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JeanneA

When did you realise your child was autistic?

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I have always felt that my son Glen who is now 18 didn't show any ASD signs until he became ill with a virus at the age of 3. He had to stay in hospital for a couple of days and I stayed with him. They wasn't sure what was wrong with him straight away but soon found out that in fact he had a severe throat infection. I was given anti-biotics for him to take.

 

From that moment on Glen seemed to change, he went from a happy, chatty child to a mute, and developed behavioural problems, became very clingy to me. He would have severe tantrums when I tried taking him to a play group, so I had to go elsewhere where they took kids with special needs. This was a far better group but even then Glen clearly didn't want to be there and became very aggressive. Glen just wanted to stay at home.

 

So does anyone know or has this happened with your child when they were young, did they get a virus and suddenly things changed within that child and you suspected they showed ASD signs and later clearly developed autism? Do you think it is possible if a young child becomes ill they could develope autism or are they born with it and you don't see any signs until around 3 years of age? I would love to hear from you.

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Hi Jeanne

 

My son got a severe virus at birth and then he had is first jabs and oh god i thought he's not my son what the hell. His carmness had changed into a raging bull, he was more irritable and sleep had changed. I have just posted and that may help you. Now he's 5 we has a family are so aware he is autistic without doubt the way he speaks ,behaves,social and emotional he struggles so much and it is not just him it is mummy and daddy and big sis have also changed due to him. We do accept his virus played a role in his condition weather it all to blame or not were not sure and yes i do blame the jabs it was after that he was ill and even the doctor stopped the second dose due the change in him and sickness. I as his mummy im not coping with it i cry a lot at the moment i blame myself hugely the older he's getting the worse he's getting i guess that is down to new challenges and hormones and school. I will never give him up we adore him so much when hes not in a rage hes so funny and loving which is why it is heartbreaking as people judge him by his bad side. People we speak to all say the mmr is a factor in autisim and then if a virus is caught that seems to seal it. Aaron my little is a maths genius and forget it when comes to literacy he cant put pen to paper. Hates routine or staying still, How do you manage your little one when out and about, it looked bad at weekend when he had a outburst and the only way to get away safely from the game was to hold his legs to avoid getting a kick in the face and my hubby lifted him out but still got a smack in the nose ouch, once aaron had carmed down he looked at daddy and cried and said

 

" OOO DAD WHY HAVE GOT A LUMPY NOSE DO YOU NEED A BAG OF PEAS"

 

i hope others reply to share their veiws, happy easter

 

Hazexx :ninja:

Edited by Haze

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After he started school and was not doing that to well and the professionals started talking about Autism, up untill that point it had not dawned on me (us) that his "funny" ways were anything more than taking after me. What I'm like. At that point I know absolutely nothing about Autism. From what I now know I realise that my father most probably had Autism, and me, well as I said my son was/is just like I was at that age. Only he has more sever social anxiety than I have/ remember having.

 

With hind sight we realise that his Autism affected him from the day he was born. So in answer to the OP, no, our son was born with Autism. He is now as he has always been.

Edited by chris54

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Thanks so much to Haze and Chris for your messages. I have just replied to your 'thread' Haze, hope what I said helps.

It does seem that a severe virus can possibly lead to autism and jabs also which I had suspected anyway.

 

It would be nice to get other parents comments also. Thanks again for yours much appreciated!

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well talking as a son, apparentley i was very hostile as a baby and toddler, i would pull away when my mum tried to hug me, and still do to this day. i have never hugged or kissed my mother, even when me and my girlfriend split and i was heart broken. ive never been close to immediate family. and when i was ill i wouldnt make a fuss. my mum tells me once when i had a stomach virus i just woke up, walked calmly to the toilet, did my buisness and walked quielty back to bed without a fuss, and i was 5 years old! so i was always slightly special compaired to most young children. i was quiet, hostile and indipendent. but very isolated, and from the ages of 2 to 10 very slow to devolop mentally. i diddnt say my first word until i was 3, had a dummy till 5, was a fan of thomas the tank until 11. then got to 13 and suddenly whoooooosh! fully grown man. i think main stream high school was the rocket up the ass i needed.

 

 

how did i turn that into a mini life story? ahhhhhhh! im so me, me, me these days.

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I noticed differences in my son before he had the MMR [at around age 2].

