It had to be done. Due to the popularity of the ‘first episode‘ I thought a follow-up was warranted. Autistic children are suffering across the UK, from missed diagnosis, misdiagnosis and tardy and inept support from CAMHS. So here be it (read it and literally, weep…):
This post is prompted by reading another blogger’s post. As they say, enough is enough – this issue has to be addressed. Let’s look at the main reasons that professionals disbelieve parents seeking diagnostic assessments, or support, for their autistic children:
OK, let’s discuss these point-by-point:
(1) The different behaviour between school and home is the most oft-cited example of this scenario, although of course it isn’t only necessarily ‘home’, it can be socially with friends and relatives too. All children behave differently between school and home. Only with autistic children the difference can be much more marked. In this case, we are of course referring to those children who mask in school, so that teachers do not see the challenging behaviours the family experience, that indicate the child’s autism difficulties.
What teachers need to remember, is that as a rule they have no autism training (at best a short module when training) – hence the Government has finally just put autism training on the agenda for all new teachers. (What happened to giving the existing ones some damned training too eh!) They also need to remember that they are not the expert in that child – their parents are! School is not a natural environment, it’s very artificial to have 30+ children bunched together in a room sitting listening to someone, so why would they expect the child to be their normal relaxed safe self, with all that peer pressure, school rules and expectations upon them?
When it comes to a clinic environment, the child is likely to feel inhibited because usually the clinicians are strangers. The child is likely to know they are there to be tested and observed and even if they are young, it’s an environment they are not used to. (Let’s face it, the diagnostic situation in the UK means it’s very rare for pre-school children to be diagnosed with autism unless they are at the severe end of the spectrum. This country is not good at early intervention sadly.) So in this clinic environment, the child will still not feel relaxed and safe, to behave as their true self.
So the question is why are professionals not understanding this blatantly obvious situation and instead automatically assuming parents are lying/exaggerating, or responsible for the challenging behaviours at home? When is common sense and logic going to prevail?
(2) Sadly, cynical professional attitudes towards parents is a widespread problem. So much so, I produced an information sheet on it: “Professionals/Authority and the Parent Blame Culture” The research evidence bears it out – read that document and your eyes will pop. It’s shocking and unacceptable. While you have professionals assuming parents are all useless idiots who are just seeking benefits, or are responsible for their child’s traits through poor parenting, there will always be a huge barrier to a child being diagnosed or supported. That is a huge failing in their duty of care towards that child. Why should prejudices, bias and outright negligence be allowed to prevent a child obtaining diagnosis and support? Is it any wonder there are so many autistic children suffering in the mental health system? So many autistic children being excluded, or electively home-educated, through school not meeting their needs? This is about the children, not about the professional’s personal views. Blanket attitudes based on a small minority of parents that may behave in negligent or nefarious ways, is idiocy. This also accounts for why autistic children are being misdiagnosed with attachment disorder. Another enlightening fact sheet about that here: “The Overdiagnosis & Misdiagnosis of Attachment Disorder” and a brilliant response in that regard by an Educational Psychologist Dr Hilary Dyer, to a diabolical article on the BPS website, stating that PDA is probably attachment disorder. Parent-blame has to stop!
(3) The autistic child rejecting their diagnosis (or potential diagnosis) is a really tough one, the name for rejecting a diagnosis that has been made is anosognosia and as you are probably starting to expect I might, I wrote something about that too: “Anosognosia and Autism – A Real Concern”
People might say, that if someone doesn’t want a diagnosis of this type of condition (i.e. a non life-threatening one) that they should have some say in this. An adult can make their own decisions in that regard about themselves of course. But when it’s a child and they are struggling and need recognition and support for it, there is no other option. There are many times when parents really do know best and children really don’t know what’s best for them.
