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coolblue

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Posts posted by coolblue


  1. Don't know anything about Norfolk, I'm afraid, but would point out that at 4 your son is very young. Many young children show developmental delays that resemble autistic characteristics, so understandably, there's often a reluctance to diagnose or offer extra educational support, because as the child grows older the diagnosis might then not apply or the educational support might not be needed. And taking away a diagnosis or statement that was no longer needed could cause a lot of grief.

     

    If your son is suspected of having AS, especially if the traits are variable, it's unlikely he would get a diagnosis at that age, and if he is meeting the educational targets for a child of his age, the LA would have no reason to put him on the SEN register, never mind make a statutory assessment.

     

    Just guessing, but as the parent of a child who met the criteria for AS at 4, but didn't by 7, and then got a diagnosis of an ASD at 10, my advice would be to get your son's visual and auditory processing looked at. You might have to track down an optometrist and audiologist familiar with developmental disorders. Also, make sure he's assessed by a speech therapist. My son was very prone to ear infections at that age, and recurring episodes of fluid in the middle ear has long been suspected as a cause for the language delays and variable behaviour of children on the spectrum.

     

    I'm not saying that your boy doesn't have a developmental disorder, nor that he doesn't have AS (whatever that turns out to be) just that you are unlikely to get a diagnosis or a statement if he has variable traits and is meeting educational targets.

     

    I think the way to go would be to keep a very careful eye on the situation, keep a diary, and especially keep a check on his educational progress - what skills he has achieved. Some schools have a tendency to say 'doing fine' because the child might be meeting his or her individual targets, but still be way behind other children of their age.

     

    Hope this helps.

     

    cb


  2. Just a comment about diagnosis. A number of developmental characteristics were originally just descriptive terms, including dyslexia, dysgraphia, dyspraxia and autism. A shorthand for characteristics that were sometimes quite tricky to describe. The reason why they were descriptive terms was because no one knew what caused them - although if a child had a known disorder, such as a chromosomal disorder or brain damage, it was generally thought likely that it was the known disorder that was the culprit.

     

    We still don't know what causes them. The only thing that has changed is that because the DSM lists a set of characteristics for many syndromes, or groups of characteristics, it gives the impression that if some characteristics often occur together and have a label it means that we know there is a distinct disorder underlying the symptoms. We don't know that.

     

    Although dyspraxia isn't listed as a disorder in the DSM it is another name for developmental co-ordination disorder and that is listed.

    What's most likely is that the different labels are just different facets of the child's underlying disorder; so child A could have disorder A, which appears as dypraxia only, and child B disorder B that shows up as dypraxia and autism, and child C disorder C that shows up as dyspraxia, autism and ADHD.

     

    Although I can see why it might be helpful to have a label for each facet of the child's developmental/learning difficulties, I also think it leads to a great deal of confusion when trying to work out what is causing an individual child's problems, and classifying many developmental disorders as 'mental' disorders is quite misleading when many children have a lot of physical symptoms that are almost invariably ignored in diagnosis, because they aren't listed in the DSM criteria.

     

    Personally, although it was a relief to know that a paediatrician agreed that my son had a medical problem rather than a dysfunctional mother, my own son's 'diagnosis' has been a complete muddle and not ultimately at all helpful.

     

    cb


  3. My guess is that he has problems handling the sensory aspects of fast-moving, complex stimuli and so sticks to material that's relatively easy to process. My son flatly refused to watch what he called 'real-life' TV programmes (ie ones with real people in) until quite recently and even now he has real difficulty with accents, fast editing, loud music or a narrator who talks quickly. He's 12. We have to have catch-up-on-the-plot sessions during the commercial breaks.

     

    We watched loads of cartoons. Some, if you can get them, like Dexter's Lab, Ed, Edd & Eddie, and Jimmy Neutron are clever, funny and informative - ds learned loads through watching them. I'd suggest lining up a few more cartoons or other simple programmes for slightly older kids, or even something like Tom & Jerry, to expand his repertoire, and take it very gradually. Ds used to go through months of watching the same thing, and would then suddenly change.