Before that he used to get extremely upset for no apparent reason. He would bang his head and vomit. The first time he did this [8 months old] we ended up staying overnight in hospital. All I had done was take a toy off him to put away and he was sitting down on the floor. He screamed and just threw himself backwards, and banged his head on the floor.

 

My neighbours were both teachers, and they told me that he was not talking enough.

 

At age 3 he suddenly started repeating reams of dialogue from TV. He had sensory issues [lots of them]. He would get upset if anyone other than me picked him up or touched him [including his dad]. At one point I became very concerned that maybe someone was hurting him because his reaction was so severe - but he never had any marks on him etc.

 

The autistic behaviour just increased from age 3 onwards. He had his first MMR jab. We did not notice any deterioration in him. But he had to be pinned down by myself and a nurse to give it to him. So they told me not to come back for the second one, which we didn't.

 

He did not any any of the language or social skills when he started school, and within 4 months of starting the SENCO had already observed him and he was on School Action.

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Hi Sally thanks very much for your reply. My son Glen like your's from age of about 3 started repeating reams of dialogue from TV. He also had sensory issues. Glen would also get upset if anyone other than me picked him up or touched him. So similarities there! When Glen started Primary School just before the age of 5 he quickly became 'mute' and wouldn't talk from there onwards at School but did still talk a little at home. Glen's behaviour deteriorated rapidly at School and they just didn't know what to do with him. Sadly Glen was there until he was nearly 7 I was fighting in the 2 years that he was there that something was wrong, that the School was not the right place for him. Thankfully they eventually listened like the other professionals and Glen was finally diagnosed with autism at 7 by a Professional Neville from Great Ormond Street Hospital and then place in a Special Needs School.

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With Sam he seemed to be very rigid with feeding times and how he would sleep(in the crook of my arm) from about 2 weeks old. He was underweight so needed to have breast and formula feeds,he liked his formula at room temp-cold, not warm,which was quite odd. Sam did get a virus when he was about 3months old and was in hospital for almost a week,however I don't believe this was the cause. He was very clingy and would scream if anyone (other than myself) would try pick him up or comfort him. I used to carry him around constantly when doing the housework or cooking and sat him in a bouncy chair when going to the loo or to bath,he just had to see or hear me all the time! It was a huge problem as I had to return to work when he was 8weeks old. I think the first time it clicked that something was not right is when my brother said something,Sam was about 2 years old. My brother noticed that whenever someone would talk to me Sam would get agitated and start interrupting or throwing tantrums,when I stopped talking he would be fine,he just wanted all focus on him. He also said how he could say many many words,some very long/complex but yet could not form a proper meaningful sentence. I never knew it was autism,suspected it may be ADHD as my brother had it. Eventually took him to the GP when things were deteriorating in school and the headteacher pushed me to get him seen. The GP said Aspergers straight away and he got his dx 4months later age 6.

 

Dan was also very clingy but with his father. He would not want me when he was ill only his dad. He also would sit on his dad's lap to eat breakfast and dinner,He would get up at 7am to eat breakfast with his dad and wait till 8-9pm for his dad to get in so he could eat dinner. In between this he ate nothing,just had drink. He was non-verbal but could communicate in his own way. He would just gaze the day away no matter how much I tried to play with him,he would respond slightly to his two brothers especially Sam,but when he "played" it was like he was in his own bubble.I left the boys' dad in 2008 and Dan was just 2years old,the problems just got worse,especially as he was close to his dad. He would scream almost 24/7 just never seemed happy. He would ask for cereal for breakfast I would give it to him then he would throw it on the floor and ask for toast,I would make toast and he would do the same again. It was a nightmare. He would hardly sleep at all which really took its toll on everyone. I first took him to a dietician when he was nearly 4 years old because he hardly ate anything,by this time Sam had a dx,the said it was behavioural and referred me to the same place that dx'd Sam. He got his dx age 4.5. With him I knew it was autism having done more research after Sam's dx and I think if not for Sam's dx I may have had a later dx for Dan. In a way Dan's behaviour was much more difficult to cope with,firstly the lack of communication and the lack of sleep made it very stressful. Both my eldest Josh and Sam really recented Dan because he got more attention,even when Elijah was born. Thankfully things are improving now.

