ASD kids being diagnosed with Attachment Disorder instead

[Cuddlepie]

Hi everyone,

I'm new here and I am wanting to know how common it is becoming for ASD children to be misdiagnosed with Attachment Disorder, and the mother blamed.

 

My son is 8 and has HFA. Before we got the diaganois a year ago, my son and I were sent to CAMHs by his school. I thought there was something wrong from an early age, but was mostly dismissed by professionals. My son was diagnosed with RAD by CAMHs without my consent, even though we have never neglected or abused our son and he is our biological child. I was actually suspected of having a form of MSBP. They said he was like this because I "wasn't emotional enough" and therefore didn't honor his emotions. I couldn't relate to it, yet I was so devastated I cannot express how much this hurt: to see my son flapping and spinning and screaming, and thinking: "that's all my fault?". None of the attachment things I did made any difference, and we had even practised "attachment parenting" since he was born (ie long term bf'ing, family bed etc). So I was at a loss of what to do, and refused the psychotherapy they tried to coax me to do (and thank God I did!) A year later, some specialists came to observe our son at school and insisted he needed a proper autism assessment. He was dx'd with autism after having the full asssessment. I'm happy to say that now he is thriving from the autism interventions. There is no way he has RAD: and he tells us he loves us at least once a day. He is a happy, secure child. I have started a blog about this, plus a more detailed version of my story; http://radfad.blogspot.com/ which I intend adding to in the coming weeks as I have amassed a huge amount of very interesting information over the past 2 years.

 

Being blamed like this really hurts, even after the vindication of the diagnosis. Since then I have been trying to find others who went through similar experiences, because I want to start a counter-movement against the increasingly prolific use of Attachment Disorder. When you analyse it, Attachment Disorder is just an attempt to reignite the Refrigerator Mother. And autism used to be an Attachment Disorder. The only difference between RAD and Aspergers syndrome is neglect and/or abuse, and now therapists are even discarding the abuse/neglect and going for more "subtle" pathologies in the mother. This extremely dangerous for both the child and the mother.

 

I have started a yahoo group to serve as both a meeting point and support group for parents who were misdiagnosed with RAD or its variations, yet their child really had autism, here;

 

http://groups.yahoo.com/group/momsforempowerment/?yguid=2842 06133

 

Anyone interested in being part of this group is most welcome.

 

Here is the blurb;

 

We are searching for anyone whose child was wrongly diagnosed with the latest fad diagnosis: "Attachment Disorder", when they were later found to have a developmental, genetic or neurological condition, ie autism, aspergers, PDD, or other. We are against the liberal use of Attachment Disorder and want to increase awareness about it. We question the hysteria and hype around Attachment Disorder and its tendency to pathologize motherhood, or, in the case of adoption, the child. We promote the empowerment of mothers, rather than the blame and disorientation that these fad diagnoses bring.

[lisac]

Hi Cuddlepie. 5 years ago when my son was 16 - His psychologist and psychiatrist together ( from the childrens team) said to me that ,as my son was low functioning he HAD to go to a residential service on leaving school at 19... When i challenged their 'suggestion' and said i didnt want him in residential care, the psychiatrist turned to me and said that i probably had an 'Attatchment Disorder'!!!!! , Im his mother for gods sake, what a load of bull. I was gobsmacked!! it would be quite funny if these people didnt get paid so much... what can you say . I have to add that in my experience the adult team are much better and 'human'.

[cmuir]

Hi

 

It's incredibly sad that when a child is being assessed that parents do seem to be automatically assessed also. I've openly said to CAMHS that I can understand why - particularly when a child exhibits complex or odd behaviours. Sadly, some so-called professionals don't seem to be able to get past that and diferentiate between a parent that is 'healthily' being proactive in trying to resolve issues as opposed to a bad parent who couldn't care less.

 

Caroline.

[Cuddlepie]

I have to add that in my experience the adult team are much better and 'human'.

 

I'm a mental health nurse, and that is exactly what I have found as well! I love the kids, but the people who work in those sections of mental health have no sense of humour and the atmosphere is always very serious and tense, as well as extremely cliquey.

[JsMum]

 

 

 

Hi, in Js early assessments 6-7yrs old and got diagnosed ADHD/ODD they said that J had an insecure attatchment to myself, at the time he was highly aggressive and extreamly challenging towards me, attacking me on a regular basis, so the cahms thought he didnt attatch very well to me.

 

 

Over the years J has many ASD traits and severe Social interaction and regularly having fights and aggression with children and it esculated with the aggression with myself that eventually I seeked private assessments who confirmed the ASD and SID, we then went throw our local authority to get it diagnosed on paper, that is when the local team came up with ASD Traits, Severe social and communication difficulties and Dyslexia and they also wanted to diagnose ATTATCHMENT DISORDER, like you I was deeply hurt when I discoverd it was a child who had been traumatised and abused and his needs not been met especially in the first 6 months of their lives, I took excellent care of J throw out his years though struggled on a daily basis with his eractic challenging behaviour.

 

I researched AD and had enough evidence to prove that I took good care of J, I couldnt believe I was now on a road to prove my worth as a mother when what we should of been doing was getting the correct diagnosis so we could best help him.

 

I had to provide reports and assessments that showed I had provided all of Js needs, if anything I over compensated in many of Js needs and he is now a little spoilt which Ive since rectified.

 

I am pleased to say that the team did NOT diagnose AD.

 

I do believe that the services are trying to lable AD in hope that the overall services do not have to provide long term services and provisions that should come with Autism and other developmental diagnosis.

 

I believe J hasnt got ODD either, never mind AD, what has been confirmed though that J has a multitude of overlapping diagnosis making him a very complex child and doesnt nessasarily tick every box in a set diagnosis he has many difficulties and challenges and its a number of combined disorders that he has.

 

J thankfully is now in a specialist school that cater for ASD and other development disorders.

 

JsMum

 

 

[Cuddlepie]

they also wanted to diagnose ATTATCHMENT DISORDER, like you I was deeply hurt when I discoverd it was a child who had been traumatised and abused and his needs not been met especially in the first 6 months of their lives, I took excellent care of J throw out his years though struggled on a daily basis with his eractic challenging behaviour.

