ASD assessment, AIBU to ask for second opinion? Can I do this?

[DoubtingDoris]

After a long wait for my local NHS service, I've just been through assessment for ASD as a woman in my 30's. The questions seemed more aimed at what I'd consider traditional ideas of autism, not the stuff about women with types of 'high functioning' ASD.

I had to look at a child's book and make up a story. The assessor called my parents and asked if I'd been preoccupied with wheels or spinning objects, and could I follow rules in conversation. He didn't seem that interested in my sensory issues. He maintains that my executive function problems and social issues are learned responses to my behaviour from possible ADHD, rather than ASD, causing my considerable anxiety problems. I possibly have inattentive type ADHD, but still think I was seen as 'weird' at school for more ASD reasons than ADHD. I didn't interrupt people, and was quite quiet but was generally odd and out of step. By secondary school I learned to mask by watching others, and joined a drama group to study how to act like a normal teenager. Got good results academically etc.

Anyway, the assessor says there's overlap between ASD and ADHD and I have traits of ASD but not enough for a diagnosis as far as he's concerned.

Can I get a second opinion? I'm really not happy as I don't think the full picture was being assessed.

I'm sure you can ASK for a second opinion, not sure you'll get one, or a different diagnosis, unless you can provide additional info

Or pay privately for an assessment, if you can afford it?

So, keep asking until you get the answer that matches your untrained opinion?

You're more likely to get the answer you want with a private assessment. It's impossible to ignore the statistics and the common sense that private assessors are more likely to say what the assessed want to hear when they're charging a lot for the service.

Alternatively, you could listen to the man who has spent years and years in education and who has no personal interest in how he assesses you and has likely given the correct diagnosis.

Can I ask, as an adult in their 30’s who firmly believes they have ASD why do you need it written on a piece of paper? Not being goady, am genuinely interested. What exactly will this change for you?

Do you think meds would benefit you in any way in regards to the ADHD traits? Just trying to figure out the imperative in having something on paper? I know quite a few people in their 50’s onwards who I think would ramp it in if assessed for ASD (aspies in old term) but it seems none of them would see a benefit in being assessed now. Most who have children, have ASD diagnosed in the younger generation.

These things are not clear cut, so traits but not enough for a full-blown diagnosis is not an unreasonable outcome. As far as I know sensory issues are not part of the formal diagnostic criteria for an ASC though they are often co-morbid.

On the other hand ASCs can present differently in girls and women from boys and men, and they may be under-diagnosed. As far as I know you could ask for a second opinion. You want may want to ask to see someone who specialises in girls and women.

There is an increase in information about women and girls on the spectrum, it sounds like your assessor hasn't taken this on board!

The ADOS assessment is the same in adults as for children (or at least, mine was).

Vitara, it's well known that many clinicians are woefully out of date when it comes to autism, and to suggest that a private assessment is more likely to go the op's way is ridiculous. Private clinicians often have more experience in tricky cases than NHS ones who are subject to funding cuts and government targets.

I was diagnosed shortly after my 40th birthday. Until my official diagnosis I couldn't let myself believe that I was, as it felt like I was trying to make excuses for myself. My diagnosis has made a huge difference, I can be more forgiving of myself, I can use various strategies to make life easier, and as a result I have done more in the last two years than in the twenty years prior to my diagnosis!

It's not that I want to have anything, but I'm fed up of struggling and know that something not quite right with me. Perhaps it is ADHD, perhaps not.

I struggle with various things, and it is well known that women present differently to children. Maybe I am just being a nit picker, but I found it surprising that the things I struggle with were dismissed as not being really relevant to ASD. I have my own private reasons for wanting a definitive answer either way, and I just don't feel it was satisfactory. Of course I could be wrong! That's ok too.

Could not afford private assessment, so that's out. I certainly wouldn't keep going for assessment after assessment until I get an answer I want, even if I could afford it - that would not feel honest or genuine so would be worthless and actually cause me more anxiety!

Is the official term ASC now? Or is ASD still ok too? I know Asperger's is not the right terminology anymore.

Yes I fully understand that it could be traits just as he has evaluated. Which is of course fine, and actually does provide an explanation for some of the things that cause me difficulty.

Contact the National Autistic Society for help. He is out of date. Sensory issues are beginning to recognised as one of the impairments of autism. Indeed there is currently discussion about introducing it as part of the diagnostic process.

This is from the National Autistic Society

"One of the most common mistakes made by clinicians lacking autism experience is to make a number of observations that don’t take the issues related to autism into account.

Sometimes they may observe issues such as a person's clumsiness (possible dyspraxia), reading difficulty (possible dyslexia), poor attention span (possible Attention Deficit Disorder), difficulty with social communication (semantic pragmatic disorder or social communication disorder), mental health issues, or behavioural issues and diagnose that as the main condition. They may miss the fact that autism is underlying the obvious difficulties seen on the surface.

If you don't understand, or have concerns about, the diagnosis that you or your child are given, discuss this with the professional who made the diagnosis. You can ask for a second opinion, and you have the right to complain if you're not happy about any aspect of referral, diagnosis or care that you or your child receive from an NHS service.

