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General Disccussion about your connection to autism!

Replies

  • SunshineLouSunshineLou Posts: 89Member Talkative
    My son has severe autism. He was diagnosed at 2 years old as it was very apparent even then. 
    He’s now 15 years old.
  • hartill77hartill77 Posts: 97Member Talkative
    Hi @SunshineLou ;
    My Daughter is 11 and she was diagnosed when she was 9 but took us 3 years to get her diagnosis. 
  • LilleeLillee Posts: 2Member Listener
    My 31 yr old son was diagnosed with Asperger and Anxiety age 12. I had been to CAMS when he was 8, only to be told he was an intelligent child who had temper tantrums.
    Primary, Secondary, College, University been there done that.
    Currently on an ESA mandatory reconsideration after an abysmal health check stated he was now fit for work!
  • SunshineLouSunshineLou Posts: 89Member Talkative
    @hartill77 yeah it can be a very long road for some to get a diagnosis. 
    Much harder when the person is higher functioning of course.
    @Lillee I feel for you! The entire ESA and PIP/DLA assessment processes are terrible!
    I’ve been through it myself and have only just got the actual decision I should’ve had 4 years ago!! :( 
  • vysvadervysvader Posts: 106Member Talkative
    edited July 2018
    I'm married, don't have any problem to make new friends (just later in the life, if they don't call me, I don't and we've never met), I'm very exploratory and communicative, can read faster than many people speak, and had worked as a waiter (with a big smile) and many other professions wherein none could expect any aspie... Either way, I've got traits of high functioning autism visible from the youngest age such as strong obsessivity & special interests (special for aspies), a problem to read facial expressions and meanings between lines (afterward). In fact, I spoke even sooner than other children just the voice lucks some affect, emotions, so it doesn't sound such well. I'm not without emotions but it doesn't project very well in my face gestures or voice. Also, all AQ tests pack me to HFASD.
  • psych101psych101 Posts: 6Member Listener
    I have ADHD, Asppergers Syndrome, Bi-polar disorder and emotional instability disorder, and even though i'm a qualified psychologist it is difficult at times. I graduated so that i can help others who suffer with the day to day turmoils of Autism and have worked for Autism West Midlands, i specialise in Autism and have researched it since i was diagnosed 15 years ago (aged 33). If there is Anyone who would like advice or just to talk in general about Autism i am more than happy to help. Best Wishes, Paul.
  • OuraniaOurania Posts: 14Member Whisperer
    I have a son who will be 3 next month non verbal and we have history of autism in the family. St the moment we are on crszy long waiting lists to see speech therapist etc only support we get is via a programme though the local council. Can't see light at the end here...
  • debbiedo49debbiedo49 Posts: 2,514Member Brian Blessed
    I have worked as a carer for adults on the autism spectrum, and now work with children on the spectrum. I think everyone is on the spectrum.


    I am a fibrowarrior!
  • April2018momApril2018mom Posts: 198Member Chatterbox
    I have no connection with autism. My son was diagnosed with Spina Bifida prenatally. Not to say that he does not have autism. My mom’s best friend has it. He was diagnosed with autism about ten years ago. 
  • feirfeir Posts: 354Member Chatterbox
    My son has this (along with mild learning difficulties and mental health issues), my best friends husband and most of her kids have it (she is an amazing source of knowledge and help in ASD matters). My sons best friend does as well, probably a few of them do but i don't know many of them that well.
  • fishingmumfishingmum Posts: 562Member Chatterbox
    2 sons with autism, one high functioning and one severely autistic who will never manage on his own.
    life is too short to let others make you miserable.
  • Jennypops82Jennypops82 Posts: 0Member Listener
    My son is 4 and was dignosed with autism this year. Currently waiting for him to be seen by an educational psychologist before we register him for primary school. It took us 1 & half years to get through whole diagnostic process.
  • Chloe_ScopeChloe_Scope Posts: 1,368Member Chatterbox
    My brother has aspergers and is 18 years old. I am incredible proud of what he has achieved. He has just finished his A-Levels (after really struggling with them) and is trying to find an apprenticeships in accountancy :)   
  • hartill77hartill77 Posts: 97Member Talkative
    My brother has aspergers and is 18 years old. I am incredible proud of what he has achieved. He has just finished his A-Levels (after really struggling with them) and is trying to find an apprenticeships in accountancy :)   
    Thats Amazing! 
  • hartill77hartill77 Posts: 97Member Talkative
    My son is 4 and was dignosed with autism this year. Currently waiting for him to be seen by an educational psychologist before we register him for primary school. It took us 1 & half years to get through whole diagnostic process.
    Thats good to get him seen before he starts school. Will be a great help for when he starts primary and getting the support he needs.
  • hartill77hartill77 Posts: 97Member Talkative
    I have worked as a carer for adults on the autism spectrum, and now work with children on the spectrum. I think everyone is on the spectrum.