As a parent in this position, there are times when there is really no choice. If your child cannot cope in school and school-refuses, professionals are (metaphorically or literally!) rattling at the windows, banging on the doors demanding to know why and unless there is a medical reason, the EWO will be round and the LA will be a-fining! With (2) above, clearly if you cannot evidence a reason for your child’s distress and most especially if (1) is in play, the only option is a diagnosis. All you can do is hope that one day your child will be at peace with it and accept who they are. But the problem is, when your child is highly intelligent and a great masker and mimicker, it can make things very tough for professionals who don’t really know their stuff to see through that. Having had an autistic child say before their assessment “I will act all normally and make them see I’m not autistic!” I can tell you that coupled with an incompetent CAMHS with an entrenched (2) viewpoint, it is far from plain sailing being believed! CAMHS need to understand that some children will be resistant to diagnosis and to possess the expertise to see through that!
(4) Restriction of resources is very common, cut-backs here, there and everywhere. But if someone has a condition they need a diagnosis of it. Because as many times as professionals say support is not tied to diagnosis, us parents know better and I can show you ten-fold (and then some) families who can prove otherwise. The NAS isn’t the only one to report on this:
(NAS page updated to remove comment since screenshot taken! Still available to view here however: http://tweb-cms.autism.org.uk/about/diagnosis/criteria-changes.aspx) Having seen information through a subject access request, where mental health staff discussed not diagnosing people they believed did not need services, I can tell you this is very real. Having also read many stories on parent forums where CAMHS told parents that their child didn’t need a diagnosis because they were managing in school (which could well be because of (1) anyway!), is yet more evidence. Again, shocking. And it’s so damned short-sighted! Unsupported autistics tend to break-down over time, if a child is not diagnosed by reaching secondary age things are likely to really hit the fan soon after. Secondary school is where the social and school demands are greater and differences can become more apparent. Mental health difficulties increase through lack of support and these children end up costing services more in the long run. If they are not diagnosed they will likely receive inappropriate mental health support and no recognition of the underlying cause of their difficulties. It is usually what is behind the ridiculous “Not Enough Traits for a Diagnosis” scenario. Short-term thinking helps no-one!
(5) Lack of expertise in autism is rife in CAMHS. Being legally qualified to assess and diagnose autism does not equal being automatically good at it. The worse they are, the more likely (1) is going to be a barrier to diagnosis. Also (4) probably feeds into (2) because stressed staff are sure to have an onward adverse effect on service users and quality of provision. If the service is not funding staff to have adequate autism-specific training and keeping up-to-date with latest knowledge, how can they claim to have the right expertise? Clinicians should also have the wherewithal to be proactive and take some individual responsibility for working towards their own clinical excellence. What seems to be the modus operandi at CAMHS is a quick training module in administering an ADOS-2 and a totally tick-box approach to assessment. That’s just not good enough. Our children are the future, what sort of future will they be if they suffer diagnostic failure and zero support?
(6) A professional with their own personal issues…yuk, saved until last, but not the least important by any means. Sadly, there are some very unbalanced and even deranged people in professional jobs! And you know what they say, people that distrust others so pathologically, are usually the most untrustworthy (it’s called projection). Professionals with mental ill-health, addictions, prejudices, personality disorders, disastrous upbringings that have made them unbalanced – you name it, they are not any more immune than the rest of the population. In fact rates of addiction are very high among doctors (and check out link no. 2 below, they took the job in the first place and aren’t taking a sabbatical whilst they are unfit to practice!). We’ve probably all encountered more than one doctor with a God complex, or a doctor who dislikes well-informed parents. I guess this aspect is the one that can sometimes be the hardest to do anything about, humans are prone to err. Sometimes people just take a dislike to someone no matter what their role is. If the person who dislikes you is a doctor assessing your child or your child’s teacher, it’s tough. A professional’s word is often seen as sacrosanct and how dare a mere parent challenge it! You can ask for an independent 2nd opinion if you feel diagnostic failure results from a clash with a clinician. There are always complaints processes that exist, even if they often end in a whitewash at least the problem is recorded. Ironically I’ve heard from more than a few parents who have been targeted by professionals after they raised complaints. Hell hath no fury like a professional scorned eh. So cover all your bases and collect evidence of your child’s difficulties.
