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Transcript of Diagnosis - Good, Bad or Indifferent

This is an alternative format transcript of our online Q and A on deconstructing autism with Ann Memmott, which took place on 5 October 2016.

Please click here to see the original.


Research Autism

Welcome to our online Q&A, thank you very much for joining us. Thank you to our guest Ann Memmott for being with us today.

Ann M

A pleasure to be with you.

Research Autism

We will try to get through as many questions as we can in the next hour. Your question may not appear immediately, but we will publish and answer them one by one...

Research Autism

First question by email: Dear Ann, has any research been carried out to identify if women are being wrongly diagnosed with ME/CSE caused by years of stress/exhaustion due to camouflaging their autistic behaviours? Kind regards, Helen.

Ann M

Not enough formal research of note, no. But anecdotally, a vast number of my autistic friends and colleagues have had episodes of exhaustion and related things. These follow a lifetime of trying to be something they are not. I did, too. I think it’s as true of any gender – that feeling a desperate need to pretend to be ‘normal’ (whatever that is...) may leads to huge extra effort, every single day. Little wonder we may end up exhausted. It’s certainly true that many women end up with initial diagnoses that were not correct..or were caused by pressure...but then find out that it was autism underlying it. We need more good quality research into the links, certainly.

Comment From Ned

In regards to the heterogeneity in autism symptoms and etiology, how should future diagnostic processes be influenced?

Ann M

Ned, that's a big question. Part of the reason I'm looking forward to the conference is to discuss that exact issue with my fellow speakers. Certainly we need really clear ideas on what autism is, and is not. It will be interesting to see what happens with the final version of the ICD. Vital to have good quality input from the autistic population as well as from established non-autistic specialists, of course.

Comment From Steve

What are the most common stereotypes or misconceptions of autism that you come across in your work?

Ann M

Not an exhaustive list...but (for example) that it’s all about ‘badly behaved boys’. Not a phrase I like, but one I hear too often. That we’re all computer geniuses. Or indeed geniuses of any sort. That Asperger syndrome is ‘mild’, and therefore can be overcome with a better attitude. That we lack empathy. That we are violent nasty people. In faith communities, sometimes that we lack souls and there’s no point including us in worship. I get all manner of really strange myths and misunderstandings of this sort. We know that autistic people are, on average, very caring about others (but may display this differently), very moral, very fair. It’s a shame that some people had misunderstood our difficulties within communicating in non-autistic ways, and decided that we're not worth knowing. Truly delighted to know so many fantastic autistic individuals.

Comment From Guest

Do you feel that the emphasis on the autistic voice, though welcome, risks cutting parents who advocate for their non-verbal children out of the debate? We too are part of the autism community

Ann M

It's important to hear from everyone possible, in ways that respect and enable their voices. I feel that it should never be a question of removing or silencing voices/communications, but of making sure we have the right balance. A good few of my autistic colleagues are non-verbal, and very strong advocates for themselves. Others of course are more than happy to have parents, carers and other people advocate for them.

Research Autism

Thank you for the questions received so far, please keep sending them in...

Comment From Jim

Do you feel there is any benefit to a later diagnosis, perhaps focusing at an earlier age on strengths and needs rather than the diagnosis?

Ann M

Jim, this is where we could do with a good bit of research into long term outcomes. Some would say that earlier diagnosis leads to better outcomes. Others debate whether those outcomes are really useful ones. In our family, all of us had a late diagnosis...and each of us felt that we'd truly wished we had known earlier. But it's such a personal thing, perhaps. I'd love to see support services, schools and communities that really help each young person to be their best possible selves...whether with a formal diagnosis or not.

Research Autism

Another question, emailed from Vanessa: Is it true that girls with autism are different to boys with autism and that makes it harder to diagnose them. I have a daughter that might be autistic but can’t be sure and want to get it right in approaching her about it.