    The way it was explained to me when I said that everyone is on the spectrum was that 3 people could be sick but for different reasons
    1. Morning sickness
    2. A bug
    3. A hangover
    so although they experience similar symptoms and can compare its not always because of the same reason. 
    I think we all traits that can put us on the spectrum but they are also part of peoples personality.  
  • hartill77hartill77 Posts: 97Member Talkative
    Ourania said:
    I have a son who will be 3 next month non verbal and we have history of autism in the family. St the moment we are on crszy long waiting lists to see speech therapist etc only support we get is via a programme though the local council. Can't see light at the end here...
    I think because of budget cuts and other reasons there is a massive back log of appointments.  I felt like that when my daughter was 3 and only seemed to be  me that noticed she was not neuro-typical. She was 9 when she got diagnosed. It is long but you will get there and you have afamily history so you have some understanding about autism which is an advantage. 
  • vysvadervysvader Posts: 106Member Talkative
    edited October 2018
    hartill77 said:
    I felt like that when my daughter was 3 and only seemed to be  me that noticed she was not neuro-typical. She was 9 when she got diagnosed. It is long but you will get there and you have afamily history so you have some understanding about autism which is an advantage. 
    That's normal, because within hfASD till 8-9, it's not a rule, but the interest in a social interaction is in many cases the same as for neuro-typical. The more prominent symptoms are recognizable later, around 8.

    I'm not sure that it's always an advantage. In the vast majority of the world with just a few exceptions like the UK, Asperger's syndrome isn't recognized as any condition causing a disability, just a matter of the diversity caused by evolution (also some people are taller/smaller, blonde/red/black haired, etc... there are many diversities and also in cognitive matters like for example, in the average, males socialize, speak, empathize, and cope with the environment less than women but none calls it a disability, it's seen merely as a genetic variant and none minds). There's no support for them, however, if the kids are not labeled as disabled, they're growing more confident, easier socialize, aren't bullied, and later in their lives are simply employable (employers don't discriminate them for their health conditions if don't know about it) comparably to neuro-normal.

    I'm not sure that the blue label is also an advantage for the kids.
  • hartill77hartill77 Posts: 97Member Talkative
    I agree I thought that once my daughter got her diagnosis she would get Sen support in school.  Even with the report from the OT they didn't follow it unless there was a problem and I was called in. 
    You are right about the lack of support I find autism westmidlands groups a big help to me. 

