LizK

Not talking about me as we get DLA but have a friend whose son probably has some degree of AS. It's never been a massive problem for him or the family, they have made a few adaptions to every day life to accomodate him. Likewise with school where he's found a niche at school, a couple of friends and doing well. My friend has always known her son was different but it's only since hearing me talk about my son that she's realised her boy may well be on the autistic spectrum. However her son's differences are not really causing any major problems that can't be dealt, she's found things have got easier as he's gotten older too so she's never pushed for a diagnosis let alone DLA Lx

That one really winds me up too The number of people who have said but he can't be autistic/aspergers because he's affectionate/lively/loving/talks/ etc delete as appropriate! Talking to my mum about the possible diagnosis the other night and she said 'but he's not properly autistic is he, after all he's got all his lemon drops' FFS!!!!! Once again if DS isn't like Rainman he can't possibly be on the autistic spectrum. Why the hell do people think it's now called autistic SPECTRUM !!! When it is friends or family I can partly understand it as they think they are being reassuring. Goes along with them trying to give false reassurance by telling me how their NT child does similar things to DS, again they mean well even if very annoying. When it's someone in a more professional it is very annoying. Lx

It's apparently very complicated. I naively thought you add up to total score but that's not how it's done. The questions are weighted towards different aspects of behaviour like ADHD/ODD/cognitive problems. How you score the answers gives a line graph with the line being highest in the area most likely to be the child's problem. Clear as mud ! Liz x

Thank you Minerva . You're a star Liz x

We've not got a diagnosis yet though likely to be ASD. Not sure whether my son (4) will technically fit the AS criteria as he has a 1 year speech delay (see threaad about 100s years for more chat on this) but he appears to be at the milder/higher functioning end of the autistic spectrum. First thing we noticed was that his development slowed down after he was 3mths and he became irritable. Never had richness of eye contact. His speech development was slow, didn't babble until 12mths, 22mths before first word and his speech development has been disordered. He coud recognise half the alphabet when he was 2.5yrs but could barely put a 2 word sentence together. His other main issue was social anxiety and crippling shyness in new situations or with new people. it is only recently at nursery that he has started to play more with the other children and make friends. Very noisy loud places (like a new soft play centre) would scare the wits out of him. Recently his social anxiety has improved but has been replaced by social overfamiliarity and inappropriateness His imaginative play is poor comapred to his peers. He's recently started doing some symbolic play that he models on things, he will join in some basic imaginative games with other children but can't initiate it on his own. He developed a door obsession when he was 10mths and still loves all things mechanical and door related, he's jsut swapped cupboard doors for electronic shop doors or opening and closing the CD player. He has a few other obsessions but these can change. He gets into fixed routines easily but is surprisingly easy to get out of. He strops for 10 minutes and then moves on. He's not really a tantrummy child mainly cos he can be fairly laid back and flaky! Many of my friends with NT children have had far worse times with tantrums. He's not overtly aggressive either though when he gets overexcitable or overfamiliar he can be very physical and often ends up hurting someone HTH Liz

Is this available on line? Googled it but can't find it. Just wondering if anyone knew before I do a bigger trawl. Thanks Liz x

I may be in the monority but I still don't like the word Aspie, it instinctively doesn't feel right! Actually it's not the word itself thinking about it it's how it's used. So saying something like 'my son is an aspie' makes me recoil because it makes him sound like that's all he is. He's not just an aspie or anything else, he's Adam! His personality may be intrinsically linked with his ASD in a symbiotic (or parasitic if we're having a bad day) relationship but he's still got his own unique personality traits, there's more to him than just autism. Both aspects of him are important and recognised but calling him an aspie seems to deny his individuality and his identity. So maybe it's how I understand the word being used. I guess calling a child an aspie as a descriptive term for 'my child has Aspergers' is a different use just like you'd more describe someone with diabetes as a diabetic Gah, rambling now. Can't put into words what I'm trying to say! Aks me in five years if I feel the same I have realised I interchangably say that Adam 'is autistic' as well as saying 'having autism/ASD/AS' simply because I think the former sounds better semantically than the latter Lx!