 

I know exactly how you felt! It is the most confusing, shaming, frustrating and belittling thing they can do to a mother. Like you, I had struggled and done everything in my power to help my son, yet was getting nowhere. The "attachment disorder" diagnosis was like adding insult upon injury.

 

I researched AD and had enough evidence to prove that I took good care of J, I couldnt believe I was now on a road to prove my worth as a mother when what we should of been doing was getting the correct diagnosis so we could best help him.

 

I know .... isn't it disgusting?

 

I had to provide reports and assessments that showed I had provided all of Js needs, if anything I over compensated in many of Js needs and he is now a little spoilt which Ive since rectified.

 

Sounds like a 'witch' trial. The irony about us was that I had suspected autism in my son from an early age, so I spent hours upon hours with him, showing him how to play with dolls, and having him resist me saying; "dolls don't talk". I also spent hours teaching him about facial expressions and emotions. I was his speech therapist and his OT as well as his mother! So when we finally got sent to CAMHs they saw he could play with dolls imaginatively and could recognise emotions, so they still had all the other social impairments, so they diagnosed Attachment Disorder, saying that I wasn't emotional enough, probably because they couldn't find anything else. When in fact, my hard work had simply made their job harder to diagnose my son, as was confirmed by a proper autism diagnostician! What irony.

 

I am pleased to say that the team did NOT diagnose AD.

 

I'm glad you didn't get it written in his file, but it is bad enough to be put up for judgement like that.

 

I do believe that the services are trying to lable AD in hope that the overall services do not have to provide long term services and provisions that should come with Autism and other developmental diagnosis.

 

That's a possibility. I've put an entire post on my blog about why therapists are diagnosing AD rather than ASD that you might be intersted in. I've listed 10 reasons. The CAMHs I went to were all avid Freudians and Attachment Theory fans - in fact it had all the makings of a cult.

[stressedmumto2]

Sounds like a 'witch' trial. The irony about us was that I had suspected autism in my son from an early age, so I spent hours upon hours with him, showing him how to play with dolls, and having him resist me saying; "dolls don't talk". I also spent hours teaching him about facial expressions and emotions. I was his speech therapist and his OT as well as his mother! So when we finally got sent to CAMHs they saw he could play with dolls imaginatively and could recognise emotions, so they still had all the other social impairments, so they diagnosed Attachment Disorder, saying that I wasn't emotional enough, probably because they couldn't find anything else. When in fact, my hard work had simply made their job harder to diagnose my son, as was confirmed by a proper autism diagnostician! What irony.

 

Hi Cuddlepie what you have said there mirrors much of what happened with my son.

 

My son was first assessed and dx adhd at 4, he was still in nursery, he had many difficulties which all pointed to AS, he scored very high on the behaviour and socialisation scores, there was very high indicators of AS which were ignored because of his age. In primary school where things were more structured he managed really well until year 2 and the occasional settling back in after a holiday. In year 2 his behaviour become more and more confusing to all the professionals, the behaviour I had always had at home which nobody believed was how he was presenting on entering school, he was soon to be labeled with ODD.

 

From a very young age we had a specialist behaviour health visitor, she would come to the home and take videos of us playing with my son and interacting with him and this included family and friends too, this work was to see how we responded to him and teach us ways to respond to him and to see how he responded to us and other people, he had no idea how to play at this stage!! from this work she helped us to develop ways to play with him which was a huge amount of repeating the same thing over and over and massively exaggerating the play, it was hard work but he did eventually start to play although his play is very different to that of how my daughter will play. We also done work on emotions/anger etc At the end of our sessions the HV told me of the records she suspected AS, she told me she couldn't put it on paper as it was out of her re-mit with the work she was doing with us, we were the first family in our area that she had done this video work with. I do feel from the work we had done at that time and because it was being used across all settings it did teach my son skills which now do hide his ASD, or not necessarily hide it but make it not very noticeable, which is why it has been hard to get a diagnosis for him.

 

Me and my son were very close and this was even used against us once when our local HV who had known him from a baby had said to a social worker that myself and my son were very close, perhaps to close sometimes and that's why I get the brunt of his behaviour. The health visitor was shocked when she knew that what she had said had been taken out of context and I was shocked too as it felt like the s/w was insinuating something wrong was going on between us!!. Like j's mum this health visitor had said I had over-compensated in my son's needs, that I was a very good and caring mother who was very patient, lol (not so much now)!!

 

The only professionals who have tried to go down the AD route with us have mainly been Social Services who do not understand ASD and because we are dealt with by the team that do not deal with families with children with disabilities it is easy for them to jump to conclusions I think. They see abuse and neglect a lot and for a child like my son his behaviours could present as that of an abused child if you don't understand or know him.

 

My son refuses to go to school sometimes, mostly after a holiday or at the usual start time-happier to go later in the day, refuses to go to his dad-that's mostly now cos he wants to play with friends, often refuses to go out with respite worker-again cos he wants to play with friends so it would look like he had an attachment to me it has taken years to get other people to understand that it's often transition difficulties that make him anxious about going to other places or because he wants to play with friends, but there too have been times when I have left him at home with respite workers whom he has not know and he has been fine, when he has gone out with workers he has not known and times when he has stayed overnight with family and friends and it has been a case of having to use those times to show that it is not an attachment to me that is preventing him from going off with others or going to school, if he was so attached to me would he go off with a complete stranger or play out with friends?

 

The AD label is a label that I think is going to get used more and more often and for many unfortunate families who may not have the internet to research it will probably not challenge it. I was shocked when I read it that I had to challenge it, my son's difficulties were not caused by us parents, although at times my son was very hard work we were and still are now extremely close, his father and I have separated now and he sees his dad weekly, his dad will say how he often felt rejected even when we were together as my son wanted me most of the time, my son was certainly not neglected/abused/didn't have his emotional needs met or unattached to myself especially in the early years when he was the only child and I spent most of my time seeing to his needs, playing with him, taking him out to parks, play areas beaches etc. I remember both my babies as baby's and spending hours upon hours moody coddling them as I believe many of us parents do!!

 

The scary thing is as you say now how some professionals and therapists are discarding the abuse/neglect and going for more "subtle" pathologies in the mother or even in the mothers upbringing. So many times I have come across questioning like are you depressed, do you get depressed, do you have to take medication, how do you respond to your child when you are down etc. It's making parents scared to go to their gp's for support for fear of being blamed for their child's behaviour or odd mannerism's. I too really feel for families who may have had a difficult upbringing themselves but who are striving to be different parents for their children and are told that their child has difficulties because of how they were brought up. Something needs to change before families are destroyed by not getting the right support.