  • Firefly123Firefly123 Posts: 272Member Chatterbox
    My 16 year old daughter 20 year old son and I'm more than certain my 23 year old son has also but his diagnosis is all separate server social phobia server anxiety OCD agoraphobia him and his brother have all the same problems only difference is that at school he was well above while his brother was well below and the time it takes to get a diagnosis is not good at all my daughters process started in her first year of secondary school just got her diagnosed at the beginning of the year so didn't get the proper help she needed and is now in her last year as has no chance of getting the results in her exams to be able to stay on 
    Everything is endless battles to try to get the help they need 
  • hartill77hartill77 Posts: 97Member Talkative
    I agree @Firefly123 children are getting less and less support to help.
    If they know a child is under assessment they should try to help them. I know a parent who home schooled her second child because of her first child's experience at school. Its a shame. 
  • Firefly123Firefly123 Posts: 272Member Chatterbox
    Yes it is I'm trying to get them to apply for a statement or I will myself she's missed more than half her lessons the past few years even though she's always at school so they can't say she is managing as there is more than enough evidence to prove she is clearly not and would help her at least get the right support at college or that will never work for her. 
    They are failing so many kids 
  • hartill77hartill77 Posts: 97Member Talkative
    Is there another school that she could go to? where they could support her? My daughter lacked support all through primary and we moved areas.  She goes to a better school now where they picked up on her classroom anxiety in the first week of her been there. 
  • Firefly123Firefly123 Posts: 272Member Chatterbox
    I wish there was I had a meeting there on Friday and it went from bad to worse she got excluded for 5 days as she punched a wall and they are saying they can't handle her I'm like should you not be asking why she's punching walls as it never happens at home ever. They are talking about kicking her out all together or making her do night classes that I know she definitely will not do as you don't go to school at night. So I have to wait for a letter to see what they have decided. I'm so angry as I've been asking them for years to get help but they didn't even apply for a statement of special needs and now they are saying this it's beyond belief 
  • hartill77hartill77 Posts: 97Member Talkative
    Do you have someone to help and support you? Have you contacted autism westmidlands. I've had great help from them. The problem with schools is that it's their policy but law trumps policy every time. You are right night school won't help as that's disrupting normal routine. I hope she gets a good college and a statement after all this. 
  • Firefly123Firefly123 Posts: 272Member Chatterbox
    Yes we had a woman from out reach also at the meeting she was not happy at the way they did it either and said so them just trying to get to may to get rid of her is not how it should go but yes of course they said they didn't mean it like that the meeting was meant to be 30 mins took 2 hours and tbh I didn't take half of it as was very exhusting and one sided as was 5 teachers I did hear self harm by punching the wall I guess so until I get the letter might get a better idea of what's going to happen 
  • hartill77hartill77 Posts: 97Member Talkative
    Has your daughter ever been viewed? assessed by the cat worker at school. I requested this after her diagnosis don't know if that would help. Let me know how you get on and if there's anything I think of to help you I will let you know.
    My Daughter saw an occupational therapist that was a big help for her an explained why she use to hit out.  I dont know if thats something that would help or if you have seen one.  The waiting list for them is long though. 
  • Firefly123Firefly123 Posts: 272Member Chatterbox
    I'm. Not sure I know she saw an educational psychologist as she kept getting into trouble as won't take of her hoody and it's against school policy. So she heard about a typical day of them trying to get her to remove it 50 detentions later and they are not getting anywhere she asked what happens if you ignore the hoody and they said then yes she did actually get her work done so she said they have an obligation unter the disability act to make reasonable adjustments to their policy and she should be allowed to wear it but still at the meeting on Friday they were moaning about it again. I feel they were looking for an excuse to exclude her as she's never been before for punching the wall.
    Thank you i
    t's just a never ending battle 
  • hartill77hartill77 Posts: 97Member Talkative
    I know what you mean it's a constant battle. Stay strong you can do this!! 
  • TLC11TLC11 Posts: 13Member Listener
    psych101 said:
    I have ADHD, Asppergers Syndrome, Bi-polar disorder and emotional instability disorder, and even though i'm a qualified psychologist it is difficult at times. I graduated so that i can help others who suffer with the day to day turmoils of Autism and have worked for Autism West Midlands, i specialise in Autism and have researched it since i was diagnosed 15 years ago (aged 33). If there is Anyone who would like advice or just to talk in general about Autism i am more than happy to help. Best Wishes, Paul.
    Paul this as amazed me well done for being a fighter, i have just posted about. my son i would be so grateful for some advice if and when your are free if you would be able to  contact me no rush would mean alot.
    Many thanks tanya 
  • hartill77hartill77 Posts: 97Member Talkative
    Hi Tanya
    Feel free to post and ask advice in here too! 
    :smile:
  • TLC11TLC11 Posts: 13Member Listener
    Thank you its a rather long rant but any advice would really help as everything just seems to over welming at the moment i will see if i can copy and paste x 
  • TLC11TLC11 Posts: 13Member Listener
    First of all thank you for  letting me post here not sure my son has autism but i just have a feeling its possible i am sure your be able to advice as would know better .

    Hi everyone 
    I dont even know where to start right now this maybe a long post sorry ... 
    First of all you all seem so lovely and supportive keep it up its so rare to find someone who understands. 