     

    Hope that helps.

     

    cb


  4. The OTs who assessed my son had a play therapist working with them who was excellent. She did a lot of work on developing motor movements, anticipating what the other person was going to do, developing strategies, extending his repertoire of activities and so on.

     

    cb


  5. Not sure which bit you mean 'not really' about?

     

    The 'hope that's helpful' bit.

     

    I'm a little bit less cynical about more established things like OT and physio, but it depends on the context, the claims being made for it, and the individual practitioner... I do think, though, that you get lousy OT's and lousy physio's etc (just as you get good ones), and that it's as much to do with the 'mindset' of the individual as the qualification they've got... same applies to any other professional.

    Q: What do you call a medical student with the lowest pass in his year?

    A: Dr

     

    That's what I didn't find helpful. We, of all people, know how unprofessional professionals can be. Not sure what point you were trying to make.

     

    When you get to 'alternative' medicine - sorry, but most of it is just so much 'woooooo' (and no, it's not about keeping an open mind to the idea that just because you don't understand/can't prove it it doesn't mean it can't work, it's more a case of keeping an open mind to the idea that if you can't understand or practically demonstrate that it does work then it's probably a mixture of self delusion and wishful thinking).

     

    That would depend on why the medicine was considered 'alternative'. I think it's a false distinction. Just because medicine is orthodox doesn't make it good, and just because it's alternative, doesn't make it 'woooo'. As you say, what's important is the evidence base.

     

    PS: Not sure if your suggesting that not applying the same proviso to (insert name of established, recognised intervention) as i would apply to alternative interventions equates to some sort of double standard, but I really don't see it that way at all. Suppose I was to come up with 'sausage therapy' (whereby you fed children sossidges 3 times a day) and a load of old psychobabble to back up my claims that it had 'worked miracles and cured my son' would that be a good enough reason for other people to put it on a par with, say, OT?

     

    Oh, BTW - they're SPECIAL sossidges of course - my own recipe. I'm running workshops in how to make them, and if you attend one you can get the recipe and acreditation as a sossidge therapist in your own right. POA... ;)

     

    I just wasn't clear why you had such reservations about the title 'therapist'. I can understand querying the practice of say, play therapy, if you had doubts about the accreditation of the qualifications or a series of encounters with poor practice, but you appeared to be dismissing 'therapists' in general. Since there are a lot of different therapists, I wasn't sure what you meant.

     

    cb


  6. Hi -

    don't know anything, really, about play therapy, but many of the things you say the therapist has told you would worry me deeply, as would the fact that she's only 'training'.

    As far as qualified therapists go, the reality is that qualifications often aren't worth the paper their written on, and neither are the 'therapies' they are endorsing. Have not a clue whether that's the case for play therapy (or not), or this therapist (or not) but to make the point there was a cat recently featured on QI that had the most impressive list of qualifications you could wish to see - all of them 'genuine' in the sense that other than not stating he/she was a cat they had been bought and paid for by legal means and channels... just googled and found this on QI's cat:

     

     

    I've a friend (well, she's the mum of one of my son's friends) who is a 'fully trained counsellor'. Unfortunately, knowing the woman personally, I know she is also a very judgemental 'Born again' (don't get me wrong, I'm not knocking 'born again's' - just the judgemental aspect of this individual) with about as much empathy as your average, erm, cat! She's very good at patronising, though, and this probably goes down very well with the people who consult her because all they are really looking for is confirmation that whatever is wrong in their lives isn't their fault and they have no control over it.

     

    Hope that's helpful

     

    L&P

     

    BD

     

    Not really.

     

    Would you apply this proviso to occupational therapists, physiotherapists and psychotherapists as well?

     

    cb


  7. BD (sorry only just seen this thread - well I only joined a month ago!)

     

    Hello and welcome!

