Could my DC have aspergers?

[GoggotsandNanas]

I know it is weird to post here rather than seeking professional help, but I was never worried about her before- its her speech that worries me now , because other people can't (my family) can't understand her, and now I'm starting to view other behaviours differently- such as her fixations.

She is just over 3 and a half and tries to speak in really long sentences when she is excited by seeing someone. There will be a lot of garbled together words about what she'd recently been doing, emotional words, references to children's programmes, etc in the one 'sentence' - and the person will look flummoxed.

Another thing is her being quite particular about the way she likes certain things to be - for example being upset if people sit in the wrong chairs or use each-other's mobile phones, and other things like needing a particular cup or a particular spoon or wanting to put her clothes on in a particular order- but these fixations aren't constant and change over time.

She can start crying and shouting rather than asking properly for things sometimes (particularly when tired/hungry/etc). She has tantrums, but I've never really thought they were that bad, she just wants her way - I am able usually to get her to calm down and explain what she wants.

She is very sociable and excited about people, she can be quite dramatic and theatrical, but can be quite bossy with her friends and controlling about exactly how things should be set out (she gets annoyed if I move anything I tidy up, for example if I pick up a toy from the middle of the floor, when I walk back past it will be placed back in the same spot). She is incredibly affectionate with people - and I wonder if this is a sign, because she is even like this when people are awkward and uptight- she doesn't read the signals and gives them a hug.

She has advanced motor skills like colouring and writing letters very neatly, she started walking very early too. She can get very absorbed in drawing to the point where she won't hear me if I try to get her attention (TBF I am like this when I concentrate too).

She prefers to work things out rather than being taught- although is getting better now, so she doesn't do that thing of copying the correct word to get it right, which would help to improve her speech. Is this another sign?

Her nursery haven't said anything about it, they just tell me when they notice improvements in speech, which would suggest they are concerned she is slow.

Any thought appreciated

Thanks

[jojane]

It is hard to know where to draw the line and insist on an appropriate behaviour and when to let it slide, I have ds1 who is still in the process of assessment etc but lots of aspergers traits and then dd who doesn't at all and is the complete opposite as well as ds2 who is too young to know for sure but he seems pretty average so far. We try and treat them all the same and expect the same behaviour generally, manners etc but sometimes ds1 needs to managed in a different way to prevent a meltdown
. He hates birthday parties but we make him go to help his social skills and understanding, ir he will say yes to an invite and on the day refuse to go so we have to explain its rude to change your mind etc. he then will want to take a book (it was a dictionary on the weekend) but once we got there after all the moaning he then joined in with the water fight


I think that a dx shouldn't excuse behaviour but it does help you understand the behaviour and find ways to manage it and approach situations differently. Ie I can tell dd get your shoes on and she will do it straight away, but I have to give ds1 a 5 minute warning that he needs to get his shoes on so then when I then tell them both to get shoes on he's processed the request and prepared himself whereas before I would say get your shoes on when I actually wanted him to do it and then spend 5 min shouting at him to do it, which just wound both of us up.

My FiL shows a lot of aspergers traits but obviously being of a certain age never got diagnosed, he has to have a day to prepare himself for leaving the house etc, if we ring up to say can you babysit he hates it, of course he does it in an emergency but if not he will say no, I hadn't psyched myself up for going out today.

[Fuzzymum1]

We got a diagnosis for DS2 around 8yo - though we'd known for a while. I have always said that Asperger's is the reason for the way he behaves not an excuse for it - yes he has social issues (and if anything they are more obvious now he's 15) but I have always tried to ensure he uses the same manners and responds to people appropriately the same as I did with his older brother. We're just coming to the conclusion that DS3 who is 6 also has AS and are about to jump on the roller-coaster once again.

[Kleinzeit]

GoggotsandNanas It is tough to realise that our children's interesting and lovely quirks can be accompanied by real disabilities. Learning that there were things my son just couldn?t do and didn?t understand was very painful for me. It still is at times. But it didn?t make me value his strengths and his unusual abilities any less. DS is very persistent and does like to finish what he starts, which I admire because I tend to drop things! And if anything, it also made me value his ?ordinary? achievements more highly, because for my DS they weren?t ordinary.

[Goldmandra]

As an example I have personally witnessed: "Say thank you, Dean" .... silence from child, who moves to walk away....... Mum says "sorry about that, Dean has AS and doesn't like to socialise".
Having a child with no diagnosis, my response to the same behaviour would be (and was!!) to insist that the child stops moving away, and says thank you. Because I had no diagnosis for my DD, I made no allowances.

My DD's both have a diagnosis of AS. If I ask them to do something it is because I am confident that they are capable of doing it. If it is an unreasonable ask I don't.

