aspie and NT traits (108/200 & 95/200). So I thought it would be worth trying the Broad Autism Phenotype Test. According to this I was above the cut off on all 3 scales – 117 aloof, 106 rigid & 92 on pragmatic and therefore either autistic or on the broader autistic phenotype.
I took the most recognised Asperger test and found myself in both catagories. I also took the aspergers test and I wasnt able to answer the questions clearly so it said I was neurotypical. I went to someone who tranfered me to a Social worker with AS experience and a MSW degree which I questioned him 3 times if he was right, He says am still aspie.
I scored 35 in the on-line test, but have reached the age of 65 without any major problems. This result does help explain some of the things in my life that I have considered as abnormalities. I don’t think that an official diagnosis would make a great deal of difference at my stage of life.
I scored the same and have a son who is the same the clear difference between the two of us has been the management of “FEAR” I have since my teenage years always been avidly fearless about things but not by nature as a boy I was constantly bullied and had few friends but then had like a switch flipped in my mind made a determined effort to introduce myself to new people in the school lunch room and punch bullies in their faces. Got a few black eyes and made some friends and began to emulate alpha male behavior but have never been a true alpha because the the underlying ASP symptoms. Got me through most of my life and so I would suggest others try my two step approach. (A) Force yourself to make new friends or simply introduce yourself to people even if you don’t really care or want to know what their interests are ask anyway and (B) stand up to those scariest people and scariest moments as a challenge or dare!
In Germany getting a diagnosis for adults is rather difficult. A GP can send you to a psychiatrist or neurologist, but very fes are specialized in adult Autism. There is a German webforum, where a member has collected a list of soecialists all over the country, he mailes it on request.He can be contacted via aspies,de
The problem is our insurance system. Insurances may not pay for a second opinion as in my case. I saw a specialist who wouldn’t diagnose me as autistic, but I later learned he was completely oblivious to the different traits of Aspergers in women. Still, my insurance won’t pay for another attempt, saying “you’ve seen a specialist, he said you don’t have it, so don’t be stubborn, you’re just a patient and he knows better”. The better way would have been to go to one of the two universities in Germany who offer adult assessment, Cologne or Freiburg. They recquire a request for a questionnaire via phone. This has to be sent back filled in and then the university will invite you for further tests – or not. Waiting-time will be about six months. There also is a private institute in Langen/Hessen, but they charge €500 for an adult diagnosis. The process for children may be easier, I do hope it is.
An observation of mine over the years: How much single-minded perseverance and visual/conceptual thinking does it take to get through Medical School? And then we suggest out loud that those very traits the Medical Professional so highly values (because he/she has life “figured out” and is a healer after all) are somehow causing your illness/dysfunction/reason you’re in their office… It would have to be difficult to accept. I feel for them. Find a different professional. Best Wishes.
Last year, I got a look at my medical records and was surprised to find that from the very beginning I was identified as a High Functioning Aspergers. I tried to get the records from my previous doctor, but they couldn’t be found. I don’t know when or how I had gotten the diagnosis….though from what I’ve been learning now, it seems to fit.
Meanwhile, I scored a 39 on the test.
Never thought about whether it could be used to get accommodations or other assistance.
I have known that my son has aspergers since he was six but all the medical professionals we saw said he wasn’t, leaving him with no help at school and no help for us at home. Now aged nine he has just scored 45 on the test. HELP
Where do you live Wendy? That attitude is very careless of them. If you are lucky if won’t have major implications, but paired with the wrong set of life situations, can quickly cause them to become suicidal since all the NT CBT therapy can actually lead them to condemn themselves, as it assumes this like literal thinking etc can be correctly. Without stress maybe, but under extreme stress and anxiety, the autism mind in my opinion reverts back to black /white thinking every time, and makes recovery very difficult. After diagnosis you are better able to deal with it because you don’t have a reason to self condemn in the process.
I scored a 44 on the test. As a child in the 80’s I was diagnosed with ADHD. Childhood and school was tough to say the least. But I had other problems that the ADHD didn’t fit. Now I know what it is it is nice to finally see where I fit in this strange world with so many ambiguous rules. They should print a rule book. Don’t know that getting an official diagnosis would help much since I am a stay-at-home mother to 3 beautiful children. But it is really nice to know so I can find help on my own.