     

    I think what the OP means is that her daughter refuses to eat anything but high carbohydrate foods, which is the reason she's overweight and always hungry (due to the rollercoaster her blood sugar levels are taking all the time).

     

    You're right, of course; by buying spaghetti hoops and (presumably) white bread (which I'm sure you realise are nutritionally barren; it's perfectly possible to be (severely) overweight and suffering from malnutrition).

     

    Not entirely barren - they would keep you from starvation - but I know what you mean.

     

    Run a mile from anything which states it's 'fortified with vitamins and minerals' (usually breakfast cereals). If the crud wasn't fortified it'd be as nutritious as the box it's packaged in!

     

    Foods were first fortified because of widespread malnutrition in the early part of the 20th century. It's not possible to coerce people into consuming nutrients, but fortified foods do ensure that the population gets enough calcium and iron and iodine, for example.

     

    I'm hesitant to recommend a low carb diet for a child, but it would help her lose weight (fairly rapidly too) and therefore regain her self-confidence and self-esteem. Please realise that high fat foods (providing the fat's natural and not hydrogenated, partially hydrogenated or trans fat (sometimes listed as 'trans fatty acids') are GOOD FOR YOU!! It's not FAT that makes you fat, it's carbohydrates because they're converted to fat if you don't burn them off. I've eaten a high(ish) fat diet since going low-carb 3 years ago and, until this mysterious malaise hit, I was steady at somewhere between 8st and 8.25st - provided I kept low carb. If I cheated, I knew it immediately.

     

    A bit puzzled by the claim that carbohydrates are converted to fat. I thought they were broken down to complex and then simple sugars. Carbs provide energy which means that the body doesn't burn fat - is that what you are thinking of? Also, it's important to bear in mind that different people absorb and metabolise foods in different ways. What worked for you might not work for other people.

     

    J's Mum: - The thing about drinking 8 glasses (2 litres) of water a day is another myth. As that ad for Strongbow proclaimed - 'obey your thirst'. Same with water. I drink sparkling throughout the day, flavoured with a twist of lemon and/or lime juice. I would also steer clear of 'sugar-free' drinks, too; if you MUST buy them, go for sucralose-sweetened (it's the lesser evil - avoid aspartame like the plague!)

     

    I agree with that! Too much water can flush out minerals.

     

    I would also recommend curbing juice/pure fruit smoothie intake as fructose is as bad for causing an insulin spike as sucrose/glucose. DON'T allow her to drink her calories

     

    Agreed. Bit tricky if the child doesn't eat any fruit or veg, though.

     

    I would always caution against seeing a dietician/nutritionist, because they don't have a clue what a healthy diet is - it's always high-carb, low-fat when, for weight-loss and general wellbeing it should be the other way round.

     

    The natural primate diet (ie the one we evolved to eat) is generally low-carb, low-fat (leaves, roots, fruits) with high protein, high fat spikes (occasional animals).

     

    Back to the OP again. Sausages and cheese - both excellent foods, provided she's not got a dairy (usually cows dairy) intolerance. Make sure the sausages are as premium as you can find and ensure they don't contain rust, oatmeal, or other fillers, or added sugar. The high fat and high protein content (provided carbs are severely restricted) will cause rapid fat loss and, therefore, should help her to regain her self-esteem.

     

    5-a-day is another myth - all that fructose will lead to weight gain, as will over exercising. Exercising to 'build up an appetite' will also defeat the purpose and make anyone gain weight. When you exercise, your body first burns off consumed carbohydrate (which has been stored as glycogen) and if you push yourself too hard, it will turn on the muscle stores. To burn fat, you need to avoid chronic cardio, and exercise at between 55 and 75% of maximum heart rate for NOT MORE than 30 minutes 5 times a week. If you eat to the point of being ravenous, your body will tell you to eat high-sugar carbs (why do you think isotonic sports drinks are such big business...? Fast acting, quickly absorbed glucose, that's all they are). Because you're eating high sugar, your blood glucose will spike rapidly, then fall equally as rapidly, once again leaving you ravenous, so you'll go and raid the cake/biscuit tin again, and the cycle continues, undoing any benefit of exercise. Because high-fat and high-protein foods have no effect on BS levels, you don't go through this cycle, so you lose, rather than gain, body fat.