What you witnessed wasn't the result of a diagnosis it was a parent making a mistake. We all make them whether our children have disabilities or not.

[Kleinzeit]

As an example I have personally witnessed: "Say thank you, Dean" .... silence from child, who moves to walk away....... Mum says "sorry about that, Dean has AS and doesn't like to socialise".
Having a child with no diagnosis, my response to the same behaviour would be (and was!!) to insist that the child stops moving away, and says thank you. Because I had no diagnosis for my DD, I made no allowances.

Well that?s a lovely bit of black-and-white thinking MumnGran? either you force a child to interact or you apologise for them and then give up. But there are a lot of other possibilities, which neither you nor your daughter seem to know about. And I?m not blaming you or her for not knowing, 30 years ago Asperger?s Syndrome was more or less unheard of and people didn't have much idea what to do.

The fact that Dean did not thank you on one occasion does not mean his mother is not teaching him how (or that she will not start teaching him when he is ready). Many children with Asperger?s respond poorly to immediate instructions like ?say thank you? due to processing delays and social panic. Some withdraw but others can get aggressive if pushed, you were lucky your DD didn't react like that. Instead those children need to be prepared in advance, using for example social stories to teach them when and how to thank people. It takes time to see a result.

Your daughter knows what it?s like to be raised without a diagnosis but she has never experienced what it?s like to be raised with one. She is only guessing.

[SummerRainIsADistantMemory]

Not having huge amounts of success ourselves atm so I'm definitely no expert hothead.

Some consequences work for a short while (losing his 3ds/no tv etc) but his interests never last long so finding something he cares about enough is tricky. I always try talking him down if he's spiralling into as dangerously hyper mood, OT did some work with him on keeping his 'engine' from being too high to 'just right'... Sometimes works, often not. He has some modulated listening music that seems to help him unwind, and wrapping him in a blanket helps if I catch him early enough, if he's too hyper though it has the opposite effect.

For the most part I seem to be on damage control though, if he's being violent I restrain him (arms wrapped around him from behind, trying to give him some deep sensory input as well as hold him back) but he's getting too big and strong now, he did serious damage to me the other night as he's figured out if he switches between throwing himself backwards and slamming me into the wall, headbutting, scratching and biting me he wears me out fairly quickly.

I let a lot of things slide and mostly just focus on the violence tbh, I know he can control it as he mostly presents as ADD in school but he can't seem to hold it together once he gets home.

[Goldmandra]

Then I feel guilty that by not getting her assessed I am being negligent because there are things I should be doing right now to give her all the tools she needs to get the most out of life.

If she has sufficient difficulties to get a diagnosis, chances are that there is support she could get which will make a difference to her future learning and development.

Take advantage of the fact that you could intervene early if necessary. DD1 was 12 before she was diagnosed and I would give an awful lot to be able to go back in time and get her support earlier in her life.

[SummerRainIsADistantMemory]

Fair enough mumngran we all have different perspectives when it comes to ASD and I certainly don't disagree with your point that a minority of carers do choose to use dx as an excuse not to try and improve behaviour rather than as the springboard to appropriate intervention it is intended for.

I know one family myself who decided CAMHS was 'a waste of time' and simply allow their ADHD son to run rampage, destroying property and injuring other children without repercussion as 'there's no point punishing him, he doesn't listen'

My own ds1 has ADHD and ASD and I know firsthand how difficult it is to get through to an child who's impulsive and doesn't understand consequences, but I keep trying, as do the vast majority of parents in my situation.

[coconut49]

Goggot - you said it's your DD's speech that is worrying you now. From your description it sounds like a problem with her spoken language skills. Apart from anything else, I would ask your GP or Health visitor to refer her to your local speech and language therapy service, who can do a full assessment. Is her understanding ok?

[MumnGran]

Summer I bow to those like yourself & DD who offer an articulate perspective on their own experience of AS, and I have absolute respect for anyone fighting for the best outcomes for their child ...wherever they are on the spectrum.

There seems to be a feeling that I am saying early diagnosis is wrong. I am not ..... I said that it can be as bad as late diagnosis. Of course it depends on the parents/carers etc However, it was never my intent to upset anyone already struggling with young children who have major issues. I have been through that mill, and have considerable empathy with each of the points you raise. I will always believe that some parents do allow far more leeway than they should because they feel a diagnosis explains it all, but am not sufficiently het up about it to start contradicting people who are currently coping with raising an ASD child. There is too much stress already.

..... 'nuff said?

[SummerRainIsADistantMemory]

Mumngran... I get where your dd is coming from to a certain degree as I'm an adult with very aspie traits. I only realised recently due to my sons' dx and researching ASD that my own behaviour stems from the same neurological issues.