One of the problems that can arise is being targeted falsely for MSBP/FII and if anything is going to derail a child being diagnosed that will. Collate your evidence, video your child’s behaviours if necessary, document what strategies you have tried and what has worked (especially with PDA strategies) and what has failed. If they push a parenting course, take it but say that whilst you are happy to go on the course if it will help your child, you wish your child concurrently on the waiting list for autism assessment because the Government states that early intervention is necessary and they have a duty of care. If it’s a teacher…you could always ask the school to move your child to another class if it’s possible. But where the issue is that they aren’t supporting the view of autistic behaviours in school for the assessment, school evidence is not the be-all-and-end-all and there is a wealth of official information on (1) out there which will counter that. If the attitude is from an EP, if you can afford it get a private EP assessment as evidence. You can do this for an autism assessment too. There are options, you don’t need to let bad behaviour from a professional be a complete barrier, no matter how difficult and stressful (and unfair on your child) it is. You can also report badly-behaving professionals to bodies such as the GMC, HCPC etc. if they are behaving negligently and/or you have good reason to suspect, or know, any unprofessional behaviour is due to any reason that impacts their functioning. Bodies such as Healthwatch record complaints and patterns of failings. The bottom line is, professionals like that should not be in the job!
…if you don’t believe a professional would behave badly in their job, here is some light reading for you (if the parent blame document wasn’t enough for you!)
So come on professionals ~ get your act together and stop with the disbelieving already! And remember folks…
It’s been known about for a while now, but still nothing is done about it. The diagnostic criteria for autism were all researched on only males with the condition. So why, we must ask, bearing in mind the recent revision of the DSM, did they not revise those criteria with this evidence in mind? The ICD is also currently under revision, no doubt the WHO will ignore this glaring anomaly too. Autism isn’t the only condition in which females present differently. To my surprise, recent research showed me that this is the case with ADD/ADHD and bipolar too (but then of course they are genetically related to autism). They say “it’s a man’s world” and in many ways it still is. Females are suppressed, ignored and mistreated in religion, culture, employment, so it’s not too much of a stretch to point out the misogyny present in the medical profession too. You can’t be autistic – you are a girl, just a hysterical/neurotic woman, mindset.
The NAS has information on autism in females, and research is out there highlighting that females are more able to mask their difficulties, more likely to be compliant, less likely to act out in the way males do, as well as having better compensatory abilities and yet so many females still struggle to get diagnosed with autism due to the stereotypical beliefs that prevail among clinicians. So many autistic females are misdiagnosed too, with disorders such as anorexia (anorexia rates are higher in autistic females so clearly the cause of anorexia is not being looked at adequately), BPD and generalised/social anxiety. Some research claims that females are genetically protected from autism and that this is why the rates are at least 4:1 for males to females. I dispute this, I personally believe there is no difference in the rates of autism between males and females, it’s just recognition that is the issue. In this research, it states: “Instead of focusing on specific male risk factors, our focus needs to change to understanding how the male and female brain differ and what that means for autism risk,” and “A lot of what we do in research and intervention are things we have learned from researching boys, and this needs to be addressed,” says Ami Klin, chief of autism and related disorders at the Marcus Autism Center at Emory University in Atlanta, Georgia. He points out that girls are often excluded from studies. There is also an interesting article in the SEN magazine here.
Here is a media article about how girls with autism are being failed and the gender bias that exists. So why, when there is so much evidence out there of this problem, are autistic girls being ignored? As a female parent on the autistic spectrum myself, with two autistic daughters, two of us faced much difficulty in obtaining diagnosis. The clinical expertise is just not there, and it astounds me that UK clinicians are not kept up-to-date with latest developments in autism research.