 

I wnat to wish you lots of luck with your group

[lisac]

I'm a mental health nurse, and that is exactly what I have found as well! I love the kids, but the people who work in those sections of mental health have no sense of humour and the atmosphere is always very serious and tense, as well as extremely cliquey.

 

Yes, they were always such a sour bunch of professionals..( probably didnt even have children of their own). Its not our fault that they lack communication' skills themselves. They need to be reminded that they are talking to Mothers, and creating atmospheres is NOT the way forward. Sometimes all we need is a bit of reassurance. I always sensed that they were there to judge us rather than motivate and help us, despite what they would say. In my experience the Adult Team have been far more respectful, understanding and sensitive, and seem genuinely to want to help .

[Cuddlepie]

Hi Stressedmumto2,

Thanks for telling me your story. You can't win with these people; no matter what you do, they will turn it into some pathology, even if you just love your child; they will say you're "over loving" or some other ridiculous thing.

 

The AD label is a label that I think is going to get used more and more often and for many unfortunate families who may not have the internet to research it will probably not challenge it. I was shocked when I read it that I had to challenge it, my son's difficulties were not caused by us parents

 

It's terrible what is happening, and we have to do something to stop it, but we need numbers. If this was happening in America, there'd be a war! Please join my group, even if you just lurk.

 

http://groups.yahoo.com/group/momsforempowerment/?yguid=2842

[stressedmumto2]

OMG just had a look at AD on some of the other sites, compared with when I looked at it must of been over a year or so ago the way it was once perceived to how it is now is definatly changing and is most worrying.

 

Taken from another site.......

Many of their symptoms are similar to children with Attention Deficit Hyperactivity Disorder (ADHD) and there is active debate about the relationship, overlap and diagnostic distinctions between children with attachment disorder who have a history of maltreatment and children with ADHD.

 

Many professional now believe that ADHD is being over-diagnosed and that many of these children actually have attachment disorder.

 

 

From what I have read on this site it really does worry me.

[JsMum]

OMG just had a look at AD on some of the other sites, compared with when I looked at it must of been over a year or so ago the way it was once perceived to how it is now is definatly changing and is most worrying.

 

Taken from another site.......

Many of their symptoms are similar to children with Attention Deficit Hyperactivity Disorder (ADHD) and there is active debate about the relationship, overlap and diagnostic distinctions between children with attachment disorder who have a history of maltreatment and children with ADHD.

 

Many professional now believe that ADHD is being over-diagnosed and that many of these children actually have attachment disorder.

 

 

From what I have read on this site it really does worry me.

 

 

I wonder if the reason why the proffessionals want to come away from ADHD is because the work parents and other rights representatives have worked so hard to gain more recognision and understanding of the condition and its leading to more rights been granted like statements in education, specialist provison and beginning to see that ADHD like Autism is a life long need and its costing money, also many children are given ADHD lable and not long after get identified ASD so maybe by swaying away from ADHD they can save money and prevent further identification of future Autistic Children/Adults.

 

It seems a lot of the symptoms in AD are also symptoms in many Developmental Disorders so by diagnosis AD you prevent ASDs, ADHD, Dyslexia, Dyspraxia, been identified as a need, much cheaper to diagnose AD.

 

JsMum

 

 

 

[Karen A]

 

 

Hi.I am a very infrequent visitor here now.However as the parent of a child who in the last two years has had an AD dx ,an AS dx and who currently has some of the best professionals in the country split regarding the eventual dx I feel I have a valid opinion.People who have been around a while are aware that I am very open that there were reasons why Ben might have an AD dx.I am very open about having had mental health problems when he was at a vulnerable age and have nothing to hide.It is widely recognised that the most loving mothers can have post-natal depression....although I did not.It is also recognised that PND can impact the emotional development of infants when the mum does not recieve adaequate support.One of the ways to address this issue is for there to be less stigma regarding those mums who do need support.

Vocal opinions on an extremely complex issue do nothing to reduce stigma.

 

I think it is worth pointing out that children with an AD dx may well be offered intensive CAMHS psychotherapy long term which is extremely costly.I have yet to come across anyone on the Forum recieving weekly support on a long term basis.Most people here with an ASD dx receive no or minimal CAMHS input.Dad and myself and Ben receive weekly input and have done for two years.

So whatever the reasons for any possible increase in AD dx the avoidance of CAMHS spending on ASD is unlikely to be one.

 

One day we may find that Ben does not have AS because the CAMHS psychotherapists and psychiatrists who are extremely professional,sensitive and dedicated individuals may enable Ben to be an adult whos AS does not have a significant impact on his life....which would be great news.The people here who knew me when I was around more also know that Ben recieves ongoing input from ASD outreach and I also have an ongoing interest in AS issues....so I am not some parent in denial.

 

As I said the issues are very complex .Karen.

 

 

 

[coolblue]

Hi. Brief intro first - I joined this site some time ago but have hardly ever posted. Mum to ds (10) with recent dx of ASD and dd (14) with chronic post-viral syndrome (similar to chronic fatigue syndrome), but no diagnosis.

 

Really shocked by what's been described in this thread.

 

I'm becoming increasingly concerned about the tendency to attribute all children's behavioural problems to parenting. It's just as bad as trying to 'medicalise' everything. Diagnosing so-called mental disorders by matching symptoms across patients and sticking a label on them was forgiveable when we didn't know much about DNA or how the brain worked, but there's no excuse for such a system now. Most of us have abilities or disabilities which depend on our genetic make-up, the way we're brought up, and the situation we're in at present, in roughly equal proportions (a bit more on the genetic side, actually) so why developmental problems can't be viewed this way, I don't know. No, I do know. It's because of ignorance. I would be prepared to bet that most of the proponents of Attachment Disorders know very little about genetics or neurology.

 

Parents, who are unlikely to be able to defend themselves against false accusations of abuse or poor parenting are an easy target. I note, for example, that the proposed NICE guidelines about when to suspect maltreatment of children hardly mention school as a possible source of maltreatment, in spite of the fact that the NSPCC says 30% of children report being bullied at school, and SEN support (affecting up to 25% of children in school) has been described by a House of Commons Select Committee as not fit for purpose. Not to mention the distress caused by the NHS failing to diagnose developmental problems correctly.

