Worried/Aspergers?

[hmb]

I am a little worried about Ds, and I was hoping that Mumsnet might be able to give me some advice. Ds is almost 3. He has some problems with speech development, but it putting together 4-5 word sentences, and 2-3 related sentences. He points at things that interest him, and shouts look! His gross motor skills are fine, he runs, jumps, kicks a ball and climbs very well. He is not interested in colouring, but can hold a pen and scribble. He taks part in imaginative play, but likes to play alone. He is very, very affectionate, and loves to hug, cuddle and be kissed, and he makes excellent eye contact. So far so good. However, he has mild obsessions about trains, cars and planes (these seem to be getting better), eats his food in order, has a massive tantrum in the shoe shop or having his hair cut, sometimes finds it difficult to take part in activities at nursery, doesn't like change (but will go along with it), and likes a routine.

His nursery has flagged up the language problems as a possible reason for his frustration and tantrums, and we are working on them, with some success. However, I am worried that there might be something else that is a problemie the milder side of aspergers. I am on my own at the moment, and all my worries get blown up, out of proportion. I'd be greatful for any feedback

Thanks

What causes this problem? Autism seems to be so much more common than it used to be.

Also found this -

What causes this problem? Autism seems to be so much more common than it used to be.

Researchers are not sure, but it seems likely at this time that many cases are caused by a genetic predisposition or by environmental toxicity, combined with some kind of triggering event that stresses the immune system, such as a vaccination or virus. In several cases, prolonged use of antibiotics seems to have contributed to the onset of the disorder."

lots of info about diet at www.autismdiet.com/begfaq.html

Our posts crossed jimjams. I think all parents feel guilty but in this area seems like evensome of the experts don't know what is doing on. I am interested in causes mainly due to the implications involved in vaccinanations and how that would affect others and of course for hte sake of dd.

sorry bit rushed with children just now.

Oh yes I'm with you there Eulalia- and I started really looking into the vaccination link when ds2 was born (although now ds1 is due boosters I would have been doing it anyway).

A good general book on vaccinations is "The vaccination Bible" published by what doctors don't tell you.

The ARU has some good links on its page. I know that they think they can be a factor in some children- but that there are other factors as well. in a recent conference other possible factors besides vaccinations that were suggested included pesticides, dietary changes, gut flora changes, plasticisers, drugs residues etc etc.

There was some interesting stuff published this week about Gulf War Syndrome and the link to vaccination- I know the ARU has done some research into this as well - the gulf war vets with GW syndrome have the IAG in their urine as well- same as the majority of autistic kiddies (my ds1 has it). Question (in my mid anyway) is was it there already (and therefore does that indicate a susceptibility to immune system problems) or did the vaccinations cause it.

IAG seems to indicate a leaky gut.

The research is incredibly interesting- but also very complex as it involves so many systems. Once you get onto the sulphation system it gets even more confusing (Thats Rosemary Waring at the University of Birmingham if you want to look that side of it up).

And of course we get left to wade through all this trying to make the "right" decisions. Nightmare! I think all you can do is make the decision you feel the most comfortable with. I don't think you can ever be certain you made the right one!

Hope all goes well on Tuesday.

Your son sounds fab, Maryz. I'm so glad he is thriving. IMO you were given information so simplified as to be possibly inaccurate at his diagnosis. I think that some people with aspergers & autism can empathise just fine, maybe even more accutely- and with more anxiety to get it right!- than neuro typical people but it is possible that they use a different part of the brain to achieve this and that they are therefore slower to develop such skills than most other people.

Eulalia- best of luck with the diagnosis process with your boy.

Hear hear scrummy- what do you do btw? My ASD son certainly empathises. Mind you he also teases, has a sense of humour- and his "reward" for getting things right (set by portage I mean- so official reward) is praise! And supposedly they're not meant to care what others think. He's also incredibly affectionate.

So much rubbish gets written about autism! I've also been told my son wasn't trying to talk (he was/is all the time- just incomprehensibly), that he couldn't possibly be playing with little people- he was and when I pointed him out doing it to this professional she just said "hmph". In fact the negativity of these so called professionals just drives me to distraction!

Been doing some reading - I think with ds we are looking at semantic pragmatic disorder - so much of what I've read has rung true. Still keeping an open mind of course. Had quite a stressful w/e with ds. Today he had a screaming fit in Asda. A lot of it was because he was tired. Yesterday he found a hand mixer in the drawer - a thing with two whisks and a handle and became very obsessed with it. The trouble his he used it to mix his tomato soup and it went everywhere - at least I can laugh about it now!

jmb1964 - how is/was your son's speech? From what I've read it seems (put in the crudest terms) that SPD children have more problems with speech and understanding but are OK socially. AS children tend to be OK with speech but socially are less able.

