Know Your Options: AUTISM, The Misdiagnosis Of Our Future

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May 27, 2016

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  1. 13-04-11, 10:44 #1

    3 year old son may have autism

    Hi
    We have been told that our 3.5 year old son may have autism. His pre-school did not and still don't really think so but he has seen a speech therapist both privately and on the NHS and they both think that he shows some signs of autism, eg, doesn't hold eye contact for long, is difficult to engage when he's focused on something and is super advanced in terms of counting and knowing the alphabet and what sounds words start with but is delayed in his speech and proving difficult to potty train.
    We have packed in the private speech therapy sessions because we really couldn't afford £65 a week but I'm a bit dismayed to find out that having had one NHS session nothing else is going to happen apart from a workshop that we need to attend in May and also the speech therapist is going to go into his pre school where he does 2 mornings and 1 full day and see how he interacts with other children and also give the pre school pointers as to how to bring his speech along.
    I thought he would have speech therapy on the NHS but she said there isn't any need as he doesn't start school until next September and when she listened to him when he was playing by himself he was chatting away in proper sentences but was only answering her in one to three word sentences which leads her to think one to one speech therapy isn't going to be of much use to him anyway.
    She is also going to refer him to a pediatrician.
    Does anyone on here know how long the assessment procedure takes, what we can expect in terms of support etc? I've been reading books on autism and some things do stand out but others don't such as he is very affectionate and bestows cuddles and kisses on all his pre school teachers etc and also shows empathy by crying when his big sister hurts herself or running over to her and saying "a kiss" when she is crying and puts his arms round her.
    I feel scared. I don't know what to expect over the next year never mind the rest of his life.
    At the weekend in the park a little boy came over to him and asked him how old he was. My son stood there and couldn't hold the eye contact and looked at his shoes. The other little boy walked off. My son then turned round, looked at his retreating back and said "thwee". But it was too late, he'd gone off to play with someone else. I'm just so scared he won't be able to make friends, will be bullied etc.

  2. 13-04-11, 12:05 #2

    Hi Justine, my son was just over 2 when we were told that there was something wrong and we were told he had aspergers last April when he was 6, I think it depends on where you live. If you need any information the National Autism society is very good, we have phoned them on a number of occasions and they have e-mailed information etc.
    Try not to be scared I know its hard. Some autistic children do take a little longer to process what is saying to them, so thats why it may have took your son a few moments to answer the question to how old his was. Sorry I cannot be of much help.

  3. 13-04-11, 12:21 #3

    Thanks Lisa. Did you get any help for your son before he was officially diagnosed? How is he now? Sorry for all the questions, I just want to be doing as much as I can to help him while he's still young and not yet at school.

  4. 13-04-11, 16:15 #4

    When he was at pre-school we didnt really get any help, a lady from the Specialist Teaching Service early years Sen inclusion team (a mouthful!) would come every now and again and observe him, and she was always on the end of the phone. Now he is at school we have a lady from Autism outreach that we can contact, really we have a good support network where we live. When he started school, there was an autistic person in his class with a special needs teacher, so what they were doing was using stratagies on my son which helped him, we are in the middle of getting him a statement, so hopefully he will get some one to one teaching when he moves into year 3 in September.

  5. 13-04-11, 18:53 #5

    Presumably he settled into school okay then despite not having any help beforehand. I'm just concerned about how my son will make friends if he still isn't able to hold conversations when he starts. Maybe we will have to think again about private speech therapy in that case.