I have two children with high functioning asd (no speech delay etc) and neither of them were ever preoccupied with wheels or spinning things. What a ridiculous idea that you have to do this to have autism. I would go private to someone who had experience of females with asd. We were told my dd didn’t have asd at 12 and then at 15 another two psychologists decided she did and actually has very little understanding of others feelings even now at 18 whereas my son has tons of empathy but talks about dinosaurs incessantly.

That assessment doesn't sound great. It sounds more aimed at children than adults and doesn't seem adapted for the fact that an adult has had years to adapt in terms of masking and learning patterns in storytelling. Some assessors also have very little experience in assessing women or the different ways autism can present in girls and women and an assessment by them for a woman is basically useless.

You could ask for a second opinion but I think you'd have a tough time getting the NHS to give you one/you might have to push a lot and still get told no. Plus you would be sent to the same people again anyway. It must be very disappointing to finally get an assessment and have it be such a let down in terms of the assessor actually assessing properly!

I do think that you might have to think about starting to save up bit by bit for a private assessment, possibly by someone who specialises in how autism presents in women.

Have a look at this information from the National Autistic Society - perhaps send a link to the person who diagnosed you:

"New Women and Girls online training

We have launched a new online module to support clinicians with the challenges of diagnosing autism in women and girls. The training is designed for professionals, but autistic women, their families and others will find the content helpful in understanding the differences autistic women may experience. Developed with autistic women and leading clinicians the content is interactive and features exercises, reflective activities and short film clips. The module has been funded by the Pears Foundation, which means we are able to offer it free for the first year.

I would push for a diagnosis from a clinical psychologist or psychiatrist who has experience in higher functioning autism and women.

To those above who say if you pay for a private diagnosis they will give you the result you want is untrue. The clinical psychologist and psychiatrists are bound by a ethically code and administer standardised assessments that have to stand up in a court of law so cannot just be paid to make a requested diagnosis.

Dont do this on your own - get help and support from one of the national autistic society.

For info - above
"ASD (aspies in old term)"

ASD is not aspies in old terms
ASD stands for autistic spectrum disorder. It is a diagnosis which covers the range of autism from those with very complex autism with no speech and very severe learning disabilities right along the spectrum to people less affected by autism but still with the key impairments - including social communication, interaction etc. There are university professors with ASD and people so affected by autism they cannot speak etc

Aspies generally refers to people with Asperger syndrome which is now generally recognised to be on the autistic spectrum.

Thanks everyone. I'd be a bit worried in asking for a second opinion if I was just sent back to the same man. He is a clinical psychologist in the team for ASD and ADHD in my local mental health service, and at any rate does know far more about the whole world of neurodiversity than me. At the same time I'm not confident he knows about how 'high functioning women' might come across. High functioning said tongue firmly in cheek when I apply the term to myself.

I'm waiting for a letter to come that has the report of my assessment and I think will wait to see what that says. I was particularly surprised by the question about being preoccupied with wheels and spinning objects.

Go to the special needs board on Mumsnet - you will get lots of supportive advice from people that have been through this.

Dont do this on your own - the system is stacked against you - get advice

Good luck x

That is not what I said. Clearly people who can not speak do not necessarily or usually have any intellectual disability with or without autism. I said that there are people on the extreme end of the autistic spectrum who are unable to speak and have other learning disabilities. That is only one group of people on the extreme end of the spectrum - because it is a spectrum.

Doubting Doris - please go over to the special needs board where you will get supportive help from families going through this themselves. Contact the National Autistic Society - they will give you up to date advice and put you in touch with key professionals in the field.

You do not need your confidence knocked or your desire to have your concerns answered sympathetically

Good luck x

I know I don't have low functioning autism. I just mean, thinking of myself as high functioning makes me feel privately a bit embarrassed. Quite frankly I've failed at so much. Socially, educationally, professionally.

I'm in a good place now and try to accept myself how I am, and try to be kind to myself about all the fuck ups. I also know I do have a few very positive strengths too. This isn't about throwing myself a pity party.

Of course not Doris - the diagnosis will help you see why you have had problems in those areas. Please please get help from a support group - it will make your life so much easier.

A fifty year old friend sat and cried when he realised he was on the autistic spectrum - only after his children had been diagnosed. It helped him see why he had problems in all those areas too - arising from his condition not his failure. He believes his not understanding led to his depression - he is certainly far far happier now

I am not going to continue to argue over terminology. My focus is to signpost the correct professional and personal support to the OP in a sympathetic manner. To finish here is the World Health Organisation 's direct quote on autistic spectrum disorder - highlighting the spectrum form mild to severe

" ...The level of intellectual functioning in individuals with ASDs is extremely variable, extending from profound impairment to superior levels"

Here is the Niace guidelines headed by Professor Baron Cohen - world leading expert in autism - Cambridge Professor - note the terminology ranging from .... to

"The autism spectrum is very wide, ranging from individuals with limited self-help or
independence or academic or verbal skills through to individuals who are in the gifted range of intelligence and fully independent but who have significant social difficulties. This wide spectrum means that how ‘symptoms’ present in different individuals may be very different, in part a function of the extent to which the individual can fall back on
general cognitive ability to devise coping strategies and the extent to which they are motivated to try to mask their disability in order to try to fit in"

A spectrum ranges from one point to another but within that there are obviously different presentations, conditions, challenges etc. Also as it is a relatively new diagnosis - it is changing and updating. For example, there is an controversial move to add PDA

Is it just me, or is the National Autistic Society website not working today?