    My son is 8 will be 9 December 1st not very long at all. 
    There has always been something with him that has not overly been right as a baby the midwide questioned autsim, he would not pick anything up and just put it in his month would sit and look at it (food test) had to have set cup and plate if anyone ate from it he would throw the plate and was the same if anyone drunk from his cup. My daughter was going though being diagnosis for narcolepsy so it wasn't something at the time i took into account, i feel so bad now seeing how he struggles. Maybe i should of pushed things sooner.
    When he started nursery his speech was questioned he was very quite didn't really  talk alot and was always told "he has 2 older sisters who talk for him, not to worry just keep reminding them he needs to talk for hiself" we could always understand him but school or anyone else struggled.
    Nursery then refered him to speech and language therapy, it come back the school had not filled there bit in right to take it back to school re do their part and send it back his now in year 4 that to this day has never been done and with every letter that come though for him states his had or been referred to therapy. 
    In year R teacher never had any issues same as year 1 although they would say he wants to be a baby he don't want to do the work he daydreams alot they had no real worries about him, so i left it i didn't really take much into account what i see thinking maybe he just likes screens. (Cat in the hat he wouldnt sleep with out watching it) would be like i have taken away a lifeline. His always had a thing for teddy bears thats stayed even now. He never use to really play and it was only watching him today that i look back and think his always just lined things out had tv on unless it was wheels related he loves anything that runs on batteries and is the first thing he asks now does it have batteries.
    Year 2 i was told the same thing the only difference was this teacher had a teacher my daughter had and i found i could ask her the words "i think his autism" left my mouth before i could think. Her son is autistic so i don't know if that made me open up for the first time.
    Year 3 was just as hard he would take himself out of class, lash out over things like a rubber being taken his teacher wanted to take his number square away. She even said how he can't keep up if a acreen is on or classroom is to loud, busy or colourful. That was when his year 2 teacher become senco and his ehpc went though so fast.
    Here we are year 4 

    I finally get a appointment to see a behaviour doctor who i thought maybe of help as i had seen him for my daughter not understanding narcolepsy he never done much for her but had a interest in sleep. Here we was in field so to speak.
    He took one look at the ehcp got my son to draw a picture asked him questions but still reading so how much he took in who really knows. Looked at me and said he has audio processing delay... having hearing trouble myself i understood what he was saying. Yet when i said to him but this dont explain as to why his anxious in busy places unless its a sensory over load he walks around hood up and hands on ears sometimes depends on level of loud.
    He will not try anything new if he does we need to show him ie rides it dont leave the ground, has no upside down bits and it don't go fast. 
    Even taking him to just ride (bike riding) was a list of questions. It took alot of reassurance in the end he come along he sat on the bus looking very white and sheepish huged into me (he loves bikes) was the unknown of the track. Once we got outside and he could see it was ok until we got up to the bikes then he was overwhelmed because the bikes was not his own bike. Even with staff and us getting on bikes he wouldn't. 
    Other things like when i ask him to get dressed unless i put the clothes in his hand he will carry on what his doing, when its bathtime he will not go and run a bath we have to do it for him if he wants a bath he will ask us to run it if we try and exchange him to run it himself well sure from reading this you get the idea. Is this a process disorder. Well i  was i spoken down to its not a disorder its a delay your putting a label on him... he was not interested in my worries i had not got to food he was like so M why don't you get dressed when mum asks "because i don't want to" why don't you run yourself a bath "because i don't understand the taps" i was told to just keep showing him. 

    A few days after clinic in school he went over on his ankle on the Thursday no one told me he come out of after school club with a limp and some bruising didn't really think anything bad had happened or school would have told me surely. Took him in the next day he come out sweating looking white and withdrawn his teacher said it was because i said about him hurting his ankle and that she had told him not to run. When he got home it was clear it was not just a case of a small bump it was sollowen up a visit to a&e had confirmed he tore his ligament in his ankle. The sweats was clearly pain sweats he never told anyone he was hurt or in pain so for over 24 hours he braved it. 

    I then called the drs pa to ask for advice on the fact he can hurt himself and yet still not communicate it. If i can have a appointment and was put on for the next one that is cancelled.
    Low and behold i get off the phone to find a letter from the doctor goes on how he supported my daughter... why that was needed is beyond me. He has learning  difficulties and his age is that of his difficulties his made no appointments (yet we have another one for a years time) his going to contact the school and see if they have any other worries... 
    Most unhelpful letter as yes i am aware of him having leaning difficulties we can see that with his reading writing fact he dont do homework because its above his level we end up showing him doing it for him, his teacher is against giving him work he will be able to do himself because he needs to catch up as year 6 exams are coming up. He never sat his year 2 ones because he was not allowed to have someone read and write for him. I expect he has issues there its the other things that worry more about. 