Ann M

Are girls different to boys and harder to dx? Generalising wildly, often yes. There were the old stereotypes about autism equalling ‘badly behaved boys’, to use a phrase I hate – but I’ve heard others say it. Or 'trainspotter types' - again, male. Arguably half of autistic people are female. Generally, we have female interests, not male ones. Generally, we are quieter than the males. (Exceptions will apply). If we’re not creating trouble, perhaps no-one thinks to diagnose? We’re seeing research suggesting that girls may show fewer repetitive behaviours and collect fewer things/collect things differently to the boys, too. So diagnostic teams may miss clues. I think many of us are better at disguising that stuff. Or, diagnosticians are looking for the standard ‘lining up toy cars’, and missing ‘collecting 50 pairs of shoes, lined up really neatly in the wardrobe...but not worn....’. Or ‘collecting data on a top celebrity’, etc. I think being positive about autistic women is important. There’s good role models out there. Women who are autistic and making a big impact. Talking about those positives is often a way to open a conversation. Lots of good female autistic advocates online to contact also. Worth a search for some.

Comment From Guest

Does Asperger’s syndrome still exist?!

Ann M

Depends who you ask. In the USA diagnostic manual, DSM 5, no. Currently here, the ICD 10 still has Asperger’s Syndrome as a diagnosis. Fewer professionals are using it now, though. We still have ongoing research projects looking at whether there is truly a difference between Asperger’s Syndrome and autism...or whether some forms of ‘autism’ were in fact autism plus learning difficulties plus speech/language difficulties. We know for certain that Asperger’s Syndrome is not a mild form of autism. It’s autism with a standard or higher IQ, and no speech delay, in effect. In other words, I'd say 'autism'. Another area where the good research will really help. I know that fellow speakers have a variety of views on whether autism itself exists, so that makes it even more interesting as a question.

Comment From Ali

My son, just turned 20, is currently in hospital under section, and being given antipsychotic medication against his wishes. He has hurt anyone who has given him the medication (as he doesn't believe he needs it), and consequently has spent the last 10 days in seclusion. I have known for a long time that he is on the autistic spectrum. I did not want him to be "labelled" as a child, as he is very bright, and coped well with school - just understanding things slightly differently and wanting to do things his own way. However, at the age of 15, he started using cannabis heavily, and became violent at home. He is frightened of obtaining a diagnosis, worried about how it will affect his future, and denies that he could be on the spectrum. The consultant at the hospital has given him a diagnosis of "psychosis with as yet unconfirmed ASD". I believe that many of the "symptoms" for which they are treating him with heavy medication are as a result of his "black and white" thinking, and beliefs which have become entrenched over time. However, I have been told that even if he obtains an ASD diagnosis, the support I want for him (perhaps CBT or psychological talking therapy of some kind) would be very difficult to get, as resources for adults with ASD are so scarce. My questions to you are; 1) How do I convince my son that a diagnosis would be more beneficial than not, 2) Do you believe the support following a diagnosis, is really there? Many thanks, Ali.

Ann M

Hi Ali, that's a really difficult situation for your son, and of course for you as a parent. Yes, those are good questions. Convincing your son about a possible diagnosis - that's not always easy. I'd say that emphasising the positives of autism, its strengths, and looking for good role models in the autism community, can be a starting point. I'd also say that I've done a lot of work with mental health units in the last couple of years with a training team, and we've found much of the distress behaviour was due to sensory difficulties. The autism diagnoses helped with that, because they could adapt the sensory/social 'overload' for that person. So that may help as much as any other sort of support. Worth exploring, perhaps. I really hope that you and he find your way through all of this, and get that good support that is needed.

Comment From Guest

Do you believe that a diagnosis is a ‘gateway to services and support’? Has this been your experience - with your son too?

Ann M

For adults? Speaking personally, it really wasn’t easy for us to access support in our particular area. I can't speak for other areas, though. I spent two years trying to access a service for me. Apart from being more exhausted at the end than I was at the start, and getting targeted by a ‘predator’, (a potential support worker who worked out that I was an easy target)...nothing happened. Our son was blessed with the most fantastic schools that got him through a lot. But Uni was a struggle, with no real interest from the disability adviser in autism or how to help. And nothing much in the way of support now apart from those wretched ‘meet in the pub’ events. If you have severe sensory difficulties, it’s the one place you really can’t meet. I’d love to see proper thought and funding put into support and services. We definitely need more available. I’m generalising of course; some parts of the country do have a better offering of support services. For children? Arguably there’s better provision in place than for adults. But it’s still such a struggle for so many families. Hoping for much improvement there too. The advantage of diagnosis tends to be about self-discovery, and families learning what works really well for someone. Good training in autism is important, I think. Glad to work with some lovely people nationally on that. A lot of the time, I find autistic people support one another, for example online. That informal sort of support can be more useful at the moment for some.