However all these disorders and syndromes overlap. I found a good paper - a bit out of date but it uses a Venn diagram to show the overlap which I felt was more accurate than the idea of a spectrum.

"In talking of an autistic continuum, we imply a single dimension, in which a condition such as Asperger's syndrome constitutes a milder form of the same underlying disorder that is seen in autism. However, clinical accounts suggest that conditions resembling autism do not differ just in terms of severity, but also in pattern of symptoms. Thus the label Asperger's syndrome is typically applied to clumsy children with circumscribed interests, whose early language development is not delayed, and who may have a verbal IQ well above performance IQ (Wing, 1981). In contrast, language-impaired children fitting the picture of semantic-pragmatic disorder typically first present with delayed language development and evident comprehension problems, and have a marked IQ discrepancy in favour of performance IQ. To represent this situation adequately, we need not one but two dimensions, as shown in Figure 1.
The value of thinking in terms of a two-dimensional continuum of disorder is that it allows us to retain the terminology and definitions appertaining to the core syndrome, while appreciating relationships with other milder types of disorder (Wing, 1986). It also encourages us to develop a quantitative approach to evaluation of symptoms."

You can find the full text here Autism, Asperger's syndrome and semantic-pragmatic disorder: Where are the boundaries?

I'll be back on Tuesday with an update.

They do all overlap Eulalia- and the dx can chance. FWIW I think my son will eventually end up with either a high funtioning autism or semantic prangmatic disorder dx (currently ASD).

I know someone who talks about the autistic landscape- and imagine it as being 3D. I think that is helpful. All the ASD children I know are very different from each other depending on where their strengths and weaknesses lie. The range from fully conversational to non-verbal and fomr very sociable to totally hating children (and I mean hating!)

Remember it's just a defecit in certain areas- not an absence. Also sometimes dx can be given for political reasons. So for example in your area a dx of semantic pragmatic disorder may not get you much help (or any) whilst a dx of "communication disorder on the autistic spectrum" may get you buckets of help. The clinical psychologist said it was slighty daft dxing ds1 at 3 as he could change so much but she said he needed a label - and that label needed to be autism to access services.

Hello all - end of what has felt like a v long weekend. I've been finding it hard to get my head round the idea of having an actual diagnosos, and so far have hardly told anyone. Dh is not 100% convinced, but that might be because he shares a lot of the traits anyway. I got all upset after ds1 had a big tantrum this eve, wondering if I was going to lose sight of all that makes him my adored son as he gets swallowed up by a diagnosis. But he realisd I was upset and came over and stroked me - there is hope, and lots of it!
Eulalia - the Wing referece looks really good, thanks. Ds1's speech was if anything forward, he had clear words before he was 1, but is still a bit indistict and he lisps. The SALT on Friday said she found him quite pedantic eg 'that's not a bird, it's an owl.' and sometimes he used funny voices when answering her questions (this is 'prosody' I think). He has a huge vocabulary and loves using big long words. I think his problems are predominantly social, dealing with standing in line at school, waiting his turn etc.
I think of all these conditions as a load of big squishy balls sort of bulging into each other, and into the huge 'normal' sphere as well - IYKWIM!
Have been reading Tony Attwood's book about Aspergers over the weekend - it's very good.
Tomorrow I will have to talk to the school about where we go next. I don't think they will be very surprised, and I think there are a few other children in the school with similar problems.

jmb- try to see the diagnosis as a "signpost" rather than a label. It can direct you to the sorts of things that may help your son, without actually changing him.

The Aut-UK mailing list is good as well- some adults with Aspergers post on there- as well as parents of children across the entire spectrum and a few professionals as well. I can dig out the address if you want (it's just started again after a brief perios of change so the web pages have changed).

good luck with the school. Having a diagnosis will make gainaing a statement easier in the future if you decide he needs it (depends on the school- if they're good he may not).

Getting the diagnosis is hard- but life does become a bit easier with it.

Thanks Jimjams - how do you manage to be so positive? I like the signpost idea! The head of the junior school actually sounded quite pleased, as the diagnosis seems to mean P will get his full-time one-one support next year, and what child wouldn't benefit from that? The educational psychologist will be in touch with us soon , apparently, and I've got a number for the Lothian Autistic Society now, so I'm feeling a bit less abandoned! Have a good week!
Eulalia - good luck with the assessment tomorrow!

I'm not really positive jmb- I spend too much time sobbing for that

Someone else told me about the signpost- I thought it was good. Also I spend quite a lot of time talking (via email mainly) to adults with autism/Aspergers- and it makes you realise that yes their lives are different, but they are equally valid, and lots of them do go onto get married/have kids etc - all the things you imagine have gone out of the window with a dx.