I knew that I was dyspraxic, I had a non – standard diagnosis of aspergers traits, The psychiatrist said aspergers traits not a problem, my certificate said ASD. I learned about adult dyspraxia, I realised my problems were dyspraxic, which is far worse. A diagnosis from the N.H.S is often not possible or barely applied.
Trying to get my son a diagnosis now.. he is 5 but I have been badgering the doctor and health visitor since he was crawling. . At this point he was lining up cars and completing jigsaws at an alarming rate without checking picture at all. He is still having to wear nappies because he is only using the toilet for weeing . This, I was always told he is a bit slow he will be fine. Since I have been badgering the school as well I have now gone on a 12/14 month waiting list for paediatrics. I have applied to do a tv programme because they would help me get a diagnosis for the programme content. I am praying I get through as they have specialists lined up already for this. I am at a state of desperation now .. he is being bullied at school which school have been dealing with but more recently it has escalated. I scored him 42 in the test which I know is only accurate to my knowledge but really it is re-iterating what I have felt for years. I have to say that here in Wales it seems to be almost like a taboo subject because I really have had difficulty in getting anybody to even discuss the possibility of it. Sorry… I rattled on a bit I do apologise. .. for anyone seaking a diagnosis I wish you the best of luck and hope that it will lead to better times as I am hoping for myself and my precious son.
Hi Rachel, my son is almost 14 & he scored 40 on the test. I have been in contact with the school paediatrician since he was 9 years old, as he has so many traits for aspergers; obsessions, list making, rocking & twitches & repetitive verbal outbursts. He is also anti social, & has problems with understanding people’s feelings & saying very inappropiate things without realising. The problem I have is that he is very clever & knows what the doctors want him to say! We have bounced between aspergers/turettes syndrome, then deciding he is not either. I am fortunate that my son doesn’t have any problems at school, so decided to leave it be as was getting fed up with going back & forth & not getting any further forward. I wish you & your son all the best.
Keep pestering those drs. my son is 9 and 1/2 and recently diagnosed with aspergers and possible ADHD. no eye contact from very early age and I’ve mentioned this to drs and teachers for years with a ‘he’s fine’ response. I understand that lack of eye contact is now the key factor in aspergers and drs and teachers need to take more notice. parents know their children best and shouldn’t be delayed by a system that thinks it knows your child better. very best of luck to you and your family. Hang in there.
As yet i’ve not had an official diagnosis. I’ve used this and many other test websites to self diagnose. All show a high chance of me having Asperger’s. I have had a 10min (10 question) phone call and they’re ‘assessing my case’. I really want to share my mini experience to enable to encourage a shift in attitude to oneself. I’m a practicing Buddhist (of Nichiren Daishonin) and chant the title of the Lotus Sutra. For many years i thought that i’m not chanting enough and got really frustrated because no matter how much i used my practice, my symptoms of anxiety and depression etc where not going away. Now it seems i’m coming close to a diagnosis, i’ve realised that actually, i’m using my Buddhist practice extremely well. Yes i have issues but i pretty much lead a normal life. I scored 40 on the quiz and i believe that’s quite high.
So, whatever faith you believe it (or not as the case may be), use it well and/or switch the attitude to ‘i am doing brilliantly’.
I’m 49 and am only just realising that I may have ASD. This is the only thing so far that ‘fits’. I grew up being called ‘weird’, a bad apple by my parents and was told I was ‘born with a bad philosophy’ (whatever that meant). I was bullied and excluded so spent most of my childhood alone. The longest I held down a job was 6 weeks and often walk out of projects. I can’t stand supermarkets or small children as the noise is just intolerable. I get severe IBS in every social situation and have to come home to lie down. I find the transition between tasks really difficult and travel is almost impossible. I hate change of any kind. I find people boring and can’t do chit chat at all. I see patterns in everything and funnily enough, I’m an artist and do botanical subjects in textures, like string where I emulate the patterns that I see. I don’t understand sarcasm or irony and I mostly don’t understand jokes. I take everything literally much to my partner’s frustration. I feel permanently anxious and have bouts of depression. Most people think I’m normal and I have learned to live my life like a theatre play where I simply read the script. Often what I say and do is done without feeling and only because I feel that this is what is expected of me. I have repetitive ‘rituals’ and rub my fingers on clothing for ‘comfort’. I could go on. How important is it for me to be diagnosed officially? I live in France where ASD is not really recognized so this is an issue for me.
thanks for sharing Cathy. The decision to go for an official diagnosis is purely a personal one. Ultimately you need to decide what it can give you, that could give you access to support that you need but in some countries a diagnosis may effect medical insurance.