[Mumble]

I've read this several times - I think there are some interesting and important issues raised, but I do think it is important to consider the wider context (I'm not arguing against anyone individually but I do think everyone at times falls into the trap of seeing their own situation removed from its own context and the contexts within which the situations operate).

 

Yes, they were always such a sour bunch of professionals..( probably didnt even have children of their own).

To clarify before I make my point, I am not a parent and I hope people will not judge me as therefore not capable of knowing because of this. In the same way that I can't claim to know what autism is like for everyone because I am autistic I don't think that being a parent (or not) qualifies you to know. I came up against the same argument as a teacher and all is does is place an unnecessary hurdle in the way of people doing their jobs and of working collaboratively with parents.

 

So ... I do understand how it may feel to be wrongly accused of abuse, but this experience must be understood within the wider issues of child protection. It must be preferable for a concern to be investigated and rejected rather than for a genuine case of abuse to go unidentified perhaps with terrible consequences. It is a fact that particular behavioural characteristics (as outwardly manifested) seen in individuals on the autistic spectrum are identical to those of a child being abused. Looking at the displayed characteristics (and such observation is where concerns (of anything) are often first raised tells nothing about the underlying cause and it must be seen as in the best interests of the child to rule out the possibility of abuse (not necessarily from the parents and not that the parents are necessarily aware of). The genetic argument is important but a)genetics do not account for everything and b)it is quite possible that a child is both abused and on the autistic spectrum.

 

There will always be 'diagnoses of the day' and perhaps AD is one of these (I personally believe AS is also like this currently). It must be remembered that ASDs are difficult to accurately diagnose and what we don't want is a situation where they are used freely and inaccurately so we potentially get the opposite of the situation the OP describes. I understand how frustrating and difficult it can be to live without the 'correct' diagnosis as this happened in my case but I would rather wait longer for the correct diagnosis than risk an inaccurate diagnosis because professionals are put in a position where they are attacked for making enquiries/considering alternative dxs.

 

[Cuddlepie]

People who have been around a while are aware that I am very open that there were reasons why Ben might have an AD dx.I am very open about having had mental health problems when he was at a vulnerable age and have nothing to hide.It is widely recognised that the most loving mothers can have post-natal depression....although I did not.It is also recognised that PND can impact the emotional development of infants when the mum does not recieve adaequate

 

According to the official DSM IV criteria for RAD, the child must not have ASD. The American Psychiatric Association calls for great care to be taken when diagnosing RAD, to rule out ASD. One of reasons you can't have both is because the same area of the brain is affected either from a neurlogical disorder before or soon after birth, OR extreme social deprivation. In this post http://radfad.blogspot.com/2008/12/closer-...er-part_23.html on my blog, I argue that RAD is only possible these two ways. With PND or even abuse, the typical child still experiences intersubjectivity with yourself and with others, even if it's not perfect. See also the www.quackwatch.org link about attachment disorder, and the fake criteria that a lot of professionals have been conned by.

 

There is a lot more info, and arguments why AD cannot occur so readily as some believe, on my blog here; http://radfad.blogspot.com I welcome any challenges to anything I have written.

[Cuddlepie]

so why developmental problems can't be viewed this way, I don't know. No, I do know. It's because of ignorance. I would be prepared to bet that most of the proponents of Attachment Disorders know very little about genetics or neurology.

 

Exactly, Coolblue.

 

Parents, who are unlikely to be able to defend themselves against false accusations of abuse or poor parenting are an easy target.

 

And this is really scary. When I was psychoanalysed by the two therapists at CAMHs, both firing questions at me at the same time, I realised that if I had not had a secure and happy childhood, with no divorces or traumas, my son would never have received the correct diagnosis, and he would not be thriving as he is today because of autism interventions. Instead, I would not only have to deal with my son's extreme behaviours on a daily basis, but also the trauma of having to go through psychotherapy on a weekly basis. When the therapists couldn't find anything in my past, they started looking for more "subtle" pathologies, ie like; when they asked me how my father was to me, I said he always treated me like a princess, they said: "what about when you didn't feel like being a princess?" I replied: "I was always a princess ... I still am!" LOL. They also repeated the question: "give us 4 words that describe your mother" about 4 times over. They were trying to get me to say that my mother was neglectful or didn't love me. But my parents DID love me! They couldn't believe it. Meanwhile, while all this Freudian rubbish was going on, my son was suffering, hiding under desks at school, biting people etc. You can read the full story on my blog.

 

As time went on I realised that they were almost trying to get me to confess to a crime I didn't commit, and that as my anxiety levels increased from their increasingly intimidating tactics to "break me", I could well have confessed to something I never did. Scary thought.

 

I note, for example, that the proposed NICE guidelines about when to suspect maltreatment of children hardly mention school as a possible source of maltreatment, in spite of the fact that the NSPCC says 30% of children report being bullied at school, and SEN support (affecting up to 25% of children in school) has been described by a House of Commons Select Committee as not fit for purpose. Not to mention the distress caused by the NHS failing to diagnose developmental problems correctly.

 

That is an excellent point! Also, Frank Furedi in his brilliant book Paranoid Parenting goes into the reasons why parents are blamed for everything http://www.amazon.com/Paranoid-Parenting-I...2282&sr=8-1

Edited December 31, 2008 by Cuddlepie

[coolblue]

So ... I do understand how it may feel to be wrongly accused of abuse, but this experience must be understood within the wider issues of child protection. It must be preferable for a concern to be investigated and rejected rather than for a genuine case of abuse to go unidentified perhaps with terrible consequences. It is a fact that particular behavioural characteristics (as outwardly manifested) seen in individuals on the autistic spectrum are identical to those of a child being abused. Looking at the displayed characteristics (and such observation is where concerns (of anything) are often first raised tells nothing about the underlying cause and it must be seen as in the best interests of the child to rule out the possibility of abuse (not necessarily from the parents and not that the parents are necessarily aware of). The genetic argument is important but a)genetics do not account for everything and b)it is quite possible that a child is both abused and on the autistic spectrum.