Also I have stopped reading anything negative and only read positive book. Autism- the 8th colour of tha rainbow by Florica Stone is a great example. Certainly worth reading if your son has any language difficulties or sensory issues.

Also I think the pre-dx days were better- not being sure what was wrong. With a dx you can find support - without it you're left high and dry really.

I'm not positive all the time though- I don't think anyone is. Luckily I have close friends with ASD children and I spend a lot of time moaning to them. Without them I think I would regularly explode. So yes I'd recommend getting in contact with support groups. Just having friends who really understand to ring makes all the difference.

Glad to hear that you are getting things organised jmb. Yes I also feel you are very positive jimjams and as you say best to look on the bright side (as Monty Python said).

The assessment went well today. Dh was able to come with me which helped and also my parents took dd which meant less distractions. We weren?t too far into the proceedings when the doctor (somewhat tentatively) said that ds was on the autistic spectrum (high functioning). I think she was worried in case I was going to react badly and burst into tears. However I was obviously expecting this.

Ds was excellent with the doctor assessing him and sat at the table straight away although didn?t speak at all (and only a little later on in a different room). He scored very highly on some of the tests, eg colour and shape recognition and built a huge Tower of Hanoi with little bricks, but poorly on others, eg wasn?t able to draw a cross. He?s not good at drawing anyway although can hold a pencil very well. Speech is obviously poor and he will need to see a therapist and psychologist (all to be sorted out in due course). Socially they felt he was good and will be able to attend his nursery in August although may need auxiliary support. The doctor was positive about the future and feels that he will eventually grow into a normal child (albeit a bit eccentric perhaps) so on that account I feel more relived.

I feel now that I need to know how to cope on a day to day level and unfortunately we didn?t have time to discuss this. At least now I know I have a legitimate reason for feeling so stressed some days but I do need to work out an appropriate strategy for everyday events. For the moment I just need this to all sink in for a bit. Dh has tomorrow off too and is helping me at the Under 5?s group but I may consider withdrawing him from this (he?s only got about 6 weeks left to go anyway) if he?s not going to behave suitably with younger children.

I think I may have to get some sort of ?dog-tag? for him as the running away is bothering me. I don?t know what to do about this as he is incredibly fast and I can?t keep up, and also I sometimes have to abandon dd in pushchair to get him which is not ideal. Any ideas about how to deal with this one?

And the friend ? well she got back in touch but didn?t mention the problem at all. I?ve decided to just wipe the slate clean but we?ll just keep it to email for the moment as I don?t want ds being round her boy.

Thanks again for the support and encouragement ? it makes all the difference.

Apologies it wasn't a Tower of Hanoi - that was dh getting it wrong. It was just a simple stack of bricks.

This is such a moving thread. I don't know if this course would be of any interest to any of you:
www.gla.ac.uk/departments/humannutrition/course/courses/Leaflet.pdf
Our next-door neighbour is involved (you know, Jimjams!); jmb, I noticed you mentioned Lothian so it's fairly local for you, maybe (although perhaps too soon)?

Eulalia - you mean you didn't burst into tears? Well done! I did, but it was a bit difficult having P there with me, and the consultant handed me the box of tissues in a 'pull yourself together' sort of way.
You will feel very upside down for a while I expect - however much you know something yourself it comes as a shock when someone else says it, doesn't it? I haven't yet found it easy to talk to other people about it, but I suppose there's no big hurry. My sister was here at the weekend, which was fine, but now we have my elderly mother, and I just can't face talking to her about it all at the moment.
Tamum - thanks for the link - it looks interesting. Does anyone know anything about Vitamin B12 in this context? Our consultant said she thought that and fish oil were the most proven things so far.

It is always a shock- even if you are expecting it. We went home and sobbed. However with a diagnosis you kind of have a ticket into support groups and they make a huge difference. Just having other people who understand- and also other people who are dealing with the same professionals as you. You discover it's not just you that thinks the ed psych/SALT/paed/whoever is a complete idiot!

Re running away. Tricky one! For a long time I had a 3 wheeler double buggy. I could push that with obe hand whilst gripping ds1 with free hand. Then if he tried to run away I could strap him in the free seat. Gradually I had to strap him in less and now I don't bother with the double buggy- I have a 3 wheeled single buggy (again can push with one hand) and I grip ds2 with the other. I used to use reins as well. I still wouldn't trust him to walk next to a buggy.