Research Autism

We are half way through the session already. Interesting questions (and answers!) so far and another 30 minutes remaining...

Comment From Fatima

I am quite sure my son (2.5years old) is autistic because of the way he behaves but my GP has told me that children develop at different rates and he will probably grow out of it. Should I ask for a second opinion or just wait? Thank you.

Ann M

Difficult situation, I agree. My colleague Prof. Simon Baron-Cohen has some useful online tests for different age groups, and it may be handy to work through some of them....then re-ask for a referral if you are still concerned. The link is https://www.autismresearchc... None of those are diagnoses, but they are a good starting point for asking about one. Meantime, there’s no harm in seeing if behaviour improves if you make life a bit more ‘autism-friendly’. Lots of good materials on that (for example) the National Autistic Society website at www.autism.org.uk

Comment From Jane

Will the APPGA be looking at the good evidence that says ABA can help autistic kids learn life and academic skills - yet still it is really only available to rich families in the UK?

Ann M

The choice of therapy is a very individual one for families and autistic people. I’ve seen all sorts of therapists. Some good, some bad, some indifferent. I cannot speak directly for the All Party Parliamentary Group for Autism, as I am an adviser for them rather than one of the Government's own MPs or Peers. But I do know that they have good representation from ABA organisations and other organisations, and we’re familiar with their data. Research into best approaches is ongoing. It also depends who you ask about ‘what is a good outcome’. Opinions from autistic people, whether verbal or not, often differ on this. Many are currently unsure that ABA is their therapy of choice. Others may find modern version of it from respectful practitioners to be of value. We shall see what further research reveals, on ABA and on other forms of therapy and support.

Comment From Liz

I am in my 60s and my local NHS autism diagnosis service is proposing to give me the ADOS test. Is this really suitable? Am I able to ask for a different test such as DISCO or do I just have to go with what they say?

Ann M

Hi Liz, Ah yes, I've had various teams practising their diagnostic skills on me using all sorts of tests, including ADOS. Arguably it's a strange one for most adults, but quite entertaining in a way. As many diagnostic teams are highly trained only in one test, that may be the only choice. Worth asking, though.

Comment From George

You said in a previous response that some people at the conference you are talking at don't believe in autism. If they don't believe in autism, what do they believe in? Father Christmas?

Ann M

I think I will let them explain themselves at the conference itself, but (as I understand it), some believe autism is a collection of different things rather than a single diagnosis. Personally, my view is that autism exists as a definable neurodiversity.

Comment From Kathie

How do we get away from employers thinking autistic people are only good for jobs in IT and engineering?

Ann M

Yes, huge difficulty, this one. As it happens, I used to be a computer consultant. But I’m also an artist, photographer, worship leader, listener. Our son's degree was in Psychology & Counselling. Not traditional 'autistic stuff' (to use a phrase...). So many of my autistic friends and colleagues barely know one end of a computer or engineering kit from another. Our dedication to a task can mean we become good at anything, including the caring professions. I think better education and training, and hearing from a wide range of autistic people, is so important. Good research would help, too. Trouble is, we are missing a lot of the adults. Two fifths may still be undiagnosed. Arguably most of the older women, too. So we don’t truly know what we all tend to do for a living/hobbies, as yet. Looking forward to good further research in this. Employers could benefit from such excellent people, by hiring more of us. Dedicated, honest, passionate about our work. Yes, the stereotypes get in the way.

Research Autism

We have just 15 minutes left, time for the last few questions...

Comment From Morgan

I feel compelled to respond. Firstly I am finding Ann's comments extremely supportive and balanced.