Not sure how to deal with this one with DS (4yrs). I breastfed DS until he was 2.5yrs old. After I stopped he'd occasionally pull at my top around my breasts if he was upset and needing a bit of comfort which I think is fairly normal for brfed toddlers. If he gets very anxious now he'll still tug at me there now. However over recent months (as he has generally got more excitable) he has starting touching women on their breasts momentarily usually when he is overexcited . I took him to get his hair cut yesterday which usually overexcites him and as well as repeatedly trying to grab the scissors/hair gel/clippers etc (yep it was stressful!) he suddenly launched himself at the hairdresser (young girl of 20) and groped her chest who looks completely taken aback. I was so embarrassed. He's tried to do the same to the preschool teacher who does hone visits too usually when he's wound himself up into a hyperactive frenzy. Breasts aside he likes to fiddle with people's ear lobes and fingers which can be painful especailly if inflicted on his younger brother. I was chatting to his keyworker at nursery and she said that he sometimes pokes her chest. She tends to ignore him. She also said that he come sup behind them and pulls at and straightens their shirts which long in style unfortunately sit around their backsides so in effect he's groping their bottoms I know DS doesn't have any malicious or sexual intent with this. He does have issues with poor attention and impulsivity plus he fails to read social cues, can be socially over familiar and in your face at times and he just doesn't realise the implications of it. I also think there is sometimes a sensory element too as he likes the squishy feel of breasts and ear lobes. He's a dreadful fiddler anyway and sometimes seems to be compelled to twist and fiddle with things and think that's where some of the ear adn finger twiddling comes from. Problem is I'm not sure how best to deal with it and get him to understand it's socially inappropriate before it becomes a bigger problem. Obviously he can't continue to grab women's breasts and it will become less acceptable as he gets older. I don't think ignoring it working as by doing nothing I think we may be giving him the message it's fine to do. He has a speech delay with about a 12mth delay in receptive speech so his understanding is more immature. Trying to explain to him at the time when he's hyperexcitable makes it difficult to get through to him as his brains on another planet though that's the only way I can think of dealing with this. He's not got the understanding yet to be able to discuss it with him after the event. If he pulls at our ears we try to distract him or explain that it hurts if he continues So any advice on 1) how to deal with the impulsive breast and bottom grabbing and 2) the body part twiddling would be very gratefully received Liz x

Thanks Malika That does make a lot of sense! Wonder what the definition of 'normal speech' is? DS is now classed as fluent but his speech isn't normal for a 4yr old? His vocab is getting closer to age appropriate but other aspects of his language development (like positional sense, processing of commands, social aspects of speech) are still delayed and I wonder if he'll always have some sort of difficulties in these areas? I'm sure I've read that children (or adults) with AS do have differences in speech and language even if theyare more subtle. Speech isn't just about words after all. Agree completely about labels not mattering (in an ideal world!), suppose it is semantics really, We're currently fortunate that despite no diagnosis we are getting help based upon DSs needs hence why we've not really pushed for one. However I am concerned that once he enters full-time education that situation might change. Paed still thinks he should get help based on a problem list rather than diagnosis but suspect the LEA might view it differently Lx

There is also research indicating that high dose vitamin C (? greater than 500mg a day?) can actually be carcinogenic. Really annoys me too when b ) morphs into especially of posting a message with a serious tone Liz x

Going back a bit further up the thread to issues raised re AS or ASD personally want DS to have a diagnosis of ASD rather than AS whenever a diagnosis materialises. Mainly because I find the varying definitions of AS confusing and am not completely sure I understand properly what is it whereas I do for ASD! The issues with language development are particularly confusing having read varying criteria. Seems even the experts can't agree? What is fluent speech? DS's speech is fluent according to one definition I've read but he still has a speech delay and also the disordered speech development typical of autism Came across different criteria from The Institute Of Child Health who have developed a computer programme questionaire to help aid diagnosis. According to that DS neither has AS as he had speech delay but neither has autism as his speech delay wasn't sever enough to fulfil the criteria. He fell in the group of 'atypical autism' whatever that may be. Confusing to say the least! In many ways can see why Aspergers is a redundant term if it is perceived as being something different to autism or always a mild variant rather than a type of autism of varind severities. However lumping all children under the ASD umbrella seems to deny the huge range of ways ASD is expressed risking a one-size-fits-all approach. Maybe the division onto high functioning and low functioning is better though what does high functioning mean? It seems an arbitrary decision, is is based upon normal IQ, normal speech development or less severe expression of symptoms or what? Liz