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Hi Justine I can relate to you very much. Glen to was very clingy to me. Also like Sam, glen used to get very agitated and would throw a tantrum when I was having a conversation with another family member and when I stopped talking Glen would be fine. Glen like Sam just wanted all attention on him. At one time Glen would also be able to say many words which were very long and complexed but could not form a meaningful sentence. The next stage though Glen became 'mute' especially at School. He still very rarely talks, only when he is extremely anxious. He is more than capable of talking but choses not to. To be honest Glen is much calmer and relaxed when he is a 'mute' although it would obviously be nice to hear him speak especially when I know he can.

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Finn was fine as a baby, bit coliccy but nothing too bad. He crawled at 5 months and by 7 months he was standing and cruising the furniture. We thought he was going to be an early walker. Finn never had any problems with any of his immunisations. At 9 months old he seemed very lethergic and out of sorts in the morning but not actually ill although he was off his food, by afternoon we took him to GP who said he'd probably just had a dip in his blood sugar and to encourage him to eat. Soon after that he did take a small feed and perked up, By late afternoon he was a lot better and next day completely normal. However after this he didn't progress in any meaningful way until he finally started walking at 16 months. This however, although much slower than we had expected was within normal scope so we weren't too concerned. At 13 months he was able to use a mouse at a computer and had enough fine motor skills to navigate menu's with the mouse to get what he wanted. As a young baby even before that funny turn however he had no interest in the slightest of other children, they were nothing more than mobile furniture.

 

By about 18 months we were getting concerned about his talking however, He could say yes no mum dad and count to 14 (there were 14 steps on our staircase). Little things were starting to concern us but we kept getting told boys are slower to talk they will catch up. Some time between this 18 month point and about 2 we started having those late night conversations in the dark "I'm worried, he's going to be ok, I'm not worried, I am worried". Kept trying to tell ourselves it would sort itself out. The sleep issues had started suddenly at 17 months and the little speech he did develop became very ritualised. By 2 we were pretty sure he was autistic but didn't feel confident enough to speak those words to someone else until he was 3 and half, although we had gotten speech and language referal and his hearing checked out and nursery had asked for educational psychologist referal to be done which we had agreed to.

 

I do not subscribe to the MMR link but I know a lot do. Personally I think the scare has contributed to more illhealth and even deaths due to lack of uptake of immunisations and resultant preventable infections. I definately do not think MMR has caused it in my son's case. However I also do believe that there are multifaceted causes and MMR maybe a contributing factor in some cases. Even so I still had a few seconds apprehension as I sat waiting on my youngest getting her MMR. Fear is not a nice thing!

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Hi dektra thanks so much for your comments. What age was your son finally diagnosed as autistic and what help have you received?

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Hi Jeanne,

 

Still not actually got the dx. Have been told we should get it after the ADOS which should be next month (assuming of course the ADOS backs up everything else - if it doesn't I'm really going to be scratching my head).

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hi dektra so sorry to hear you haven't got a diagnosis as yet. How old is your son now? I do hope you get it next month as you really need a 'Statement of Special Needs' which I obtained for my son after he was diagnosed. Please keep in touch and let me know what happens. :-)

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He's 4 yrs 8 months at moment and starts school in Aug. We've been ok for help, as his nursery key worker last year was pretty good and got edu psy involved pretty quickly and although SALT were theoretically already involved by that time there were staffing issues so things slipped by the wayside there and nursery and ep got that back on track. Have had some negativity from SALT about my assertion I think it is ASD. Some people within SALT have said he is too affectionate so can't have ASD or that he wants to communiate just can't due to his lack of expressive and receptive language skills so can't have ASD. I dispute this as just because he is affectionate he is inappropriately so and communication difficulties are integral to ASD but that doesn't mean someone with an ASD doesn't want to they just can't do it correctly. On the other hand SALT have a special language unit which they got him a place at. So from October - Feb he went to that 2 afternoons a week and since March has upped that to 4 afternoons. I do see an improvement which I think is aided by their sessions. It's a specialist unit and has 6-8 kids in it at the moment depending on days as some are not the full 4 days. They have a special needs teacher and SALT in there and some days a TA too. He will continue to be bused to that 4 days even when he starts school - probably for at least a year. School are arranging extra assistance in his change over from nursery (a private one not council run one as I am a student and he has wrap around care there too) and they are including him in their special needs funding application for next year.