 

I agree, Mumble, that children who are being abused, and children with attachment problems can show unusual behaviours. I also agree that possible abuse or dysfunctional relationships need to be investigated. However, in my experience, these are often not investigated in a systematic way by people who are well-qualified to do so. They are often snap judgements made by professionals under pressure and qualified in one relevant area but not in others, after observing a child they've never seen before for 30 minutes in a context unfamiliar to the child.

 

These are hugely complex issues, as you will be aware. What, for example, constitutes 'abuse', 'maltreatment', 'significant harm' or 'disordered attachments' ? Some people believe that smacking, per se, or refusing to force a kicking and screaming child into school puts the child at risk of long-term damage. I would fundamentally disagree. Also, as you point out, times change. When I was a child a parent who did NOT smack was seen as not acting in their child's best interests and school-refusal would cause people to start looking at the school, not the parent. Anyone familiar with developmental disorders will not start looking at abuse or dysfunctionality in the family first.

 

There will always be 'diagnoses of the day' and perhaps AD is one of these (I personally believe AS is also like this currently). It must be remembered that ASDs are difficult to accurately diagnose and what we don't want is a situation where they are used freely and inaccurately so we potentially get the opposite of the situation the OP describes. I understand how frustrating and difficult it can be to live without the 'correct' diagnosis as this happened in my case but I would rather wait longer for the correct diagnosis than risk an inaccurate diagnosis because professionals are put in a position where they are attacked for making enquiries/considering alternative dxs.

 

I completely agree. Unfortunately, human beings, even very well-qualified, intelligent human beings, like to keep things simple. Keeping things simple is something our brains do without so much as a by-your-leave, to reduce cognitive loading. Thinking uses up an awful lot of energy. It is so easy to plump for an explanation which supports our preferred model and to completely overlook the fact that the evidence also fits 20 other possible explanations. We need to be on our guard against this.

 

Take Kanner, for example. In his first paper, he carefully records details of the children's relatives and family backgrounds. His discussion shows that he is undecided as to whether autism has origins in nature or nurture (inherited or due to upbringing). A few years later he opted for the nurture explanation, even though there was no more evidence to support this view than there was for the genetic explanation. As a scientist, he should have stayed open-minded IMO, as should a lot of people who are under pressure to make a diagnosis or attribute a cause before they've had time to consider all the evidence. And they should always be qualified to consider all the evidence.

[lisac]

Cuddlepie, I have just read your blog from start to finish, and I am shocked and disgusted at what CAMHS has put you and your son through. My god, if anyone deserves sueing they do, if only..

I had something similar but on a lesser scale that was absolutely dreadful so I know first hand how awful these people can be. Thank god we are strong .

[lisac]

Cuddlepie, did you ever get an apology ?

[JsMum]

In the time J has been under CAHMS since he was five and even though many of the psychiatrists he saw agreed J had complex needs and he desprately needed therapy there wasnt any as there was no funding, last year J went on the waiting list to recieve play therapy, but now he is in a specialist school he can not obtain it.

 

I understand others feel up most respect for the cahms but sadly I feel let down by many of the services to a point of complaint proceedures, not everyone gets the right provisions, J certainly is in great need for therapy, a private psychotherapist who saw J for a five week intensive course could not believe how many services where on board but nothing was happening.

 

We recieved a parenting course for around 6 weeks and her reports contridict the psychaitrist who said J has an insecure attatchment to myself, and they were made at the same time.

 

Mental health in todays adults is 1 in 4 so that is a high percentage of which will be a parent, gaurdian, grandparent, but it doesnt mean that there is an automatic tick for a child to have AD because the parent/GP/Gaurdian have MHDs.

 

J has a very good psychiatrist now and he has regularly supported us, even supported Js specialist school and praised me for my efforts I put into ensuring J has the right help so I know there is good doctors there, but in all the years he has been with them he hasnt recieved any therapies at all with in both health and social services.

 

Its always been Medication and parenting courses, no therapy.

 

J has recieved respite care with socail services and placed in foster parents, if he had of had a AD diagnosis, I know other proffessionals who didnt know his background would of jumped to their own conclusions, I know for sure if he had of got a diagnosis of AD there was no future pyschotherapy, there isnt any in our area.

 

Js needs are high enough to grant psychotherapy/art therapy already AD or Not.

 

JsMum

 

Edited December 31, 2008 by JsMum

[jo jones]

omg please tell me that they aint gonna say this to me???? i took little one back to o/t last week, she wanted him back cos his behaviour has got really severe with other things aswell,,anyway she wanted to do the full sensory profile this time,,,ok fine cos atleast im getting sumwhere,,she kept saying that he is really anxious and seems unhappy?????????????? but kept referring to my history of depression??at the minute we are finding it hard cos behavioural stuff and obsessions are much worse and have been getting worse for the last year,,,she then asked me if i thought i had been going through a slight nervous breakdown???i did tell her then that i am finding him difficult but not enough to go back on my medication??,,she then said well if u go back on it then u will be happy and he will be less anxious???i felt awful coming from there sooo guilty thinkin is it my fault???? but then thought me going back on my meds aint gonna take his sensory probs away isit???,,cos she did agree that his sensory profile has changed and his isnt coping with things that he would before???,,she also said she does not think he has asd,,just sensory dysfunction??? i have to go back to camhs in 2 weeks wiv him and his behavioural therapist is comin to see us nxt week,,,dunno what to think anymore,,camhs team didnt believe that my angelic child whom they see turns into someone quite different at home!!!!!!!!!!!!!! advice appreciated pleas thanx jo xxxxxxxxxxxxx

[Cuddlepie]

Cuddlepie, did you ever get an apology ?

 

I have taken my case to the Chief Psychiatrist and I am pursuing from CAMHs an apology, the case-notes to have all the false and defamatory information erased, better ASD education for CAMHs, and an investigation into their overly-liberal "attachment disorder".

 

So far all I have received is an apology from the psychiatrist for if she "said anything that upset me" . Not what she did and didn't do. Interestingly, in the "apology" letter she expressed a disagreement of the ASD diagnosis (even though it was the full ADOs assessment with the speech therapist, diagnositician and paediatrician over two weeks of intense testing, and pretty much irrefutable), BUT the same letter was copied and put into my son's case notes with that paragraph missing .... possibly because she wants to cover up her initial diagnostic error. I pointed this out to the CP. So we're waiting on his investigation now.