  6. 13-04-11, 19:51 #6

    Hi there,
    My son was diagnosed with global developmental delay at first and then asd when he was 5 (last easter infact).
    He was seen by a specialist peadiatrician, these are the people that diagnose, he had portage before he started nursery, then he had support at nursery (inclusion service, salt and ed psychologist where all involved at this stage) and had an IEP in place.
    His friend at nursery also had asd, he seems to be drawn towards other children with special needs, so they were very good friends but they didn't talk to each other lol!
    He started school without that much support, but the most difficult part for the teachers was his speech, nursery could understand him and so could we as we were used to him, eventually his speech improved and all was fine!
    Friend wise, he doesn't really have any good friends at school, he doesn't really talk about anyone at school rarely gets invited to parties, but his teacher says he is happy in school and the children all get on, and that some of the girls mother him (my friends neice being one of them), and one girl has been making him cards with hearts on which is sooooo lovely!
    He has a statement now and is doing much better since he moved into yr1, and he seems to try and play with the other children a bit more.
    Sarah x

  7. 14-04-11, 08:55 #7

    Thanks for the reply x

  8. 15-04-11, 22:22 #8

    Hi Justine
    My little boy is 4 next month, we are on the waiting list too, to see if my little boy has autism, I wasnt aware of any particular problems until he started school (half days) back in september,his problems as the same he finds it difficult to hold eye contact, doesnt aways reply when you are talking to him and finds playing with other childrens difficult.
    But he is the most loving little boy you could ask for, he ticks some boxes but definately not all. In February we were approached by the lea (local education authority), who wanted to move him to an assesment centre 18 miles away (within another mainstream school), to assess his needs, the bottom dropped put of my world if Im honest, I wanted him to stay in main stream (he may go back to mainstream eventually) they deal with mostly children with social and communication problems, he is very bright, like your little boy he is fantastic with numbers, alphabet, computers, his vocab is huge, but struggles to communicate, but on the whole is a very good little boy.
    Two months down the line and the changes are huge, he goes to bed by himself (never did this before we had to sit with him until he fell alseep, great in the shower (he hated these before) his talking is coming on really well and so is the eye contact. Im hoping the next thing will be potty training as this is another thing we have struggled with.
    So I think picking it up early is the best thing (I resented the school at first for saying my son was different) , I have a friend who is only unravelling all her sons communication problems (possible aspergers) at 14 and she is having a terrible time.
    So things do get better with help, I hope you find it.
    If you need any info from me, please feel free to get in touch
    clare

  9. 16-04-11, 12:39 #9

    Thanks, sounds like our boys are quite similar. 18 miles away! I can't drive so that would be a nightmare if that happened to us.
    Can totally relate to that bottom falling out of your world feeling. It's come as such a shock - when your children are born and all seems fine you tend to think that's it don't you. I just wasn't prepared for this at all. My husband is dealing with it all a lot better than I am.

  10. 17-04-11, 19:44 #10

    Hi Justine
    Please don't feel that you have to get your head around this all in one go. Give yourself time and don't be afraid to ask lots of questions
    I am wondering it might be helpful for you to ask the SALT to meet with you and the Pre-school at the same time so that you all have the chance to hear what the SALT is suggesting and can put together a support plan?
    Emma

  11. 18-04-11, 10:42 #11

    Thanks, yes that would be a good idea. I work part time and my son goes to pre school on days that I work but I could juggle my days around to fit in with that if necessary. I don't think an appointment has been made yet though as the SALT had not yet phoned my son's pre school when I phoned her to check on progress last week.
    I guess I just have to go with the flow at this stage. Thanks for the support.

  12. 18-04-11, 11:29 #12

    LABELS

    We all have a different way of communicating and your child will be no different. The issue is WE have to understand the world as they see it. Your Child is UNIQUE and so is the way you communicate. Don't go looking for answers go looking for understanding, with that you will avoid conflict.
    Will

    Last edited by Chelle; 18-04-11 at 11:49.