     

    This is why ads for shredded wheat (made to keep your heart healthy - erm, no it's not - you eat that every day, and you're on a one-way ride to heart disease!) make me so mad!

     

    I'm sure I'll be shouted down for posting this, but what I say is true - dieticians and nutritionists don't know squat! One day, I'll become the first dietician in the country (not that I am one, but I intend to be) to break all the current 'rules' and have overweight people eating a high fat diet!

     

    Most of this advice seems reasonably sound, but as the parent of a child who has serious difficulties with the taste and texture of food and whose health has suffered as a result, my overall comment is 'chance would be a fine thing'. In my daughter's case, we have had to gradually extend her repertoire, working out from food she likes. She was perfectly capable of not eating anything at all, and also used to vomit if food was the wrong texture. The key issue, to my mind, is to move on to fruit & veg and a wider variety of foods. I think J's mum has some very good ideas for beginning what can be a really delicate balancing act.


  8. An ASD is defined as a 'significant' impairment in social and communicative behaviour plus restricted and repetitive behaviours. So technically, 'social and communication difficulties' would overlap with ASD but not include it completely.

     

    Whether 'social and communication difficulties' is an accurate enough description of J's educational needs will depend on what needs he has. Some children might meet the criteria for a diagnosis of an ASD but their restricted and repetitive behaviours are not a major problem. For others, the restricted and repetitive behaviours might be the most challenging issue they face.

     

    As for Pt 4, this is supposed to be left blank in a proposed statement, in order not to influence the parent's school preference.

     

    cb


  9. Don't know Dorset - well, not in terms of educational provision - but my advice would be that this is not a good time to be moving house for educational reasons. The SEN Green Paper is due out this month and could lead to some major restructuring of the sysem. And all local authorities are currently reviewing their budgets and reconfiguring services anyway. A local authority that looks promising today might look very different in six months time, when the dust of redundancies has begun to settle.

     

    What's important for a 4 year-old is not a statement per se, but what's on the statement. One to one support is useless, and indeed can be counterproductive if it's the wrong support. Nine times out of ten, whatever the child's diagnosis, what is crucial at this early age is input from a speech therapist, physiotherapist, occupational therapist or psychologist. If you have money to spend, spend it on an assessment from each of these people, rather than a tutor who might not have the awareness of the developmental issues underlying the learning difficulties.

     

    Hope that helps.

     

    cb (parent of 12 year-old with dx of ASD - received only 8.5 years after first raising concerns, and currently undergoing statutory assessment for the first time)


  10. I'm not quite sure who to go to.

    I could go back to the Developmental Paeditrician??

     

    Try the paediatrician and then work your way up the hierarchy. Someone in the system should be responsible for ensuring that your son gets the support he needs; it's simply irresponsible to refer him to a service that's being withdrawn. That someone, I suspect should be working in the health service, because regardless of what developmental condition he has, or whether his 'mental' health is affected or not, it's clear that school is affecting his physical well-being.

     

    cb


  11. It sounds like what the CP had to say made a lot of sense. But if CAMHS can only deal with 'mental health' issues, that means that *no one* is dealing with developmental issues. That's extraordinary. Surely developmental behavioural issues fall slap-bang within their remit? I think I'd start asking some hard questions from someone a bit higher up. This sounds like another case of a child falling between services. This is shocking.

     

    cb


  12. I understand what you are saying, but my son has a moderate/severe speech disorder and he just would not be able to answer that type of question. Which is all part of my reasoning that being mainstream is not appropriate.

     

     

    Snap!