Edited December 31, 2008 by Cuddlepie

[Cuddlepie]

Its always been Medication and parenting courses, no therapy.

 

Parenting courses for ASD? Don't they understand that conventional methods do NOT work for ASD, and this is well known. CAMHs desperately needs autism training. And our ASD kids need autism interventions, not "parenting". Sheesh!

 

Like us, you will probably be best to learn a therapy yourself and do it with your son. We're doing RDI with ours (Relationship Development Intervention). It's expensive, but if you get their DVD and books you can do some yourself. Scerts is another similar one. Good luck!

Edited December 31, 2008 by Cuddlepie

[Cuddlepie]

advice appreciated pleas

 

I would quit CAMHs and find the best private paediatrician you can - especially one who specialises in ASD. I live in Australia and the systems sound very similar, ie we have CAMHs etc here. But an ASD diagnosis is quite an intense process with three specialists who see the child separately and all three have to agree. I would contact an autism association in your area for advice.

 

Also, read Paranoid Parenting by Frank Furedi. It will totally put your mind at peace PLUS give you your power back again. You will know more than CAMHs after reading this book

[JsMum]

Parenting courses for ASD? Don't they understand that conventional methods do NOT work for ASD, and this is well known. CAMHs desperately needs autism training. And our ASD kids need autism interventions, not "parenting". Sheesh!

 

Like us, you will probably be best to learn a therapy yourself and do it with your son. We're doing RDI with ours (Relationship Development Intervention). It's expensive, but if you get their DVD and books you can do some yourself. Scerts is another similar one. Good luck!

 

Js only got an Official Dx Of ADHD/ODD Dyslexia, Anxiety, severe social interaction difficulties, severe impairments of communication difficulties and ASD traits and sensory intregration difficulties, no official Autism/HFA label, though he ticks a lot of boxes in Autism he doesnt tick quite enough for an offical diagnosis even though the presant Pyschiatrist, Neorologist, speech and language and other proffessionals do feel he is on the Autistic Spectrum, hence he has a complex needs label.

 

I have actually enjoyed the parenting programmes, especially the nurturing programme, the tutors really supported me and helped me modify the programme for a child with special needs as the leader had a relative with Dyspraxia and understood similair difficulties.

 

Ive just finished a teenager parenting course, that was really enlightening, and I did actually learn a few things too, adolencence scares the Socks of me, so it was good to face the fears, Im now learning parenting styles for Teenagers and modifying them to meet Js individual needs.

 

I have attended a couple of special needs programmes since and learning all the time as Im not a perfect parent, and still get it wrong unitentionally, though not neglfully or abusively, just normal mistakes.

 

I am going to be doing some more courses soon, especially conflict resolution that are designed for parents with challenging children, carers get a discount.

 

Ive got nothing against parenting courses as such, I met many parents with children with similair problems and oddly many had special needs too.

 

JsMum

 

 

[Karen A]

Parenting courses for ASD? Don't they understand that conventional methods do NOT work for ASD, and this is well known. CAMHs desperately needs autism training. And our ASD kids need autism interventions, not "parenting". Sheesh!

 

Like us, you will probably be best to learn a therapy yourself and do it with your son. We're doing RDI with ours (Relationship Development Intervention). It's expensive, but if you get their DVD and books you can do some yourself. Scerts is another similar one. Good luck!

 

Hi.I have not come across RDI .I am in the UK.

I did a quick google but have not been able to obtain much information.It appears that it is difficult to obtain much information without buying books etc or subscribing to a course.It appears that there have not been any independent research studies demonstrating the effectiveness of the intervention...as far as I could gather .However as it appears that the programme is based in Australia perhaps you have more information.

Forum users in the UK have access to various forms of therapy usually via the education system but RDI is not one in common use here I think.I am open to correction if anyone else has come across it. Karen.

 

[lisac]

I've read this several times - I think there are some interesting and important issues raised, but I do think it is important to consider the wider context (I'm not arguing against anyone individually but I do think everyone at times falls into the trap of seeing their own situation removed from its own context and the contexts within which the situations operate).

 

 

To clarify before I make my point, I am not a parent and I hope people will not judge me as therefore not capable of knowing because of this. In the same way that I can't claim to know what autism is like for everyone because I am autistic I don't think that being a parent (or not) qualifies you to know. I came up against the same argument as a teacher and all is does is place an unnecessary hurdle in the way of people doing their jobs and of working collaboratively with parents.

 

So ... I do understand how it may feel to be wrongly accused of abuse, but this experience must be understood within the wider issues of child protection. It must be preferable for a concern to be investigated and rejected rather than for a genuine case of abuse to go unidentified perhaps with terrible consequences. It is a fact that particular behavioural characteristics (as outwardly manifested) seen in individuals on the autistic spectrum are identical to those of a child being abused. Looking at the displayed characteristics (and such observation is where concerns (of anything) are often first raised tells nothing about the underlying cause and it must be seen as in the best interests of the child to rule out the possibility of abuse (not necessarily from the parents and not that the parents are necessarily aware of). The genetic argument is important but a)genetics do not account for everything and b)it is quite possible that a child is both abused and on the autistic spectrum.

 

There will always be 'diagnoses of the day' and perhaps AD is one of these (I personally believe AS is also like this currently). It must be remembered that ASDs are difficult to accurately diagnose and what we don't want is a situation where they are used freely and inaccurately so we potentially get the opposite of the situation the OP describes. I understand how frustrating and difficult it can be to live without the 'correct' diagnosis as this happened in my case but I would rather wait longer for the correct diagnosis than risk an inaccurate diagnosis because professionals are put in a position where they are attacked for making enquiries/considering alternative dxs.

Hi Mumble, parents always appreciate good proffesionals, we need more of them. Have you read CuddlePies blog?

However, if i wanted to learn to cycle i wouldnt ask someone who had never cycled before.

Yet we are expected to take 'parenting advice' from those who arent parents. So maybe the question we should ask before the camhs professionals start taking apart our lives is, are you a parent yourself? Surely this is a fair question

 

[StudentTeacher]

I am currently researching a case study of a year 2 boy. I have to look at the basic facts of his behaviour and decide what to further research based upon what I think is the key problem.

 

Having carefully researched and reading many balanced (not biased) academic articles (not forums based on opinion) it is obvious that symptoms of ASD and AD mirror each other.