Girls are diagnosed later than boys when they do get diagnosed, often meaning years of struggling in the school system without support for their difficulties. The later you are diagnosed the more likely you are to suffer mental health difficulties. Females are so much less likely to be referred for assessment: http://www.examiner.com/article/girls-with-asd-suffering-silence “Although there has been a dramatic increase in the number of children diagnosed with autism spectrum disorders (ASD) over the past decade, statistics indicate that boys are being referred and identified in far greater numbers than girls (Attwood, 2006; Wagner, 2006). In fact, referrals for evaluation of boys are approximately ten times higher than for girls (Attwood, 2006).”
I wonder, how many times someone who suspects they are autistic, is assessed and not diagnosed (assuming correct diagnostic outcome). I would imagine the numbers are infinitesimally small. So would females be asking to be assessed without reason? I was once asked, having said I felt different from other people, how would I know that. That’s the weirdest question. You can’t really explain something like that you just know, from watching and listening to others, their views, experiences, interactions etc. that you are not like them.
The biggest problem for many autistic females is that they internalise their difficulties, they are passive. In the education system this means they are model pupils, they don’t disrupt the class and just fade into the background, so no problem – right? This is why so many autistic girls end up with anxiety, depression, anorexia, self-harming, school phobia. The more years you go undiagnosed, the harder it gets. By the time a girl hits secondary school the social expectations soar and the concurrent decline in their ability to cope becomes greater. Primary school is relatively easy. If your daughter doesn’t have a close clique of friends it’s easier to disguise as they are all running around playing randomly at that age, friendships can be fickle. But in secondary school, the playing subsides and it’s all hanging together in gangs gossiping and bantering, and someone with autism finds that extremely difficult, so their differences are highlighted meaning they become a target for bullies.
Lorna Wing described sub-types of Asperger’s: active-but-odd, passive, aloof and stilted. I once did a poll of Asperger’s females on a forum and so many said they fit the passive* sub-type. This would lead to the logical conclusion that there are many undiagnosed females out there. If the parent doesn’t realise their child’s traits could be autism and the school doesn’t pick up on it (parents often rely on schools to point out where their child is having difficulties and advise regarding referrals and interventions) then the child misses getting diagnosed. Boys on the spectrum will often be more aggressive and schools will then want something done about the disruption of their classes.
So why did the DSM ignore this issue? It’s bad enough that they removed Asperger’s as a diagnosis – even Autism Speaks published a study declaring that Asperger’s is a distinct form of autism, so overall more people will struggle to get diagnosed with ASC, but as females are already at a great disadvantage in having their condition recognised, this is compounded and the problem will not get resolved unless action is taken over the diagnostic criteria and training of clinicians. There are countries outside of the USA that use the DSM, including sometimes in the UK. The ironic thing is, that females with autism pass on the genetics to their children (I know others outside of my own family) and research has also identified the womb environment as contributing to autism, and yet females are tragically ignored.
Edited to add this link to fabulous paper which puts it so well: Invisible at the End of the Spectrum: Shadows, Residues, ‘BAP’, and the Female Asperger’s Experience
Thought for the day:
*Passive
Often amiable, gentle, and easily led. Those passive rather than aloof from infancy may fit AS. More likely than the aloof to have had a mainstream education, and their psych skill profiles are less uneven. Social approaches passively accepted (little response or show of feelings). Characteristic autistic egocentricity less obvious in this group than in others. Activities are limited and repetitive, but less so than other autistics. Can react with unexpected anger or distress. Recognition of their autism depends more on observing the absence of the social and creative aspects of normal development than the presence of positive abnormalities. The general amenability is an advantage in work, and they are reliable, but sometimes their passivity and naivete can cause great problems. If undiagnosed, parents and teachers may be disappointed they cannot keep a job at the level predicted from their schoolwork.
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