Lyndalou
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Posts posted by Lyndalou
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Hi Bristolbloke and welcome to the forum
It sounds like for the most part you are happy with your life and that if you are indeed on the autistic spectrum then you have managed to learn and compensate very well. What you might want to ask yourself is what you would like to achieve from gaining a diagnosis. Some people might find the diagnosis can lead to some adaptations being made for them in the workplace but just 'knowing' can mean that you can make adaptations in your everyday life to make life easier. For instance, many (if not most) people on the autistic spectrum have sensory difficulties along with the more 'recognisable' difficulties and it can be helpful to figure out what those are.
Good luck with the GP. You may find the info on the NAS website about approaching your GP helpfu.
Lynda
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What is your MP saying they can do for you? Are they confident they can help and are you?
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I think that death is a pretty difficult concept for kids to get their heads around. I can remember being very upset about the family dog dying when I was about 6 but then my Gran died the following year and I don't remember understanding it very well. My thought is that having animals can be a good 'introduction' to life and death, even if it is just explained in the simplest terms at first. It's part of the reason I just decided to get a hamster; so my children can care for her and when the time comes they can say 'Goodbye'. I think the fact your lad is speaking about his Gran Sesley shows that the advert has triggered memories of his granny and I think this kind of discussion should be encouraged and is very healthy.
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That's great to hear Smiley. It is normal to feel frustrated if you are a bit 'stuck' but hopefully you can find a way forward with the help of your family and the professionals.
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There's a saying that goes 'Healthy body, healthy mind'. It's not quite as simple as that in practice but the meaning of the saying is that if you give your body the nutrients it needs, are active and sleep as much as you need for your body and mind to recuperate after the stresses and strains of the day then you will be able to cope better and have a healthier mindset than if you don't treat your body with respect and/or burn the candle at both ends (get too little sleep).
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Smiley
It can be very hard to work through deep-seated and difficult issues. It does take a lot of effort and commitment to make progress and make things 'better' but it can be a slow process and therefore can be disheartening. As has been said to you many times, work through these problems with the people who can help you in the 'real' world and tell them what the problems are so they can help you the best way they can. You need to take on board advice given (obviously you can discard what you don't think is helpful) and try to implement that advice. It can be painful and upsetting but if you do things like look after yourself physically and get lots of rest then that will help too.
Lynda
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I liked soft furnishings, as child parents had velvet curtains in lounge and I liked the way you could rub with hand and it altered way pile sat-like a hoover on deep pile carpet.
Oh, what bliss. Remember doing this a lot when I was little.... I loved making lines in fabrics with a pile and skimming my hands over the top!
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Yes. Most people don't realize the effort (and courage) that is often necessary for ASD children to compete with "mainstream" pupils.
Even when they are better than their peers in some areas, they are often overlooked.
For example, last year one of my P7 ASD pupils had a gift for drawing. Aeroplanes, cars, factories, cities, he could draw them from memory with all their intricacies and all proportionate and beautifully coloured. His work overflowed onto the outside walls of my class and all down the corridor. The other pupils were overawed at his talent. Many of them attempted to copy his pictures. His work was even displayed at an exhibition in Edinburgh University for a time. I was sure there would be no question of his winning the school Art prize at the end of the year. And so I went along to the ceremony with my camera to record it. Did he win? No. A nice little girl won, one of those who are good at everything. Her work was good, but it didn't stand out in any way. When I asked why my pupil had not won, I was told that his gift was too specific, too narrow, only confined to machines and buildings!
This makes me feel very very sad and I'm glad you are trying to do something to recognise the achievement of your children. However, I must admit that I would want to challenge the reasons given as to why this child could be overlooked in such an obvious way and for such a trivial reason in my opinion. He sounds like an incredibly gifted artist.
I won the 4th Year Art Prize at secondary and it's one of my best memories and I felt so proud of my achievement. I still remember the strange look on the teacher's face who gave me my prize however. Now I know that I should have chosen an art book for my prize but I had picked a contemporary (slightly racy) novel instead, lol.
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bed32 - the reason for wanting an official diagnosis is firstly to access services and help. As I said, because she hasnt been given one therefore there is no help offered, it is just goodbye. I have requested a statutory assessment and that the school ask the educational psychologist to review her. Another reason I would have liked some sort of 'label' for her difficulties was to help explain her problems to her. To be able to say you're having these difficulties because.... I thought that would have been useful to her in dealing with things like her friends no longer wanting to visit, that she is not achieving the same as everyone else in school, that she finds it difficult in noisy situations, etc. I dont know whether that would actually help her but had assumed it would, as she would be able to think to herself, and perhaps when older even explain to others, I am the way I am because....
I wish I could say that there is an easy answer to your question but I know and you probably know that it can be a lot more difficult to gain an ASD diagnosis for a girl as opposed to a boy. There are professionals who recognise that girls often 'present' differently to boys with more 'subtle' symptoms but many professionals/teachers equate this to there not being much of a problem when it actual fact all it means is that the problems are not always outwardly manifested and even if they are they are not taken particularly seriously. Also, it is generally believed that girls can tend to start struggling more obviously at the onset of puberty. Speaking as a woman who struggled all through my teens (and didn't tell anyone apart from God), I would say trust your instincts that your little girl needs the help you describe. Half the battle is that you see the problems she is having. My mum laughed when I plucked all my eyelashes out at the age of 12 as I was in so much distress!