  13. 18-04-11, 11:44 #13

    Hi Will i know what your saying but if labels get me the help and support i need for my children and gives them a better way of living sorry but il go with a label.
    I know my son has problems like a lot of parents here im not getting into a debate about labels and no labels but its whatever helps my children in the long run, helps them to be understood, most people now take the child for who they are anyway these days.
    its not about labelling a child its about getting them the help and support they need and them growing up happy and content.
    ps to the OP sorry for hi jacking your thread

  14. 25-01-15, 16:45 #14

    Hi Justine,
    I have just come across your post, and I know it was a few years ago now, but I wondered how your son was getting on now? I am right now, in exactly the same position as you; my son is coming up to 3.5 years old, and it looks highly likely that he is autistic. We find out for definite next month. We were initially told he was echolalic, and breathed a sigh of relief. But our hearts jumped up to our throats, when the paediatrician then said we were going to have to start thinking down the lines of autism, due to observations made at the nursery, the lack of eye contact and his interest in numbers.
    He too doesn't maintain eye contact, and is difficult to engage when he's engrossed in something. He currently goes to a specialist nursery as well as mainstream. they use visuals which stops the echolalia. I am really concerned because my son is August born, so will be one of the youngest in the year (being this year :/ and I too am worried about him being bullied and a lack of friends made).
    I know the wait used to be 6 weeks for a statement, but now its an educational healthcare plan, and the wait is now 20 weeks.
    I too, am petrified of what the future holds, and wondered if it was possible your son may have been given a misdiagnosis, because I wonder if the NHS is under such pressure to see to people now, waiting times etc, that they would rather risk misdiagnosing, rather than neglecting a case, if that makes sense? Just that children under the age of 5 in particular develop at different rates and they usually have little quirks that are related to autism.
    On the NHS, we were allocated speech therapy sing and sign classes, which were a complete waste of time! Was there any chance your son was given a misdiagnosis, and how is he getting on at school now?

  15. 26-01-15, 20:58 #15

    Hi
    Wow, yes it's a very long time since I posted this thread.
    He was diagnosed with autism in 2012. There were a number of components to that diagnosis - I got reports from an occupational therapist, speech therapist and neurological pediatrician - all privately because I was just getting nowhere on the NHS. Then I applied for a statement, he had a year of NHS/local authority assessments and he was awarded a statement which started halfway through his reception year. He gets a 1-1 25 hours a week.
    He doesn't get OT or Speech therapy though so I'm trying to get that for him, particularly as he has just been diagnosed with hypermobility and auditory processing disorder (often part of the jigsaw that makes up the spectrum) and I want to make sure that he's getting all the help that he needs, not just help with social stuff.
    He is doing well in mainstream school, his reading age is way above average. His maths is way above average and he gets invited to parties. Some kids tease him a bit and he is aware of it but so are the school and its stamped out pretty quickly.
    I still feel sad when I see a report that reminds me of all the difficulties he has but my focus is to get him all the help he needs to be the best he can be. When I think of that little boy of 3 who was barely able to communicate I can hardly believe its the same person as the chatty 7 year old that I have now. Who knows what he might achieve by the time he's an adult.
    Stay positive and focus on getting your boy all the help you can. Remember too that professionals who focus only on the positive aspects of your child's development will not help him get a statement. It's hard to read or hear the bad stuff but it's a pain that I had to go through to get him what he needed. And it still goes on and will for as long as I have any say in things.
    Good luck, I know how hard it is when there are so many unknowns. Whatever happens, its always better once you know what you're dealing with because then you know what you are dealing with and can focus all your energy in the right direction.
    Take care x

  16. 31-01-15, 19:02 #16

    Hi Justine,
    Thank you so much for replying, and yes it was a while ago now so it certainly must have been a surprise receiving my response to your thread!!
    I too am getting nowhere with speech therapy on the NHS. We are looking at going private too, but its hard cos everyone is so booked up! It sounds like your son is getting plenty of 1:1 at school, that's brilliant. Do you mind me asking what sort of additional help your son gets at school, is it with visuals? Will he always need that amount of extra help throughout the rest of his school life? I know each child is different, but at this stage we've got idea what the future holds.
    I really hope my son will be as chatty as your too one day. They think he has passive autism. It seems really hard to imagine at the moment though that one day he will be chatty, as he's not bothered at all about interacting. I too have also heard its hard to get a statement, we will do all we can to get him the help he needs. Does your son make eye contact now and answer to his name and have his own set of friends? Sorry about the questions, my stomach is in knots!!!
    Did you join any support groups? You sound like such a great mum, doing such a terrific job pulling the stops out to get your son what he needs. I feel exactly the same, the determination is right behind us both. Thanks again for responding, it's reassuring to read your message and certainly gives me peace of mind!!
    x