 

I want to carefully point out to any of you who have had your child wrongly diagnosed, that it is quite an easy mistake to make. However, there is much evidence out there that goes some way to showing that it isn't just children who are adopted or who have been neglected in their infancy. There are also many different strands of AD, in the same way that there are many varying scales of ASD - part of what makes it so difficult to assess children.

 

 

For me, my case study is really very tricky, and I cannot begin to imagine how difficult it would be to formally diagnose him. He is disruptive, aggressive, destructive, and hates limits being put upon his behaviour. These are things that can be found in both children with ASD and AD.

 

I guess what I am trying to say, is that I think people need to realise just how difficult it can be to get a diagnosis correct. Perhaps the reason why paediatric staff are more 'uptight' is because there is a huge pressure to get these conditions diagnosed as early as possible - the younger, the better.

 

Also, AD is not the 'newest fad' diagnosis. It has been around as a theory and diagnosis for just as long as ASD.

[smileyK]

my mother had PND for yrs struggled to form a secure attachment she nearly had nervous breakdown was difficult emotionally unstable choatic busy mad crazy family home not that we didnt have happy times but my mum used have anger issies

[Lyndalou]

I am currently researching a case study of a year 2 boy. I have to look at the basic facts of his behaviour and decide what to further research based upon what I think is the key problem.

 

Having carefully researched and reading many balanced (not biased) academic articles (not forums based on opinion) it is obvious that symptoms of ASD and AD mirror each other.

 

I want to carefully point out to any of you who have had your child wrongly diagnosed, that it is quite an easy mistake to make. However, there is much evidence out there that goes some way to showing that it isn't just children who are adopted or who have been neglected in their infancy. There are also many different strands of AD, in the same way that there are many varying scales of ASD - part of what makes it so difficult to assess children.

 

 

For me, my case study is really very tricky, and I cannot begin to imagine how difficult it would be to formally diagnose him. He is disruptive, aggressive, destructive, and hates limits being put upon his behaviour. These are things that can be found in both children with ASD and AD.

 

I guess what I am trying to say, is that I think people need to realise just how difficult it can be to get a diagnosis correct. Perhaps the reason why paediatric staff are more 'uptight' is because there is a huge pressure to get these conditions diagnosed as early as possible - the younger, the better.

 

Also, AD is not the 'newest fad' diagnosis. It has been around as a theory and diagnosis for just as long as ASD.

 

Wouldn't all the other accompanying symptoms present in ASD like sensory problems, obsessions, speech difficulties/anomalies, need for routine and repetitive behaviours differentiate between the two?

[wotanerd]

Hi there fellow members.

I am new to theforum, and was lead to it byseeing the post about mis diagnosis.

About me - a mum of 3, my son has Asperger diagnosis since 6(now 15), and my eldest daughter has just been dxed with Adhd. The little one is fairly NT, we think.

I also happen to work in CAMHS.

Hving got thedrift of some posts, i do have alot of sympathy with the ones who feel blamed/judged fotheir child's behaviour. I have sat listening to experienced professionals talk quite judgementally about parents.

One even suggested that those seeking ADHD dx want DLA.

(Quite a tired, non evidence- based opinion and v. unprofessional).You probably won't be surprised that i don't confide in her or any of my colleagues, as there is a dominant group led by psychology, who refuse to see anything beyond attachment, when faced with ?asd/adhd.

Also the ones WITH children are as judgemental, smetimes worse.

I do get that a difficulty with parent/child relationship can cause complexity,BUT to label/dx with Attachment Disorder is clumsy and potentially damaging for a child, who then has to carry it around for life, based on s

purious evidence and at times, an opinion from someone who is biased against 'medical' diagnosis.

When my daughter was dxed, she was relieved, and my son has an understanding of his difficulties, especially at school.They were dxed by very experienced psychiatrists.

My advice for people who think theirchild has ASD(or other), is to ask what the professional background of the clinician is, whay experience they have in ASD, or related condition/formulating or dxing.

Finally, most people have some issues with our parenting, and some have had mental health problems, CAMHS professionals included -but some sit in judgement on others who are just being honest and asking for help.

By the way, I do have a laugh with people i see, and can't be doing with po-faced tense atmospheres.

[Sally44]

Thanks for the post and the important advice to ask what the background and specialism is of any professional you are referred to.

 

My son has a diagnosis of ASD, and other diagnosis including OCD.

 

The OCD side is causing us more problems than ASD, especially with school attendance etc. SS became involved and ruled that his OCD behaviours were due to our neglect. We also had MSBP mentioned, until school pointed out that my son admitted to doing certain things and that being ASD he would not have the ability to lie to try to protect family members.

 

SS are now just about out of the picture. But their approach to how they assess and write reports is so bizarre and not the way a report would be written by medical staff, that I would seriously avoid getting them involved ever again.

 

CAMHS are now on board. But again I am not sure what advice/support/therapy they will provide for his OCD. Especially since it is in school where he is not receiving the level of support he needs.

 

At one point SS said that it may benefit our autistic son to be fostered out! And at his school they had a child psychotherapist who said he did not believe my son had OCD and that his behaviours were due to him not having a stable adult support system within the home. These opinions were totally the opposite of the advice we had from CAMHS Psychiatrist and Clinical Psychologists [both who had expertise in ASD and OCD].

 

Our child was put on child protection for nearly 2 years, with all the added stress that caused. We are still picking up the pieces of that.

[wotanerd]

Hi

As far as OCD treatment goes, and depending on where your child is on the spectrum, there is CBT available in some places. CBT with OCD/asd combined is v. specialist as you probably know, but worth researching if your son would engage with it. I guess OCD is also on a spectrum and is driven by anxiety.There are books available on CBT with children on the spectrum.

Hope that helps.

[Mihaela]

Educational psychologists, social workers, paediatricians, teachers, child psychiatrists, etc. are notorious for being judgmental, and the parent-blaming culture is still very much with us - just as it was in the 1950s - although nowadays, it's more subtle, sophisticated and secretive. I have no respect for a system that treats intelligent, caring parents as dysfunctional inadequates.