    I honestly don't know where to turn at the moment i am 1/2 way though a letter where i am adding photos of things to see if his doctor cant see us, maybe he will refere us on to some one who will listen. Or am i just taken up a space for a child who does need it. 
    Sorry this has has been long advice much needed feel like i am going mad at moment.
  • hartill77hartill77 Posts: 97Member Talkative
    Hi Tanya

    First all remember you are your sons expert. You know him better than anyone else! 
    Go with your gut feeling. 

    My daughter didn't get a diagnosis until she was 9 and I had problems at school from year 2. 

    Have you tried contacting autism westmidlands there really good. 

    I keep a folder now of evidence from school and doctors letters.  If you speak to a teacher at school, I send an email after just so its logged and can be used again because teachers and senco often say things and don't stick to them. This also gives you a paper trail of dates makes it easier to chase things up. 

    Keep a daily diary so when you do have an appointment you are prepared and can show. 

    Ask Senco at school if you have the CAT worker to come out to view him at school. 

    I don't want to overload you with too much. So if there's anything you need ask! 

    There's a delay in appointments because of lack funding and budget cuts so you have to keep on at them. 
    Your not alone and there's lots of people on here in similar situations too. 

    Hope this helps x
  • TLC11TLC11 Posts: 13Member Listener
    Thank you so much, its really helpful  i have started making notes filming what i can etc. 
    I have not called anyone on autism  as i am in limbo on if this  is what he has or is it to do with learning. I feel  completely overwelmed by it all. 
    Please may i ask what a cat worker is.

    Thank for taking the time to read. I will go look at autism midlands now  .

    X
  • hartill77hartill77 Posts: 97Member Talkative
    CAT is communication austim team. All schools can request they come out. 
    My daughters primary school refused so the doctor contacted them directly. Which is how my daughter got her diagnosis. 
    You don't need to have a diagnosis but if you contact them they can give their opinion on if they think he is and point you in the right direction. 

    There are also groups depending on where you live that you can attend. 

  • TLC11TLC11 Posts: 13Member Listener
    Thank you  that is so helpful cant believe your daughters school  refused. How is she doing now hope things are alittle. easier for you x 
  • hartill77hartill77 Posts: 97Member Talkative
    I was lucky because of her sensory processing difficulties it got us an appointment with the occupational therapist. 
    Once we had that appointment she got her diagnosis. But I've asked since for an appointment and was told there's a 12 month waiting list :(
    Were fine at home its mostly social problems at school that's the issue and she's now at a better school too! 
    I've done some courses too which helped me. 
  • TLC11TLC11 Posts: 13Member Listener
    I feel the same at home his as good as gold bit hard for him not to be, he likes his own space headphones in and away he goes. Its school and when we are out. I looked on the site thank you going to give them a call tomorrow. Advice is much needed as its often so stressful when his out and about. 
    Pleased your  daughter is at a better school its so important for them to be comfortable and understood, i bet the courses really helped you also. 
    My daughter had a o t you can't  fault them some have so much knowledge. I cant help but think the funding cut as a massive  park even our physiotherapy lady today understood and got M out a feelings  board.
    As for the 12 month wait  gosh tell me about it our last appointment he said 12 months until next one unless the school have worries.
    Time will tell i was at the clinic today so handed in some photos and a 5page report so lets see where this gets him. I hate seeing him so distressed more then anything we are out he would more then happy to hide x
  • hartill77hartill77 Posts: 97Member Talkative
    It doesn't get easier but having access to resources is a massive help to us. 
    Theme parks was a problem for us but we now get a ride access pass and staff are always really nice. We've had some really good days out in places for autism events as well. Autism westmidlands do kids clubs. 