There is a lot of anecdotal evidence to suggest that many girls with ASD actually have a very active (in fact completely vivid) imagination because it is their way of escaping the emotional and social turmoil they face. However, it is not officially recognised in any diagnostic criteria and this is partly why the diagnostic criteria is currently under scrutiny with regards to how applicable it is to girls (see under Girls and Women on the NAS website) and there is a lot of debate as to how many girls the diagnostic criteria excludes unfairly.
I would suggest that you would only concentrate therefore on the problems your daughter has which would be observable in both boys and girls on the spectrum and from the list you have produced I would say there are a fair number. I would concentrate on demonstrating your daughter's lack of SOCIAL imagination rather than highlighting her fantasy life and provide evidence as to how she struggles with friendships and with specific areas of academic learning.
Lynda
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I looked up the definition of this word to try to find out exactly what you may mean by your question and there seemed to be 2 meanings: the attribution of religious or mystical significance to an inanimate object or a course of action to which one has an irrational and excessive commitment. Which one do you mean?
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I'll be in touch shortly Sidious
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Hi Adrian and welcome to the forum
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I absolutely understand your frustration and upset Dekaspace having lived in lodgings which were far from perfect with dodgy landlords. I once stayed in a shared house on the top floor where although we had a 'flat' we had no front door so the landlord wandered in when he felt like it. We were never able to use the living room as it was actually a room for all the junk he'd accumulated over 50 years or so...like a crammed antiques shop...and the rest...
Do you have any documentary evidence of all the problems you had during your tenancy? Did you ever go to CAB or seek advice elsewhere? Do you have receipts or bank statements showing you have made all your rent payments? The reason I am asking is that if you were to contact a tenants rights association, they might need this kind of evidence to assist you. I really don't know how it works in actuality re. getting any of your money back or getting him to back off on asking for any more money from you but I do know that tenants rights were tightened recently - eg. having briefly looked up a website about tenants rights it states that your landlord should have placed your deposit in an Approved Tenancy Deposit Protection Scheme in case of any dispute about returning the total amount of deposit! Not just, you are not getting it and that's the end of it!
I would suggest you look on the various sites about tenants rights - the Government one is top of the list - and get an appointment with CAB asap. The site I looked on suggested you speak to a Tenancy Relations officer so it might be worth calling the council too?
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This sounds like a really well thought through proposition. If it can raise awareness at the same time as provide assistance to those who need it then more's the better I say! Would you be considering monthly donations in future as well as one-offs? I give a small donation to Dogs Trust on a monthly basis as I do to a couple of other (human) charities close to my heart and I would definitely consider this.
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Sidious
What a brilliantly proactive thing to do!
Will donations be primarily for start-up costs/advertising etc?
Lynda
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I can assure you Susie that at 5 yrs old my son can now make excellent eye contact. It is one of the reasons that I believed that the Paediatrian was actually wrong about an ASD diagnosis in my son's case although back when he was just over 2 yrs old his eye contact was quite limited; mostly fleeting or he looked at us sideways. His eye gaze over time became longer and more direct (too direct) although there are times that he still won't make eye contact when he wants something and instead tugs on me or makes odd noises.
The actual 'symptom' regarding eye contact is 'inappropriate' eye contact. That can mean too little or too much. So the child might avoid eye gaze, make fleeting eye contact or stare or not look at you when you would expect them to. I can remember clearly as a child flicking my eyes back and forward between the eyeballs of the person I was looking at as I couldn't figure out how to look at them. I was always being told to look at someone when they were speaking to me so I tried my best to do it and started looking at a point between their eyes and I often went cockeyed! Part of the problem was that I was unsure how close to stand to another person - it's easier to stand further away!
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Hi Bed32
My son's school review took place today and at it his 'perfectionist' tendencies were discussed. It turned out that the school and myself are doing similar things with regards to tackling his outbursts or upset when he doesn't do things exactly as he would want or they don't turn out as he has planned. When I do something 'wrong' at home, I might make a big deal of it by saying something like 'Silly Mummy' or 'Mummy did it wrong, oh dear' or 'Mummy needs to try again' etc to demonstrate that when he isn't happy with something he has done that it's ok - he can try again. The teachers are doing the same thing like putting random things on their heads and saying 'Look, I've got a hat on' and then he says 'No, it's not!' and they say 'Oops! I thought it was a hat'. Maybe this is a daft example but basically it's about showing him that other people make mistakes...
Lynda
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Apart from the different behaviours between school and home (which is quite usual in a child with ASD), what are the reasons they are giving you as to why they feel that an ASD diagnosis is inappropriate? They can't just say this is what they think without giving some explanation.