I agree that being forced ti function up and not having allowances made has been a positive thing for me in certain respects. A few points I'd like to make though;

1 girls present very differently to boys, and it's been shown we are far better at learning expected social behaviours and mimicking appropriate responses. As a result girls often fly under the radar and go undiagnosed. It does not however negate the difficulties we experience and some understanding as a child would have improved my life massively.

2 there are massive differences in presentation of ASD between children. Some are very functional, others not so. It's a spectrum and as such there is no single approach which will suit every ASD child. Some can learn appropriate behaviour, some simply can't

3 dx does not by definition mean any allowances will be made. Some parents/teachers do excuse any and all bad behaviour as 'he can't help it', however most of us do not. There is autistic behaviour, and there is naughtiness. It is perfectly possible for a child with ASD to be naughty, have a tantrum, etc without it being ASD related... However it is part of parenting an ASD child to differentiate between 'bold' behaviour and ASD quirks which the child cannot prevent or control.

4 ASD is very often co-morbid with other conditions and dx can help with getting support for these, dyspraxia, dyslexia, hypermobility, spd, ADHD, to name but a few. Many of the issues faced by these children are physical as well as neurological, and require intervention

5 dx does not mean a child cannot, or should not, learn to function up.... In fact it is the entire reason for dx. We want our children to learn to function appropriately, many of the resources given to ASD children are to the sole aim of teaching better social, educational and behavioural functioning.

[fluffymindy]

Op, can I suggest you see a private Ed. Psychologist. My DD who is now 9 did not walk until she was 2.5 and talk until she was 4. She certainly does not have Aspergers but she probably is ASD. We are now in the process of moving her out of the state system and into the Steiner system as she needs something slower and more holistic with much smaller class sizes.

I have been banging on about something being a bit off with her since she was a tiny baby, she had a lack of connectedness iykwim. Sometimes she seem oblique to the world, dreamy and not engaged. She has little obsessions about things, the internet would be fatal for her I feel.... just my opinion. She has only a little social awareness, is very friendly and chatty with people but would not have the ability to remove herself from a threatening situation for instance.

Although I flagged this up early on we have had very little help - her issues are subtle and she has no behavioural issues at all - not even tantrums when smaller - this works against her of course because she is as good as gold at school and does not present a problem...... I am reticent to have her 'diagnosed' formally and that is why we had a report done privately to find out what she was good at and what she struggled with - it has helped us immensely to understand how she sees things and the best thing is we can choose whoo we reveal the information to, she does not enter into situations with a label on her and a set of expectations - for instance, most of the study on ASD is about boys (because there are more I guess) but actually ASD manifests itself in girls very differently and often more subtly.

If you do it privately then you can have control over it that is what I am saying and you can take advice from someone independent who can help without having a financial axe to grind or advising you in the context of what they know they have facilities wise or funding wise. It is seriously the best money we have ever spent - it turns out she is dyspraxic, had a major attention deficit and an auditory processing problem. She also has a normal IQ and a normal vocab but cannot access it readily because her short term memory is that of someone under 3 years old!

My feeling here is you are her Mother and you know best just be careful about getting her labelled and limiting people's expectations of her in the future.

[morethanpotatoprints]

MumnGran.

I see where you are coming from with your example of please and thank you, and I agree to a certain extent because we had a very late diagnosis with ds2. I was always as strict with him as I have been with the others and just thought he was hard work at times. However, I know if we had a diagnosis my ds2 would not have been bullied (by teachers) and I would have fought his corner. When I think my poor ds 2 life must have been horrible. Punished at school, bullied by teachers and his family agreeing with teachers that he was naughty.
Diagnosis really needs to be early to help the dc, but certainly allowances for different behaviour should fit the mould of acceptability of society. Otherwise we end up with dc who are socially unacceptable.

[MumnGran]

Poltergoose - I am sorry if my post presented as being in some way critical. It was certainly not my intent. I believe everyones' experience of having an AS child is different ..... as are the numerous levels at which a child may be affected. I always present my DD's spin because, for me, her eloquence about her own condition gave me such an amazing insight ....and I reiterate that the previous post is her own view. Do I agree with it? Yes, because in my limited experience I have seen the behaviour demonstrated. Does that mean it applies broadscale? - of course not. Which is why the comment is that early diagnosis can be as damaging as late.

We are lucky - the outcome for my DD has been mostly good, but it certainly was no picnic to raise her, and I still deal with her hiccups on a frequent basis. She was assessed as being far lower on the scale than any one would have expected. Still, I hope it does offer hope to other parents. The late teenage years were hellish, but there is life on the other side ....and many aspies are doing as my DD does, living productive lives with jobs and partners, and genuinely happy.