Agree. The number of people who have shown abject surprise at the DS's likely diagnosis because he doesn't resemble Rainman! I think too the medical use of term 'mild' may have a different meaning to the lay person's understanding of 'mild'. Medically 'mild' is sometimes used to describe a different level of severity which may change throughout the person's life rather than meaning 'insignificant' though I'm sure it is used in that context sometimes With DS I sometimes see him getting more 'autistic' as he gets older maybe because the differences between him and his peers is more obvious? In other ways it is less so. DH though largely 'outgrew' his AS-ness. I don't know whether he would ever fulfill the relevant tockboxes for AS but certainly had a lot of traits, He describes having a Damascus moment when he was twelve when the world suddenly made sense to him and he thrived. Prior to that he was a miserable anxious socially isolated child with few friends and need for specific rituals and routines. He still has his quirks and his AS traits are more prominent when he's tired, stressed or unwell. I don't know why things changed when he reached his teens, guess there could be lots of reasons really. Paed who DS sees says this sometimes happens with the littl'uns that they can mature out of it to some degree or other, though never completely, but it is variable and in his experience difficult to predict Liz

I describe my son as 'mild' ASD because language development aside his other traits are not currently over-impairing for him and I know that things could be an awful lot worse for us so I try to be thankful for how he is and we are . It doesn't mean to say he doesn't have problems and difficulties that need addressing or that I don't find parenting him incredibly hard at times, he just has different needs which are equally as valid. It is a real bugbear of mine that most of the local ASD services are directed towards those with lower functioning autism and there is little help for kids like my boy . I dn't know if DS will technically fulfill the criteria for AS due to his language delay but people automatically assume that if he has mild ASD he must have AS which I'm not sure, for us at least, is the case. Surely with AS the severity must vary from person to person from mild to severe but assuming that AS is synonymous with mild ASD is clearly wrong. I think on forums like these we are a self selected bunch to a degree. IRL I know of two friends who children both likely have AS but as neither is particularly affected by it emotioanlly or practically and it is managed withine the family and school they have never pushed for it to be taken further. I guess those children may be classed as 'mild' but clearly others aren't. Anyway back on topic I for one would objest to the title 'helpful hints for happy aspies' Liz x

Wow! Great breakthrough! So pleased for you Here's to many more! Lx

Adam's paediatrican if and when he reaches a diagnosis on Adam has said he will use the terminolgy ASD rather than AS for the reasons you've given now and previously. Although ADam may be on the 'milder' end of the spectrum it doesn't mean his needs are any the less, just different. The local CAMHS psychiatrist with an interest in this area also uses ASD now though some parents apparently prefer the label of 'Apsergers' rather than 'autism' as it doesn't sound so 'severe' But going back to the original thread yes that would be a fine idea Liz x

They are the same child regardless of the label given. Think it's easy to see them as a diagnosis or to become overwhelmed by it all and lose track of the child underneath Sometimes you need to immerse yourself in 'special needsdom' to get things done but sometimes you need have a break practically or emotionally from it, focus on the positives and just get on with normal family life Thanks for the email btw Liz x

That is the thing that upsets me. My four year old loves playing with other children, talks a lot about his firends and at the moment things are going well. Thanks to the efforts of the staff he's mixing much better with the children at nursery and more importantly they want to play with him and we see other friends outside nursery for play dates. It's the future that worries me, when he starts school with a bunch of kids he doesn't know or as kids get older and are less forgiving. Reading the posts from parents of older children made me feel sad for them and for the possible future that my boy might experience Liz