Fish oils and vit B12- wow your consultant sounds switched on. We use both- I give Biocare vitamin B complex every morning in ds1's drink. And fish oils (either Efalex- which I get in boots- or ProEfa which I order from the states- only because it's meant to be the best for verbal dyspraxia) every morning on ds1's toast with loads of honey on top. Fish oils have made the hugest difference. B12? Not so sure- I continue to give it because ds1's diet is very restrictive and he doesn't go near many B vits. I have heard it works well when taken with magnesium- but haven't tried that yet- I will do though!

Good luck to both of you. It does take a while for the diagnosis to sink in. I would recommend the aut-uk mailing list- it gives loads of good advice. I will try and dig out their new details. It dies produce lots of emails, but if I get too far behind I just do a mass delete. It covers the whole spectrum as well.

otherwise if you're finding the idea of autism hard to accept I would recommend Florica Stone's, book- Autism the 8th colour of the rainbow hope-tlc.autistics.org/ link to website- the book is cheaper there. She has self published this book and it is incredibly positive. It really helps understand why they may be behaving strangely- it's great. Expensive but worth it! She's also lovely and is quick to send the book and will give advice via email.

Sorry to hear it has ended the way you expected, but it does get better once the diagnosis has been given.

Eulalia, just catching up on your news. Good to hear you are sounding so positive and hope that you can now get the help that you need for your DS.

Jimjams you are wonderful and your DS1 sounds wonderful too. You have certainly dispelled some of the myths surrounding autism that I have heard I would have loved to have spoken to someone like you when we were worried about our DS1.

Thanks Demented for remembering me.

I still feel a bit unreal about it all. I did lie awake for a little while last night thinking about things. However I am just getting on with it. The Playgroup have already said that they can get extra funding for some one-one support which is great. I've got some phone numbers of local support groups and am getting some leaflets.

I feel more relieved now and that we can just get on with progressing forward. Also ds seems to have improved this week with his speech.

jimjams - have been using a double buggy similar to yours but only if we go into the city centre. If we go to the nearest town I let him walk beside dd's pushchair and he's fairly good. I don't know how long I can use the double buggy though (because of his weight). It is more if we are in an open area like a park or a cafe or something that he just wanders off. I am hoping that he'll grow out of this.

Anwya got to go as he is climbing onto my lap ... I will probably have a million questions in due course. I have found a woman living nearby who has an autistic daughter and will see her soon and she has lots of books I can borrow.

By the way - can we start a new thread somewhere - this one is getting rather long.

I am new to Mumsnet and have been reading the threads on ASpergers & Semantic Pragmatic Disorder
My 7y-o DD has been having problems for a while but i couldnt put my finger on what it was even when she started school. Although it did get worse from that time. She is now in grade 2 and has had the worst year of her little life this year. In April after trying without success to get her teacher to talk to me i went to the headmistrss who referred me to the school psychologist.finally ,someone who would listen!!
After counselling DD she did cognitive testing on her and then referred her to a speech pathologist for further testing.both assessments suggest that DD has an autistic spectrum disorder involving SPD /Aspergers and is also assessed in the gifted range in some areas but still has to be assessed by the peadiatric psychiatrist before the school can become any more involved. i have spoken to her teacher who has pooh-poohed the idea saying that she is just"arty and a bit eccentric". She hates her teacher with a passion!!! I need moral support and some suggestions on how to explain to DD just what is going on without her thinking she is stupid or crazy.DH accepts in theory that she has a problem but finds it hard in practice to be patient-but he is learning.
HELP,HELP,HELP cheers from Besage

besage I cant really help, but I know others are very knowledgable in these areas - so you will get some help

Just to say my friends son has aspergers and he wasnt diagnosed til 11 and I have heard a late diagnosis of aspergers is quite common. She was brushed off by professionals because they said her son had no problems he just had a unique personality!!

Besage- can't post now but will later- search for threads posted by JIMJAMS,DAVROS and MARYZ...a few of my 'FAVOURITES'.My posts are long but may be useful too as i've got a 7yr old boy who the school are reluctant to accept is Autistic...Take care of yourself....you've found an excellent 'moral' booster here ....it's my lifesaver!

besage, sounds like maryz and Mrsf have already steered you in the right direction. Dads do often find it hard to accept dx/problem because they have emotions about the issue, unlike the stupid teacher who just feels threatened. Teachers can be so resistant to anything going on in their classroom that they don't have control over. You must not be put off by her, seeing the psychologist is a very good step and you must not be undermined or diverted by the teacher, "well meaning" relatives/friends etc. Suppose at the end of the process it is decided that she doesn't have as severe problems as you might now be worried about, well whoopee, better to find out than ignore potential problems. You keep going, you are doing the right thing and you are obviously putting your daughter's needs first. BTW, not all teachers, friends or relatives are trouble and supportive ones who listen to you are wonderful but sadly fairly rare.

agree with everything already said!