I have just done the AQ Test for my 13 yr old daughter, who has had problems since birth, her score is 38 which is above the borderline for Aspergers, I fought hard all through primary school to get her seen and a diagnosis, sadly I have got no where, now she is at senior school all they say is she gets enough help through the day to manage, but I believe she should be given a proper diagnosis…
dont give up. She needs a proper diagnosis to go forward. My granddaughter has now got her A/S diagnosed at nearly 16. She is highly intelligent so no one realised that she had a problem until she became self harming and suicidal. Now we all understand her anxieties, she is not quite so alone. Don’t let your daughter get to this stage.
WOW! There’s so much to say, I don’t want to “say” anything. I’m 33 years old and I scored a 35 on this test. I suspect that I may have scored higher if I had taken the test years before I learned how to “read the script,” as another poster worded it. I’ve always been odd, a social outcast, but through many hard knocks learned to respond to others in the appropriate ways for many situations. The act leaves me exhausted, and after a full day of work I don’t want to speak to anyone. If I go out to a social occasion, I’m ready to leave in two hours. As intelligent and hard working as I am, moving up at work eludes me, because I don’t know how to “play the game.” I rock, for crying out loud, and this has always been my dirty secret. It’s hard for me to form intimate attachments; add to that the time I need to hide and rock myself into a state of bliss, and I feel no one on this earth knows me. I’ve been trying to WILL myself to stop rocking for years. Gosh, I wet the bed well into my preteen years–if only I had known; if only my parents had known! I’m often accused of being unemotional or a jerk or a B***h, and I really just don’t understand why a simple truth is so bad, especially in situations where an honest critique improves things, especially since I often say nothing unless my opinion is solicited. Anyway, sorry for vented. I’m anxious to start my research on this, and perhaps get an official diagnosis. Having this information could have changed my childhood, thereby changing my life!
A friend of mine went in crisis in 2000 and it has taken until 2014 for him to be diagnosed, with the staff indicating he was NOT a subtle presentation, and fairly easy to diagnose.
However the delay in diagnosis meant that people admitted him to hospital for 6 months subjecting him to ECT and other unnecessary drugs. In his undiagnosed state, it lead to multiple attempts at suicide, the earliest as a child and the latest in 2008.
We believe all the medical notes will be listed with comments that should have flagged him as a potential person with autism, and surely constitutes negligence of the part of all concerned. We have identified legal judgement where very substantial damages have been awarded especially where removal of liberty has been decided upon, with no resultant changes in medication to reflect a worsening of another other condition that might be present.
He lives in the UK, so anyone with any advice on how to help him more forward on the legal front, please contact me via email. Maybe when sufficient sufferers make and are awarded damages then they might just undertake more awareness training and behave accordingly.
do you have information on aspergers syndrome in females?
lm in Australia and moving to a resource limited city there are no Dr’s of any kind, that lv been able to find,that special in this area or support groups other than one for female partners of men with aspergers.
Yes, check out AspienGirls website
p.s. The test was strait fowards , l scored 39.
I have a score of 48 on the test and was diagnosed with Aspergers, dyspraxia and ADHD November ’14. It took me nearly 5 years to get the diagnosis – I was tested for dyspraxia in 2010 at the Jobcentre but they couldn’t give me a diagnosis. Then followed years of going to my GP who referred me to various places who couldn’t help and my GP told me getting a diagnosis was ‘too expensive’. Then I looked at the Autistic Society’s website and discovered an Autism Act was passed in 2009 whereby an adult who thinks they have an ASD is entitled to proper diagnosis. Armed with this knowledge, I wrote to my GP (yet again) and she immediately referred me for diagnosis at the local ‘autism centre’. I am 62 and it is such a relief to finally know why I am who I am. I thought I was just getting a diagnosis but I am also being given a lot of support to help me sort my life. It is amazing! I only wish I had been diagnosed much, much earlier and had not had to go through 62 years of very difficult and stressful events all related to the conditions I was born with.