I am NT female with H with AS traits, DS1 with probable ASD and DS2 who seems NT but too early to tell really Liz x

Thanks Mel-Jayne. You are right it is confusing and trying to piece together what is due to which is difficult. In some ways his concentration issues helps counterbalance his ASD issues but in other ways it make sit much harder (for me!) Mothereve, thank you so much for pointing me in the direction of that paper. What a coincidence Interesting about how ADHD may not be a disorder in its own right, that seems to apply to my son anyway Can anyone else esp those with children with dual diagnoses of ASD and ADHD help? It's something that I'm struggling with at the moment and would love to hear of others experiences. Hope my original post makes sense, I have been known to warble on at times Liz

Read this thread with interest as having some issues with my 4 year old hurting his younger brother. Probably will post about it separately when I have time as it's really getting me down , worried I've got a developing psychopath on my hands Interesting! We tend to say 'No hitting/poking/squeezing' etc or 'Hitting hurts' but will try that approach instead. Didn't realise the NAS has a helpline as feeling fairly isolated in getting help for some of DSs beahvioural issues. Same with my DS too! Also if he's angry about something he'll go and pinch his brother as a way of dealing with that. Really need to teach him some ways of appropriately channelling his anger. Any ideas anyone? Lynne, one thing useful I have been told is that with kids like ours any behavioural methood or change often takes longer to work than with an NT child. I often forget this, give up hope and get despondent when maybe I need to be more patient and catastrophise less Liz x

Not sure if I'm making much sense in the title but hope someone can help especially those whose children have ASD and ADHD. I don't think DS (4) has ADHD but I think he does have some difficulties in that area. He's not got a formal diagnosis yet though likel yot be along the lines of milder ASD, AS or DAMP. My son (4) has a lot of trouble concentrating at times and has poor attention. He can be quite impulsive physically and emotionally, gets carried away with himself at times becoming hyperexcitable, manic and quite out of control. I'm never sure whether this sort of behaviour is all part and parcel of ASD or whether he has a separate attention/concentration problem. Do you think having ADHD or attention problems alters how ASD presents? Does the ADHD counterbalance some of the ASD traits? For example aside from a couple of specific activities (CBeebies on computer, marble maze) my son is unable to occupy himself or play alone at home and wanders around like a bored teenager asking for me to play with him. Makes the day hard work as he needs constant supervision, gets easily bored and resorts to slamming doors, trying to turn to microwave on so can watch the digital display or fiddling with the washing machine buttons before moving onto something else Yet I hear about other children with AS/ASD who spend hours playing with specific toys even if repetitively. DS just hasn't got the attention span to do this. I'm not sure whether his boredom is related to his ASD in the fact he has limited imaginary play so can't relate to age-appropriate toys or whether it is more of an attention problem. He is emotionally impulsive too, will give me great big hugs and kisses and then dash off. Many people have been surprised he may have ASD as they describe him as an affectionate little boy. He can show crippling social anxiety in strange places or with unfamiliar people but once he is familiar and happy in a situation he can go the opposite way. It's like his emotional regulatory thermostat is out of sync so either under or over does it. He changed room at nursery 2 mths ago, initially was distressed and withdrawn so the change had to be done gradually. Within a week of being settled he then went the opposite way and is now often overexcitable and loud. When he is withdrawn he has less of a desire to interact with others but now he's playing much more with the other children and moreover they seem to want to play more with him. We notice a difference with his speech too. He has an expressive and receptive speech delay of about a year. If he's calm and more ASD than ADHD he doesn't talk so much but tends to listen and understand better. If he's a little sped up we get the best of both worlds in a child who will chatter along but will also take in anad process what we are saying. If he's very sped up he talks ten-to-the dozen, often compeltely inappropriately and doesn't seem to register or listen to a word you say Aside from the above he has a real problem sitting still. He'll often want to sit on my knee but he just fidgets and squirms constantly and it gets quite uncomfortable. He often tries to poke or prod me, fiddle with toys or random objects often without thinking and still likes to mouth or chew toys. If we are out in shops he almost seems to have a compulsion to fiddle with things on the shelves or impulsively try to run off somewhere whcih can make shopping trips stressful. The thing is he's so variable too. We can get days when he seem slocked away, days when he's more ASD like than anything, days when he's a little hyper but manageable (these days are the best as he's sociable, interactive but can generally concentrate ) and then times when hyperactive to varying degrees, sometimes completely out of control and I feel like the worst parent ever The hyperactive days are getting more frequent I think I think he does have some sensory issues and wonder how much of that is responsible for his variable concentration. If he gets sensory overload he tends to go a bit manic. Changes in routines or lack of structure also make him like this. Sometimes he jsut seems to be like this for no reason which is why I'm wondering if he has a primary attention problem rather than it just being secondary to ASD stuff. In some ways he's less impaired when he's more ADHD like but it makes it harder for me to parentWhen he is high he often doesn't strike as the (stereo?) typical child with ASD so was wondering if ADHD and ASD can balance each other out to a degree. Be really interested to hear anyone else's experiences or thoughts Thanks Liz x PS Sorry post so long