     

    Asked question: "I don't know!" (writhing)

     

    "I can't decide!" (flaps hands)

     

    "Aaagh!" (hands over ears)

     

    It's possible that a *very* gradual introduction to home tuition might work. For the first four of my son's tutor's visits, he said "Hello" and then went back to his bedroom. We had a cup of tea and a chat and left him to it. On visit five, we'd just been making words on a calculator display when she arrived, and he showed her these - and then went up to his bedroom. Now, four months on, he does 40 mins of maths and english with her each time and comes downstairs as soon as he hears her car arrive. She's been great, let him take it at his own pace and has let him do a lot of talking about what he's interested in.


  13. Okay, your posts are sounding more positive.

     

    But who decides to provide the sick notes. This time I went to the GP. Who decides next? CP have said it is not them as they are not an accute service. And CAHMS seem very busy and I don't have a further appointment for them. Is this something I raise at the meeting tomorrow?

     

    There are two issues involved here. One is whether or not the child is being educated and the other is the child's school attendance. What our LA wanted to cover our dd's frequent absences (due to tonsillitis) was a letter from the GP saying that dd wasn't well enough to attend school until xxx date. We didn't realise this because all what we were told to do by the EWO was to 'get a medical certificate next time she's ill'. I had assumed there was a recognised protocol in place, like certification when you are off work. Not so. The GP we saw shouted at us when I asked him about this and said he didn't have time to issue medical certificates to school children. Another GP agreed to write a letter but didn't put dates on it because we hadn't asked him to because the EWO hadn't told us that was required.

     

    The other issue is the child's education. The LA has a statutory responsibility to put educational provision in place if a child has been off school sick for more than 15 consecutive school days. How they do that is up to them. When dd had been off for more than 15 days,the LA were quite happy with her school sending work home once a week, except that it didn't happen. Clearly they don't want kids throwing a sickie to get out of going to school, so they have developed a policy to prioritise access to the tuition service. Theirs (in common with many other LAs) specifies that a child has to be referred to the tuition service by a practitioner at consultant level on the grounds that a medical condition makes it impossible for the child to attend school. They wanted the consultant we saw to specify how long dd was likely to be off school - which he couldn't do because he didn't know. By this time I felt as if I was banging my head off the proverbial brick wall. In the end the EWS drew up a form to give to the GP to sign to cover dd's absence but since I had been teaching her myself for months, we decided to take her out of school completely until she was better. If it hadn't been so worrying it would have been farcical. If I'd known it was going to be such a muddle, I would have told the EWO to tell the health service what they needed and let us know when they'd sorted it out. As it was, I spent months being a very confused piggy-in-the-middle.

     

    In ds's case, his paediatrician was more than happy to write a letter saying he wasn't medically fit to attend school (because of ASD/anxiety) and recommended that he be referred to the tuition service. This ticked the LA's boxes and the tuition service just leapt into action. Mind you, his paediatrician was keen for him to go back to school. How she would have responded if he was still in school, I don't know.

     

     

    What I want to know is how is anyone going to gauge how much he can take before he needs a break? I can see that home tutoring is not alot of hours. But my son is not able to request breaks or even recognise what he feels from an emotional or sensory point of view. So whoever is in charge needs to automatically build in breaks and not expect him to request it.

     

    This is an issue about who is taking responsibility for your son's education and there's a big loophole in the legislation allowing everyone to blame everybody else. Legally, you have responsibility as parent, but the LA have a responsibility to provide the education if you ask them too. But the education is delivered by schools, who are perfectly capable of constructively excluding a child deliberately or unintentionally. The LA cannot compel the school to provide a suitable education even though that's what the school is supposed to be doing. And then everyone can turn round and blame you because you haven't managed to magic your son better.

     

    You could try asking them what they would do if it was their child. But do get them to give you explicit instructions about the doctor certificate thing - and copy the instructions down and then show them what you have written and ask if that is what you should do.

     

    I'll take the dictaphone and see what response I get.