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Welcome as well from me
Awesome post #2 Lyndalou, although all are good. Female AS is a topic very close to my heart ... more needs to be done, more will be done, but it'll take time!
Shucks. I do try
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Well done on your venture and thanks for posting. My son did some horse riding at the age of 3. We did it to try to get on top of some of his sensory difficulties and he did enjoy riding but not enough to carry on after a break but it's not for everyone! It was very helpful for him however in starting to learn to tolerate things he hadn't done up until that point so I would encourage anyone to give it a go.
Let us know how things go and stick around to read the posts
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Stuffed has posted here about his current situation on another thread.
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Could you appeal to his sense of logic at all Bed32? When he says things like 'I will always win' could you explain to him that this is not an entirely accurate statement by using examples of when you have been successful in something or instances where other people have 'won' (got better grades at school or achieved something he hasn't)? I'm not in any way suggesting you attack his self-esteem but just that you explain to him that it is impossible to win all the time and at everything.
Also, why does he have to win? As a child I never liked to be 'beaten', whether it was a spelling test or singing the loudest or winning a running race. Truth be told, I'm still the same. However, I was always compliant and always followed the rules, unlike your son. I challenge authority much more as an adult. Perhaps his rules are much more internal ones where everyone else goes against those rules and if he sets the rules then he is likely to always 'win' in his own mind?
If he likes to win but when he goes to school against his will he does nothing all day, how can he expect to keep 'winning' if he doesn't do the lessons? 'Winners' need to learn in order to keep up their game etc.... Maybe he needs examples of people and what they have had to do in order to achieve what they want to in life. Even if gaming is his principal obsession, if he wants to work in computing in the future then logically he needs to learn other things and do what other people want (at school, uni and the workplace) in order to succeed and even if he says he'll be an entrepreneur and doesn't need all those things, how does he logically expect to get anywhere if he can't do all the things he is required to do to run a business?
I know he's only 9 but he sounds like a bright boy and he might start to 'get' that he's actually harming his present and future chances if he continues to fight you at every turn?
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There are some excellent books out there, written by adults on the spectrum. One way my life has changed for the better is that now I understand my sensory difficulties much better. In fact, again it just didn't occur to me that it was in any way unusual to hear tiny noises or to freak out when my feet get wet (in shoes) or I get very upset when the wind whips my hair. I just thought I was very short-tempered and a bit irrational! My mum can sniff out (quite literally) almost imperceptible smells so I thought I just got my keen sense of smell from her and it again was quite normal. It turns out that I have quite marked sensory difficulties (confirmed by an OT) but without me investigating it I had no idea! It has made some positive difference in controlling my anxiety in these areas and as some of my son's sensory difficulties correspond with mine somewhat it means I can be aware of things in the environment which might or does affect him - if I didn't know that I know my life would be more stressful than it is. Also, just knowing the differences in how a person with AS views the world (not that I didn't know I had certain viewpoints and ways of thinking before) from so-called NT thinking has helped me pinpoint all the various difficulties I've had in my personal and worklife.
Good luck with your trip to the GP.
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Hi Bed32
I hope this comes over the way I intend it to first of all. I feel there is a big difference between a child with ASD being resistant to doing something due to the fear it may engender (and by that I mean, fear of what they are requested to do because they have ''performance anxiety' or of the activity being frightening in and of itself) and not wanting to do something because they are requested to do it and they don't want to do it and they are able to manipulate situations to ensure they don't.
I am aware that PDA is now considered a stand-alone diagnosis in it's own right (and I'm not going to say I know a great deal about it because I don't!) and I acknowledge that there must be a subgroup of children to which this diagnosis MIGHT apply. However, I sit on the fence as to whether it should be applied to the majority of children who exhibit this kind of behaviour.
I believe children with ASD can manipulate situations to their own end although fear can be a dominant factor in the reason for this behaviour. I was able to quietly steer things in the direction I wanted things to be as an older child/teenager and could be quite underhand. The only difference I see between what you are describing and what I am describing is that your son is using more overt means and I used more covert means to get what I wanted. At 5 my son already is quite vocal in remonstrating against what he doesn't want to do. At the moment he makes a lot of noise about being encouraged to dress and undress himself. There is often a lot of lying about on the floor, procrastinating, screaming, huffing and the rest. The school agrees with me that he is capable but just doesn't want to do it as he'd like the easiest option; ie. me doing it for him. He just doesn't get that option. Unless he is very tired and/or we are in a real rush he MUST attempt to undress or dress himself.
I know your son is a bit older and the sanctions are limited but I feel strongly that there are certain rules he must adhere to or certain things that are non-negotiable within a parent-child relationship. Other things can slide (a bit) and you have to choose your battles wisely but your son has to know that you are in charge and not him. Otherwise, you will become a walkover and things will only get worse! I think even the fact that he recognises the sanctions are limited is very controlling. I would gradually try to incorporate 'healthy' activities into his routine that perhaps he doesn't want to do.
Lynda
Supporting Children With Autism - lecture on 16/05/13
in Resources
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Looks like it will be an interesting lecture!