Have had to fight the system a little bit in getting ball rolling for assessment, that was all my doing. Nursery and first edu psy were happy enough as long as they were putting plans in place to help him they we're interested in what caused the probs or what probs he has outside of nursery. Once I raised it with the keyworker finally she was first person to agree it was a possibility and back my request for referal from Dr. When I finally decided I had had enough and was looking for referal I went to HV who referred us to a community paed (but staffing issues meant waiting time was bad) so I also went to GP who despite telling me he was "not convinced" refered him to CAMHS who refused the referal and it had to be resent to the local assessment centre for various childhood illnesses and conditions. That finally got things moving and paeds have acknowledged there are difficulties within the triad! What a vindication that was for me, even though SALT at that assessment was pretty negative (insists it's communication disorder nothing else, well she's qualified to dx the communication disorder nothing else!!). But at this review appt last month was a different SALT and she was much better. They still think there are a few inconsistancies with ASD but also said there are enough markers there that a few years ago they'd have given a dx by now. But they don't do that now until an ADOS is done too as they don't want to label a child that might just have a delay and grow out of it and who is therefore not Autistic. I can see their point but it's still frustrating. Also there is a part of me wonders what if I am wrong, what if this test show's he's not got ASD, I've been wrong and insisting on all this assessment for nothing. But whatever the dx doesn't change the needs he has so if it does turn out not to be ASD (which is doubt - I predict dx of HFA) then at least that's one thing ruled out and they can get looking into other issue. But as I have said I think it has to be ASD - although some things don't fit so many things do.

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i knew i had something wrong with me as a child when this advert made me want to punch my self in the head and go SHUT UP!!!!!!!!

that guy singing grrrrrrrrr, just gave me the urge to kill!!!

Edited by A-S warrior

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Thanks so much for your replies keep them coming :-) It is so good to hear all your stories of how your feel your kids became autistic or were indeed born with it.

 

The language unit sounds ideal for your son. My eldest son (26) went into a language unit at 5 for just over a year, it was a fantastic place I was so sad when he had to leave there. My son was diagnosed with a speech delay when he was around 2.1/2.

 

It seems so unfair that we as parents have to fight so hard to get the help our children so desperately need.

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Not liking change. Just add that my son appeared to be fighting against being born, and ended up being delivered by emergency cesarean.(He was very active before he was born so my wife will tell you) He never liked being held or cuddled, (from birth), would resist anything he didn't want with tremendous force for a new born. Still does. Would never keep the cover on him in his cot, managed to clime out of his pram when only a few weeks old. Has always sort out my company in preference to his mothers. From a few months old would get tremendously upset if left with anyone. Never sort out the company of other children. Other than speech delay developed normally, by the time he started school his speech was normal or maybe advanced. He has always been able (From school age ) to hold a conversation with adults he knows but with anyone he doesn't he just clams up and says nothing (Doctors, shopkeepers, etc).

He had problems reading to start with but when he was about 6 the school went over to teaching Phonics and from that point he just got the hang of it and is now seldom without a book in his hand. He has a poor memory for some things but often astounds us by what he does remember. His problems at school are now, apart from social anxiety and all that that brings, staying focused on what he is supposed to be doing, taking in what is going on around him (What the teacher is saying) and hand writing. (And PE, but the teacher says that he realy tries and is at times proud of his efforts). My son is now 2 weeks short of being 12.

Edited by chris54

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The other thing I noticed about my son that I thought was odd, was that I could put him down on the floor, and come back in a few minutes and he was still there!

 

My older daughter was into everything. You could not keep your eyes off her for a minute. But my son could be given something and sat on the floor and remain there. I didn't need a stair gate because he never attempted to climb the stairs [he did when older, but not at the age when they are beginning to walk]. He went from sitting, to pulling himself up and walked at 14 months.

 

But he seemd to have okay eye contact, and used to smile as a baby and toddler. Infact we used to play face pulling games.

 

Now that he is older, he seems to recognise basic facial expressions in other people. But if you ask him to smile, or show an angry face, he struggles. More often his face is blank or neutral. If he does attempt to show emotions, it is almost a copy of a cartoon character expression.

 

His speech and language was very poor. I remember I used to ask him questions like "would you like a drink" and he would just repeat it back to me. He did not get pronouns [me, I, she, he, it, them, us, his, hers, us, etc] at all and mixed them up all the time. And he definately did not get that mum could be called you, her, she, or be part of us, them etc. He used to refer to himself using his name and did not use the word 'I'.