Comment From Morgan

Secondly regarding women and diagnosis. Having had a very traumatic experience myself from the local NHS team, i feel compelled to share my experience. My team used the ASOS 4 which was totally unsuitable for high functioning adults. I felt the screening tools were not adequate and did not allow me to be myself.my autistic traits are well hidden it seems the camouflaging masking effect.. It would have been much better for my GP to have sent me to a specialist centre such as the lorna wing centre. More needs to be done to educate local teams regarding the differences in males and females, especially when it comes down to repetitive behaviours/special interests.

Ann M

Thank you, Morgan. Yes, you are right that some teams are not yet familiar with how to diagnose autism in females. Generalising wildly, autistic women are not like autistic men. (Exceptions apply of course). We're much more likely to be missed by teams who may be looking for traditional male hobbies, interests, dress, attitudes, behaviours. Arguably they miss a good few of the men, that way, too.

Comment From Guest

Do you think a more encompassing label of neurodiverse is where we are heading?

Ann M

I think we are. Even the medical journal, The Lancet, was describing autism as a neurodiversity in one of its June 2016 copies. I think autistic people often bring huge strengths to society, and - whether we do or not – we are all people of great value, worthy of respect and love. Our way of communicating, and sensing the world around us, is different, not broken, in my view. Certainly we need good support for individuals, families, carers, schools, etc. In a world that is far from ‘autism friendly’, it can be a daunting place to be. But we’re getting better at understanding autism and its differences. I am confident that mutual respect can grow. It's good to see neurodiversity being discussed so much more, and seeing new related identities such as 'neuroqueer' emerging, also. Lots to discuss, eh.

Comment From Guest

My boy is autistic but with severe learning disabilities on top and zero sensory issues. I just find so much of what is said about autism doesn't resonate with how he is: how can we ensure that the whole of autism is not represented by yet another stereotypical presentation?

Ann M

An important point. Each individual has their own profile, within autism. It's vital that we respect the differing needs, and make sure that there is good support and really good choices for everyone. Getting that balance right is an ongoing discussion, and (hopefully) will lead to some good outcomes for all.

Comment From stretch

Just a comment. I was recently diagnosed (Asperger's) at 63. I would encourage anyone who thinks they might be on the spectrum, whatever your age, to pursue a diagnosis. Older people deserve the right to die at peace with themselves and with at least a degree of self-knowledge and acceptance.

Research Autism

We will be ending the discussion shortly, apologies to those who haven't had their question asked today...

Comment From Liz

Another question, only if there is time and not other people waiting, Can autism be diagnosed without an early childhood history? I am being told this is the only thing that is missing but I can't remember and have no records or history from my parents.

Ann M

Stretch, yes, I think (from memory) that about 70% of people find a diagnosis to be a relief. Some of course will prefer to self-diagnose, and I respect that choice.

Liz, yes, I believe it can...though the diagnostic team may ask for anecdotes from whoever knew the person at the youngest possible age (whatever that was). It will also depend on how strong the other evidence is. Definitely something for people to discuss with their team, and find out what has worked elsewhere for other teams. For older adults, a real problem when (for example) parents are no longer alive.

Comment From Claire

Will it be possible in the future to develop a diagnostic tool especially for women? They present so differently to men.

Ann M

Claire, some specialists are working on the answer to that one. I'd value teams using a different tool/set of questions, certainly. Though it'd have to be on the same set of criteria...just making sure they are looking at the evidence in female-appropriate ways, perhaps. So many of my female autistic friends waited so many years for a final diagnosis. It does need extra guidance and tools, definitely.

Research Autism

We will finish the discussion there. Thank you Ann for answering so many questions today, very informative indeed. We look forward to seeing you in two weeks.

Ann M

Thank you to everyone for your questions, and to Research Autism for inviting me.

Comment From Liz

Thank you Ann

Research Autism

Ann will be speaking at our next conference ‘Beyond Autism: What does an autism diagnosis mean?’ taking place in Manchester on Wednesday 19 October. You can find out more on our website: bit.ly/BeyondAutism

Research Autism

If you have any comments about today's Q&A please email Anoushka at events@researchautism.net. Follow us on twitter @ResearchAutism and Facebook https://www.facebook.com/Re... to hear of future events. Thank you.

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Updated
25 Oct 2017