    What area do you live?
  • TLC11TLC11 Posts: 13Member Listener
    I live in essex omg theme parks yes they are horrible, he cant wait in lines his ok for about a few minutes you then get how long now, as time goes on he becomes more and more stressed lashes out runs off  hides, even when we went to madam tussards they do a wax mould of your hand his sisters wanted to do it he freaked right out and stood biting himself its sometimes heartbreaking because i don't know how to help him. When we took him to legoland they do a quite time in the starwars bit and he done so well in there and also in chessington when it was just him and me his hoode was down and so relaxed normally he hides into me. I know legoland offer a sensory area, not that we have used it. Resources are so needed and is all the information thank you for taking the time to talk with me. Massive help x 
  • hartill77hartill77 Posts: 97Member Talkative
    Its good to have people to talk to and swap stories. 
    If you claim DLA which you entitled too you can use that to get ride access pass. 
    I sometimes will take a surprise out with me an example - I took a bag of sensory toys for at the airport so when it got to much I let her sit on the floor whilst queuing to play with them. She's 12 this new years eve so I sometimes get dirty looks off people but I just ignore them. 
    Having a distraction sometimes helps. Once you know what makes them tick or triggers its easier to help them I have found.
    And I'm always here to talk if you need anything 😊
  • vysvadervysvader Posts: 106Member Talkative
    edited December 2018
    hartill77 said:
    My daughters primary school refused

    While 1-2% of the population has got Asperger's Syndrome (and other HFASD) what projects around 1 million people in the UK, the vast majority of them don't have any learning difficulties thus it's very reasonable that they use to refuse. Asperger's Syndrome doesn't cause any learning difficulties (except non-verbal communication and idioms), just can make it worse if there are any additional conditions.

    These forums and GPs are visited by parents whose kids have got a severe autism (IQ < 70, meantime, your daughter has got a normal IQ as well as rather of Microsoft CEOs have got the same and zero problems caused by ASD) or/and some secondary condition such as dyslexia (which isn't associated with HFASD, or Asperger's of your daughter). 15-20% of the population is dyslectic and on these forums, you meet only the parents of dyslectic kids. If someone has ASD with dyslexia, then it's worse than dyslexia alone, however, if your kid has got just that ASD and many of her classmates are furthermore troubling (from 1 out of 5 to 1 out of 7 of her classmates are dyslectic) then I missed the point.

    Best regards
  • sunnyag16sunnyag16 Posts: 4Member Listener
    I tried Pierre Fontaine's online homeopathic consultation for my two-year child and now he is better than he was before I consulted with him.

    https://homeopathicservices.com/autism-treatment-checklist/
  • vysvadervysvader Posts: 106Member Talkative
    edited December 2018
    Thanks, that looks very promisable. According to tests, I'm somewhere between Asperger's Syndrome and NT. Once, I'd got official complaints from one of my bosses that I'm very overfocused on my job, work well but either way, that it'st in a too excentric level and I miss all the chatting (socializing, reportedly, I missed too much), what's not true all the time (sometimes I just can't shut up, stop speaking). I'm not kidding, this isn't any joke, it really happened, I got a complaint that I overfocus : ) I underwent DNA testing. When I see my DNA medical results I think your pills could help me to be "normal", get rid of all the high levels of choline and dopamine (to be similar to other people, in-centric and thereafter more socially acceptable) despite the fact that there are many people who are willing to spend money on neuro-tropics and have to undergo very uncomfortable side-effects just for something that we're able to reach naturally, the focus when you can reframe all your attention from the environment, the "eccentrism". Either way, I will take it seriously, however, I don't know why I or someone else with ASD traits should do it. Just to be exactly the same as others, to pass into a crowd? Perhaps, it solves the social matters, but there's also something to lose.

    It's rather about a combination of multiple factors (usually, the factors are not such rare, but there's more of them), not a single causality. NHS would say about the male brain proposition and overgrowth in the time of pregnancy is the most dominant factor. You can check what's the genetics of people with a weak ASD (in the attachments), on the right side is the percentage of population having the same (8/10 of people have the same genome for Asperger's Syndrome). One other gene, the ability to read expressions and mind of others is decreasing under a stress, with a decrease of oxytocin (that's the main factor in my case, lowered oxytocin) and phosphatidylcholines are cholines (from lecithin, the brain food). It's a combination of factors, but they're not such bad. The rare (Finnish/Russian) blood gene (50%+ more oxygen preventing brain damages) is just for an addition : ))))

    Best regards,
    J. Vysvader

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