  17. 01-02-15, 11:54 #17

    My experience of NHS speech therapy has been woeful. I remember me and my husband got sent on a "time to talk" course with other parents whose children had speech delay. It was centred around telling parents to play with their children and not sit them in front of the TV all day. All the parents that were there were educated, caring parents who were already doing all the right things but who clearly had children who needed help. After the video (which the 22 year old speech therapist couldn't even set up without my husband's help) she invited questions but couldn't answer any of them - all she'd been told to say was "enourage eye contact, make time to play and limit tv to 2 hours a day".
    He now gets no speech therapy at all on the NHS. The SENCO at his school says that when children have autism they take the view that as it's an autism related speech disorder there's no point in giving them speech therapy. Whether that's a write them off attitude or because they don't have speech therapists trained to help children with ASD related speech disorders I don't know - either way it's disgusting. He's been having private speech therapy for years now - I'm very lucky, the lady he sees is brilliant. She lives a long way away so I have to pay her travel expenses but it's worth it.
    In terms of how long he will need his statement - I dont know. He improves all the time but of course he is getting older so will probably always play catch up socially/communication-wise. When he was 3/4 I was worred about getting him to talk in proper sentences and being fully toilet trained. Now there are other things that need to be worked on to do with sensory issues and so on. His statement gets reviewed annually. There is a meeting where myself and all the professionals involved with him discuss his needs and we always agree that his statement should continue.
    I take things a year at a time and am not thinking about secondary school yet - although I hope he will go to a grammar school as he is certainly bright enough. I can't imagine him at 11 any more than I could imagine him at 7 when he was 3/4.
    Thank you for the lovely things you said - I don't think I'm all that great really. My big regret is not spotting the signs earlier. He used to tense when he was excited from about a year old - we used to think it was an endearing little quirk - now I know it's one of the first signs of autism.

  18. 06-02-15, 22:48 #18

    Hi Justine, that is so interesting what you said about the speech therapy!! I do think also they try and brush people off too. It is disgusting. We are seeing the paediatrician in 2 weeks time now, who last time said by this time she should b able to definitely have a diagnosis. Obviously we r quite worried, esp as before we thought our son had made so much progress, but we will just have to go with it. I do think she may have more of an idea when he's 4 yrs old instead, as he's come a long way in a short space of time with his speech. The reports have all so far been a bit contradicting, but as long as he gets the help he needs, that's the most important thing. Once we ve seen the paediatrician, we'll definitely go private for speech therapy too. At least then we'll have more info for the therapist to work on. I'm finding it a shock to deal with, cos if he is autistic, we've not had this in the family (as far as we r aware of, anyway!!!) I wish you the very best of luck with things in future, and thank you for your reassuring messages. Its been extremely helpful indeed xx

  19. 06-02-15, 22:55 #19

    PS in terms of nhs speech therapy, we did sing and sign initially. What a waste of time that was. The private therapist said she does a lot of therapy thru play. Sounds better. But I can imagine each age is a worry, with a different lot of things to worry about. I feel its put years on me already!!! It sounds like your son is doing really well tho. Take care x

  20. 07-02-15, 10:15 #20

    Thank you and all the best to you too. Feel free to stay in touch if you ever need a chat. Hope all goes well at the appointment in a couple of weeks xxx

  21. 07-02-15, 19:59 #21

    Thank you, will do xx

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