I got a free diagnosis. Not entirely sure about the result though. It found that I did not have an autism-spectrum related disorder. However, the assessment focused entirely upon an abusive childhood, and blamed my difficulties since on my upbringing (an easier option) rather than to probe deeper. I think people generally are the experts when it comes to themselves, and I found it very hard to express certain things during the process, finding myself trying to anticipate what I thought they wanted to hear, rather than what I found I couldn’t say (if that makes sense). I fear I led them to an incorrect diagnosis in a way. I wanted the diagnosis as it would have taken away much of the blame that I lay on myself, if there was an actual reason that I have struggled so much in life.
I have taken the online Asperger’s test, and scored 40 incidentally.
As to how I got to the free diagnosis point – it was a referral made by the GP indirectly via the local mental health services (UK) – I had never asked the GP for a diagnosis directly, but I feel pretty strongly that they would not have supported it in any case.
Don’t feel discouraged from goimg for an independent evaluation, John. Your ‘free’ diagnosis, particularly in the UK where there are agencies paid to cover up disabilities as a cost cutting measure, should not be taken as the final Word!
If you needed a support worker during your assessment you should have had that support. Consider contacting the mental health charity MIND for advice and information. They may be in fact geared towards mental health problems more than Aspergers syndrome and other conditions, but the sense of exclusion, discrimination and difficulty in accessing services and support is just as relevant, and could result in your finding a more accurate diagnosis and access to financial, status and life skills support.
I scored 46 on the quiz! I am almost 66 years old and have had a struggle all my life, being abused as a child for being different and difficult, such as having a meltdown because I needed to sleep with my rubber boots on. Just always weird stuff! I have never been diagnosed with Aspergers but have been diagnosed with Tourette’s Syndrome because of tics and obsessive tendencies I have. Maybe it is just Asperger’s! To me this is like “coming out of the closet”! It explains so much of why I am the way I am and maybe people will stop expecting things of me that are so hard for me, like making phone calls and left turns. I plan a whole route before going to town so that I can avoid making any left turns. To me it seems necessary but to others it seems insane. Now I am going back to work on my latest obsession, making blocks for my grandchildren. I won’t be able to do anything else until the project is done. The problem comes that sometimes projects seem to expand as I do them and it is difficult to ever see an end. At some point the dishes need washed! As far as a formal diagnosis, since I am already retired, my main reason for liking te idea of a formal diagnosis is for understanding from critics of my weirdness and also to possibly be approved to have a support dog go with me in tough situations since I am much better able to handle social situations with a dog present. Does anyone know if Asperger’s qualifies for a support dog? I have the dogs, even one who has his AKC Canine Good Citizen. What I need is the authorization that would enable me to take him everywhere with me.
I love the idea of a support dog. It, genuinely, had not occurred to me before today how much more comfortable I am in social situations when I have my dog with me.
I scored 45 on the test. I am 41 and have only just found out about my conditions. I have paid for a brilliant specialist in Queensland Australia. I have been diagnosed with PANDAS, MTHFR polymorphism and Sheehans. This of course comes with Tourettes, OCD’s and much more. My doctor has been extreemly helpful. My advice. Do not use government funded doctors or facilities. Read instead a book called Beyond Mental Illness by David Moyer This has been the most helpful information for improving symptoms. Which to me is a priority. Good luck all out there with similar issues. I feel for you and understand your frustrations. Please read to book if you want to feel better. Not just emotionally and mentally but physically as well. This book has helped stop symptoms as extreme as seizures. My tourettes and OCD’s are improving along with my interactions with humans in only 6 months. ( Animals and plants have never been an issue.) I have other issues like PTSD from dealing with the world out there without a diagnosis as people are great at punishing those who do not fit their mind set. Much better off without their opinions. So don’t listen to their negative bullshit. There is plenty wrong with Neurotypicals too. If anyone in Aus wants a doctors info that is awsome, e-mail me at firstname.lastname@example.org
One of my grandsons has recently been diagnosed as having ASD. Because I have found it easy to understand him, and because I have had mental health difficulties since adolescence, I took the on-line test myself. I scored 35, and at the age of 72 it is an enormous relief to find logical reasons for my lifelong ‘deficiencies’. Now I will concentrate on supporting my daughter , who also scored highly on the on-line test, as she deals with the daily difficulties of caring for hewr highly intelligent son