     

    Apparently they are also going to complete a CAF on that day.

     

    Good luck.

     

    cb

     

     

    Good


  14. A new brain scan has been discovered to diagnose Autism.

    The computer can tell small differences in the brain so tell if someone is on the Autistic spectrum.

     

    What this research actually found was that there was a correlation between someone's autistic symptoms and their brain scan. This is hardly a surprise. The brain works on a 'use it or lose it' principle, so if someone had been showing autistic behaviours from an early age their brain scan would reflect this.

     

    I had brain scans in the eighties and they could not find any differences in my brain.

     

    What you had was a scan to see if there was any brain abnormality or damage that could have caused autistic characteristics. Not the same thing as a diagnosis of autism.

     

    When the brain scan is fully in use we do not know if people would count as Autistic if they behave like an Autistic person but it does not show on the machine.

    That might mean they would not obtain the help they need.

     

    Quite.

     

    I have nothing to do with the Norfolk Broads as I live in London.

    I do not know how to remover Norfolk Broads.

     

    The place name is to do with how many posts you've made, not where you live. Ignore it.

     

    cb


  15.  

    The other question I have is about the out of school education service. If my son is suffering with anxiety, how is he going to cope with someone coming into our house and turning it into a school, or him travelling to a different environment to learn. Do the teachers have any training in ASDs or SpLD? Will they be a help or will this just cause more distress?

     

    My son (12) has had home tuition for the past three months - one hour twice a week - as part of his transition back into school, and as part of his statutory assessment (the teacher assessment part). He's had two tutors, neither of whom has had ASD/SpLD training, but both of whom have been brilliant, even though totally different. (The first one asked to change because she has a hearing impairment and couldn't lipread my speech-impaired son!) The second tutor might not have had any specific training, but she's clearly very experienced and adaptable and unfazed by anything. It took ds a few weeks to get used to the idea, and he has gone back to frequent bed-wetting, so I think there's some underlying anxiety, but generally, he's not only been co-operative, but very engaged with the whole process.

     

    Having said that, he had been home-educated for three years, which has given him time to recover his composure, re-evaluate what happened in school, discover his strengths and weaknesses for himself, and to question the approaches adopted by teachers, so he's not the same child that we took out of school. Also, our tuition service has won awards, and I'm not surprised. Using it has been like stepping into a different world. Shame schools don't adopt the learning models it uses.

     

    The service also has tuition centres. The reason ds wasn't allocated a place at one of these is that he was significantly younger than most of the kids at the most appropriate one, and since he was home-educated anyway, a transition via a home tutor made more sense.

     

    cb


  16. Be aware that autism is a descriptive term for a set of behavioural characteristics, not a clearly defined disorder in the way that Down syndrome or Fragile X would be. It's quite likely that many children's autistic behaviours are caused by a chemical imbalance, rather than there being a chemical imbalance in addition to the autism, if you see what I mean.

     

    As for what kind of chemical imbalance it might be....

     

    There are several different kinds of neurotransmitters in the brain acting on different types of sites on neurons that could affect behaviour. Those neurotransmitters could in turn be affected by chemical imbalances in the rest of the body. It's still early days as far as brain function research is concerned, which is why we still don't know what causes autism in most children.

     

    Ideally, autism is dx'd IF behaviours match the diagnostic criteria for autism, AFTER medical conditions known to be associated with autism, such as Fragile X and other chromosomal disorders have been ruled out through blood tests.

     

    Essentially, your child's educational needs should be being met at school regardless of what diagnosis he has, and his medical needs should be being met by the NHS regardless of his diagnosis, so unless he has health problems that aren't being addressed, what diagnosis he has isn't as important as what his needs are.

     

    cb

     

     

     

    cb


  17. This is mad, isn't it? Even though the LA has a duty to provide a suitable education for the child, and you'd think, after 150 years in the business they would have encountered children like this previously, they can't manage it for another seven months. What on earth is going on?