I remember the early years vividly, and send you every possible good wish. It is a long haul, but there is never a day when it isn't worth it

[MumnGran]

Damn ... I hit the post message before I had chance to change this ....sorry! I have actually just written to ask my DD if she would respond re ED.
If she is happy to, I will post her answer.
For me ...getting the view from an informed, intelligent adult with AS offers real insight

[MumnGran]

I can only feedback what my DD tells me.She is my sole wisdom on the subject, because she is the one who sees it from the "inside looking out", and as she is in her 30's and highly articulate, I trust what she tells me. Perhaps I should ask her to come on here, as I hate routing thoughts as a third party ....but she will never be a mum (by her own choice - luckily she has a partner who agrees).

I think there are two issues at stake with early diagnosis and parents focus on school where I expect the learning outcomes may indeed be better if extra support is in place for learning issues. My DD tends not to focus on that area because she experienced issues with bullying at (mainstream) school, but never with learning. She was very bright, annoyed by teachers repeating the same ground, as she "got it" the first time .... so she sat at the back and read the textbooks to occupy herself. She only had 2 meltdowns in the school environment, and aced every exam she ever took. But I absolutely accept that this is not the common experience.

Her view about early diagnosis is rooted in how Aspie (her preferred term, not mine) children grow up to function in a non-Aspie world. She firmly believes that as soon as parents (and teachers?) have a diagnosis they suspend the rules they would normally apply to raising healthy happy polite individuals.
As an example I have personally witnessed: "Say thank you, Dean" .... silence from child, who moves to walk away....... Mum says "sorry about that, Dean has AS and doesn't like to socialise".
Having a child with no diagnosis, my response to the same behaviour would be (and was!!) to insist that the child stops moving away, and says thank you. Because I had no diagnosis for my DD, I made no allowances.

Now for years, I felt very guilty about failing as a parent because patently she did have all the usual AS traits, and I thought I just hadn't parented her well enough. Diagnosis changed that .....but to this day my DD tells everyone who asks, that she learned to "function up" only because she was raised with normal expectation .....applied to her exactly as applied to sibling/cousins etc.

If someone had told me that my DD had AS when she was 5, I would have heaved a sigh of relief that I had an answer, that the behavioural issues weren't my fault .......and handled her differently ever after. I suspect just about every parent of a child with ASD does the same. Its a normal response.
Whether it is good for the childs long term ability to cope in a non-aspie world ...... I only have my daughters input for guidance.

[MumnGran]

I am lucky to have a DD who chased down her own AS diagnosis as an adult (Aspergers wasn't even on the diagnostic register when she was at school!), and turned all of her obsessive impulses towards finding out all she could, and now helping out wherever she can with mothers who have AS children, or those who are struggling with diagnostic routes. She has also been involved with the Cambs research.

Her view, and in her own words, is that an early diagnosis of functioning AS can be as damaging as no diagnosis, because once a child is diagnosed .... everyone starts to make allowances and bend normal rules for the child. She views this as counter-productive, and believes her own ability to "function up" is rooted in growing up with clear boundaries that were as much in place for her as for other children in the family. She learned acceptable social behaviour because it was an absolute requirement....and AS do best with clear set rules to work with.

Since diagnosis, she and I have explored many many areas of her functioning ....including how she thinks, and how she can apply that thinking to change her behaviours to be a closer fit for societal expectation.

It has been an amazing journey, and I would not change her - or the way her AS has mapped out - for the world . She has always "marched to a different drummer".

[tabulahrasa]

'Part of me feels hesitant to seek help in case she is diagnosed as AS. I really enjoy her quirks and active imagination -its one of the pleasures of parenthood for me. I'd might really lose the enjoyment of her fixations if I started viewing them as part a condition that might cause her difficultly or distress as she gets older...'

You won't lose that, honestly - my DS has AS and it's so intertwined with his personality that I don't think of it like that at all, he just is who he is and that includes enjoying the good things about him at the same time as hating the things that cause him difficulty.

[MumnGran]

Poltergoose - I believe this has changed recently and is all now classed as Autism Spectrum Disorder. Not a good thing in my opinion, or that of my AS daughter who views it as another reason that people will see those with AS as being unable to cope with life, because they hear autism and think that total withdrawal is the norm. Labels have a lot of power

[ChazDingle]

my DS has just turned 3 and he is being looked at (imformally at the minute) for aspergers. Theres a thread running on gifted and talented board called 'what was your gifted child like when they were 2-3' that has some really useful comments from peoples whose kids have AS. Not sure how to link but it will be easy to find as that board doesn't move very fast so will be near the top