If you are very fortunate there might be an adult psychiatrist or psychologist in your locality with an interest in adult ASD. I think they are fairly few and far between and not sure they do much specifically for ASD beyond diagnosis work. I know someone whose son was diagnosed by this route when he was in his early 20s. Liz x

Thanks everyone! Seems lying comes in all sorts of different shapes and sizes Oh so true! Phasmid Different situation but what you described rings so true! DS is going through a handy phase with his younger brother. If we ssay soemthing like 'don't poke your brother' he stops poking him but then starts to pinch him or try to lie on him . I'm sure in his mind he thinks he's obeying as we've not said not to do that. We end up saying something like 'don't poke, hit, pinch, tap or touch him' trying to cover every sort of painful physical contact he could inflict. He then loosk suitably unimpressed as he can't find a way around it then and if he continues he knows he's being naughty Sadly not though I don't think he realises the extent of what he's doing. Left them unattended for a minute or so today and came back in to find DS sitting behind his little brother one hand on either ear pulling and moving them like he was driving a car. My poor baby was not happy, screaming and protesting loudly with bright red ears yet DS carried on merrily. He knows it is wrong and that it hurts Daniel and makes him sad but he gets carried away. As he struggles with empathy and has an immature understanding of emotions it must make it harder for him. We went through a similar phase a year ago when D was born so hope it's just another short lived phase too Liz x

Been meaning to ask this for a while but reading the thread below about The Brief reminded me. I've come across the statement that children with AS/ASD can't lie several times. A year or so back a 11year old girl was murdered by a 18yr old with AS and the grounds for his appeal were that he because he had AS he couldn't lie hence was telling the truth when he said he didn't do it. Was reading the 'The Curious Incident....' novel and the main character in that states he can't lie because he simply can't. Then read a similar statement on an ASD info website I understand why this could be the case with the absence of Theory of mind etc but is it always? My four year old is starting to lie and show signs of being devious which I assume is a normal developmental stage for NT children. It's so far been only over minor things. For example he asked to go into the spare room to get a toy when in fact he didn't want the toy at all but wanted to go on the computer! He will say he needs a wee when I'm putting him to bed when he doesn't but is using it as an excuse to delay bedtime. If I see him hurting his brother (likes to twiddle his ears currently ) and I ask him if he's hurt him he'll sometimes say no despite knowing I've seen it! I know you can never say something 'always' happens especially for a condition like ASD which is expressed in so many variable way. However the times that I've seen the thing about AS and lying it's like it's an absolute must and people with AS simply can't tell lies Any thoughts? Liz x

Think the drug you are referring to is atomoxetine (Strattera). It's a non-stimulant, different class of drug which related to the SSRI antidepressants like prozac (fluoxetine) and seroxat (sertraline). It works differently gradually with the effect gradually building up in the child and apparently has been successfully used in many children as it doens't have the samse side effects of ritalin or related drugs. However there have been some reports recently of children on it having an increased in suicidal thoughts (this has been a concern with SSRIs in the under-18) so may not be the wonder drug it was initially thought to be HTH Liz x