     

    cb


  18. Hi Sally

     

    We had problems over our daughter's attendance at school in Y7. She had been in poor health for some time and then got recurring viral tonsillitis and was clearly not well enough to attend school for several weeks. When she did go back to school she caught a virus and developed tonsillitis again. Apart from having a rather poorly child, the biggest difficulty we had was with the Education Welfare Service.

     

    We were not given clear information about the legal position, or about the LA's obligations, either verbally or in writing, despite being in contact with the EWO on and off for a couple of years about the same issue and despite asking where the relevant information could be found on the LA website. I had to figure out what the situation was from other LAs' websites and information from other parents.

     

    No clear strategy was put in place. The school said it would send work home each week but didn't; the EWO kept telling us to get a letter from the doctor, and then from a consultant, which we did, but it was never the sort of letter she wanted. There was a 15 week waiting list for ENT consultants at the time, so we ended up paying for a private appointment.

     

    We kept getting phone calls from the school fretting about dd's attendance and telling us she was missing her education as if they thought we hadn't realised this, or thought we could magic her better, or something.

     

    In the end we got so fed up with the whole thing, and felt so sure that the pressure to 'get better and return to school' was making her worse, that we de-registered her from school to educate her at home until she had completely recovered. It turns out she had glandular fever. Five years later she's still not fully well.

     

    The whole business was characterised by lack of clarity and poor communication and the EWS appeared to be making its policy up as it went along. It was clearly driven by attendance targets, rather than concerns about health or education. Everyone was so focussed on her school attendance, little attention was being paid to her health, which, I suspect was why the glandular fever diagnosis took so long.

     

    With hindsight, I would not take anything for granted, and would want specific information about policy, a clear written, agreed strategy and accurate minutes of meetings. In the past, in the absence of anyone to take notes for me, I have written up the meeting immediately afterwards and circulated them to attendees giving them the opportunity to correct them if they're wrong. If you've had inaccurate minutes in the past, I would insist on being able to make a recording.

     

    Good luck.

     

    cb


  19. Hi J's mum

     

    This might not seem relevant at first, but bear with me.

     

    My 16 year-old daughter has twice been suspected of having a Fabricated or Induced Illness (FII). It wasn't clear whether she was suspected of fabricating it, or I was, or both. It turns out that dd has had an Epstein-Barr virus (EBV) infection (glandular fever). This virus can remain dormant in nervous tissue and reactivate if the immune system is impaired, by another infection, for example. We were told she could have had the infection for many years (she's had recurring problems since she was five) and the reason it hadn't been picked up, as far as we can discover, is because there are several tests that indicate EBV and which test is done in what timeframe after an episode is important. Wrong test at the wrong time and you get a false negative.

     

    Each time a FII was suspected, the people making the suggestion had not seen her full medical history; the first time they changed their minds after the school nurse saw dd's medical records and the second time after the blood tests a paediatrician had said would come back negative, came back positive.

     

    It's possible that some parents do have a mental disorder that makes them fabricate and induce their children's illnesses but that mental disorder is not common and is not well-defined. It is certainly not acceptable for non-medical professionals to make allegations like this, nor is it appropriate for medical professionals to do so either, not without careful consideration of the evidence and a referral to someone qualified to make a decision.

     

    I would always ask what evidence the person making the allegation has seen, on what evidence they are basing the allegation, and how they have ruled out the possibility that the parent might be telling the truth about their child's symptoms. In my experience, they often know next to nothing about the child's history.

     

    Best of luck with the solicitor.

     

    cb


  20. IQ is an average of a bunch of tests that assess a range of abilities. People with ASDs tend to have what's sometimes referred to as a 'spiky profile' which means they can do brilliantly on some tests and very badly on others. So the average (the IQ) doesn't really tell you very much.

     

    The individual tests can be very useful because they can tell you where your strengths and weaknesses lie. If you didn't already know, of course.

     

    cb

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