 

When a parent suspects autism, it's absolutely crucial that we insist upon a psychiatrist who specialises in autism and who has kept up with the latest research. Too many seem to be oblivious to the female AS profile, and there's a desperate need to take account of it when diagnosing. Rigidly following the diagnostic criteria of the ICD-10 or DSM5 not only shows that a professional is afraid of using his/her discretion and common sense, but it also shows up the inadequacy and subjectiveness of the current criteria. Far too often, girls and women are misdiagnosed - which can cause far more harm than good (boys and men who show the female traits, also get a raw deal). There's no point in diagnosing, say, anxiety and depression, without also diagnosing the root cause - autism. If the parents or teachers, through ignorance, don't even suspect autism, then the professionals aren't likely to even look for it.

Diagnosing autistic children with 'attachment disorder' may well be very convenient and expedient for all the professional involved (a short-term fix), however, it is lazy, devious, deceitful and highly unprofessional - and can condemn that child to a lifetime of difficulties.

Edited February 16, 2015 by Mihaela

[Sally44]

I thought that professionals could not give a dual diagnosis of attachment disorder and ASD?? That is why a wrong diagnosis can be so potentially harmful, because once you are going down the path of a diagnosis of Attachment Disorder you are not meeting any ASD specific professionals and ASD is not even going to be investigated.

 

It is very hard for parents to be dealing with a diagnosis, whilst also having to learn about the SEN system and access to support/therapy etc that their child may need, when their very involvement and insistence of finding "what is wrong" - and that insistence is often needed to get even basic things done and put in place - can then be questioned by professionals as possible MSBP, Attachment Disorder, etc etc.

 

I don't think I have ever come across a parent where they child was flagged as possible ASD, assessed, diagnosed, supported in school and provided with appropriate therapy and placement - with no parental involvement needed to secure any of that.

 

It is just such a shame that it is just not seen for what it is. I suppose that questions of abuse or neglect have to be raised and answered. But going through that process as a parent/family is very very hard. Some children are misdiagnosed and some parents are wrongly accused and lose custody of their children. And having come to that conclusion it is so much harder to try to undo it all and get back onto the right track. It is a very hard system to navigate and I understand how so many just cannot do it. It should not be like that.

 

All I would recommend to any family is that if they suspect autism spectrum disorder that they seek a referral to a multi disciplinary team that specialises in diagnosing ASD. Usually that is a specialist speech and language therapist, a Clinical Psychologist and a Developmental Paediatrician or Psychiatrist.

[cristinita]

co morbidity is always possible with any condition as is as yet unidentified organic issues and there are NICE guidelines about extra care and attention re ASD and attachment disorder co existing which are RARELY played out in good practice on grass roots level never mind the restricted court approved expert witness lists all lining their pockets and protecting fellow nhs practitioners, sorry to be cynical but this is my experience - only recourse is overwhelming and complex complaints procedures which require guts and stamina and oodles of time and expert picking apart of issues, speak as one experienced and knowledgeable both inside and out of system..........so glad this topic is receiving lively debate and attention!!!!!!!!!!! gives me hope

[cristinita]

i am not from northfolk broads but from manchester any networks in this are re this topic welcome!!!!!! not sure why it has me down as being from there....must have clicked wrong button in what 2008? oooooooooops sorry

[Mihaela]

I thought that professionals could not give a dual diagnosis of attachment disorder and ASD?? That is why a wrong diagnosis can be so potentially harmful, because once you are going down the path of a diagnosis of Attachment Disorder you are not meeting any ASD specific professionals and ASD is not even going to be investigated.

 

Some children are misdiagnosed and some parents are wrongly accused and lose custody of their children. And having come to that conclusion it is so much harder to try to undo it all and get back onto the right track. It is a very hard system to navigate and I understand how so many just cannot do it. It should not be like that.

 

All I would recommend to any family is that if they suspect autism spectrum disorder that they seek a referral to a multi disciplinary team that specialises in diagnosing ASD. Usually that is a specialist speech and language therapist, a Clinical Psychologist and a Developmental Paediatrician or Psychiatrist.

Some very good points there, Sally.

 

Not only is the system hard to navigate, it can also be hard-hearted, and downright cruel at times. It tends to be the less-educated parents who suffer the most, for they're most likely not to question misdiagnoses. Not all of us have studied child psychology, and those who haven't are put at an immediate disadvantage. Professionals are too often assumed to be almost god-like figures whose pronouncements are unfallible. Nothing could be further from the truth. They do make mistakes, and countless children and families suffer as a result, simply because they are allowed to get away with it. Psychiatry isn't an exact science, and is largely based upon subjective opinion. We shouldn't have to struggle for justice, and navigating the system, and dealing with it, needs to be far more user-friendly. Service-users themselves need to be involved in making this happen. This is excatly what is now happening in my local area. We're meeting with senior NHS staff, setting targets, monitoring them and having an influence.

 

Yes, Cristinita, we need to be given hope.

 

court approved expert witness lists all lining their pockets

 

So very true, and often they have a conflict of interests here, and often they will willing lie to protect their paymasters. The bias against families is enormous. The average family can't afford expert witnesses.

 

sorry to be cynical but this is my experience

 

You're not being cynical; you're being realistic. I've read too much on this to call it cynicism.

 

only recourse is overwhelming and complex complaints procedures which require guts and stamina and oodles of time and expert picking apart of issues, speak as one experienced and knowledgeable both inside and out of system.

 

You've put this very well. I echo your feelings. I've gone through all this myself - it was so very draining and soul-destroying, and seems to be deliberately designed to be as user0unfriendly as possible. Nowadays all official complaint procedures are essentially intended to protect the organisaton concerned, and they're not averse to dirty tricks if they consider it 'necessary'. Another big adavantage they have over us little people is that they are highly organised and have seemingly limitless funds to plough into their cover-ups.

 

PS - Forget the Norfolk Broads thing. It's only your ranking on the forum. I now climbed as high as Ben Nevis!

 

[cristinita]

interestingly i was looking at the hcpc info re standards and fitness to practice issues in relation to pursuing yet another complaint but this time with them about 2 professionals (to name but few i would justifiably make serious allegations about ftp!) and stephensons solicitors who represent many local authority organisations and hire (i know) the most expensive challenging barristers etc. are advertising themselves also for lining their pockets as ftp legal defense lawyers for professionals to enable them to fight ftp concerns with the hcpc, talk about hand in glove omg was really concerned when i realised this yesterday - public generally do not realise half the corruption going on!!!!!!!!!!!!