 

I also thought he might have been a genius, because as a baby he could re-arrange the numbers 1-10 in the correct order [kind of like the child Matilda in the film]. But he was remembering and copying the pattern, because he still struggles with 1:1 correspondence and number bonds. Yet on other occasions he seems to work out mathematical calculations without being able to explain how he did it! So if he was talking about a Yugioh character being a level 12, he could calculate what combination of numbers would make 12.

 

As he has grown up, he also appears both more able than I expected in some ways, and less able in other areas.

 

We went into our Village to do some shopping the other day, and my son was talking about Yugioh again - loudly as per usual. I noticed a group of kids about his age looking and smirking. But he is totally oblivious to his surroundings or what people maybe thinking about him. I found that upsetting, because he is so vulnerable and immature for his age.

 

Looking back, I think my son should never have been placed in a mainstream primary school. But he also does not fit the criteria for the LA special primary school. I did visit it because my older sister went there. But they told me my son was too capable.

 

So we basically had to wait until he failed and became ill before we could get a suitable school.

 

His new school tell me that he does have some theory of mind [which I already knew, but it is nice to have that confirmed]. And today he has asked for a friend to come and play with him - which again is something he can request, but it does not happen very often.

 

I just think there should be more options for parents to choose from. And I think that parents should be fully informed of what is available/possible and what they can achieve for their child if they have a Statement etc. I found the whole SEN process a complete nightmare and it took me years to find out for myself, and understand what someone could have told me over a period of weeks.

 

My son's new friend at school is a boy with an ASD who is also selective mute. The fact that they are both obsessed with Yugioh has helped them both form a friendship, which is lovely to see. And the friendship benefits this other boy too, because my son keeps asking him questions about Yugioh, which he has to answer.

Edited by Sally44

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We went into our Village to do some shopping the other day, and my son was talking about Yugioh again - loudly as per usual. I noticed a group of kids about his age looking and smirking. But he is totally oblivious to his surroundings or what people maybe thinking about him. I found that upsetting, because he is so vulnerable and immature for his age.

 

Know the feeling. My son now will go quiet if there is anyone within ear shot.

If we look back at photos of my son you realise that he is never smiling. Always had a worried look on his face.

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We do have pictures of our son smiling and laughing as a baby and toddler. But as he became older, he seemed to lose that ability and is now unable to monitor his own facial expressions anymore, and if you asked him to smile for a photograph he would give a very unnatural grimmace - like he had forgotten how to smile.

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Hi Sally and Chris thanks for your comments. Glen to is a selective mute. He does smile when asked to which is nice to see and he also smiles at other times and giggles recently which is also lovely. Glen also referred to himself by using 'his name' like your son did Sally. Glen also did not get pronouns and he would also repeat things back to me if asked if he wanted a drink or if he wanted a biscuit. However now he rarely talks at all!

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Like Chris, we started to get very concerned when he started school (just a few weeks past 4 years old) - he was obviously behaving differently from all the other children, however, with the benefit of hindsight, the signs were there from the moment he was born - he had sensory issues as a tiny baby (hated being swaddled, or restricted in any way, feeding issues, etc), noticeable developmental issues as a toddler which really ought to have been picked up by the HV, and a "spikey" development profile which pointed to ASD all along....

 

The ASD gene is quite obvious in the men of my family - in fact my mother took my brother to the dr in 1971 asking about autism due to his obsessive & self-harming behaviours, but was told that as he spoke well and on time, he couldn't be autistic.....

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Hi Kez thanks for your reply. What age was your son diagnosed with autism? Glen was 7 so quite late really I do wish he had been diagnosed much earlier, I had to fight for years for a diagnosis.

 

Glen's dad (my ex) and his dad both had speech problems, in fact my ex's dad did not speak until he was about 13! My eldest son (26) also had a speech delay and went into a speech and language unit at age 5 for just over a year, and he progressed brilliantly there, however I feel to this dad that he has some autism traits. So like you it seems all the males in the family are affected by autism or traits of it anyway.

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We do have pictures of our son smiling and laughing as a baby and toddler. But as he became older, he seemed to lose that ability and is now unable to monitor his own facial expressions anymore, and if you asked him to smile for a photograph he would give a very unnatural grimmace - like he had forgotten how to smile.

Can he smile naturally though? Like if he's happy and not thinking about it?

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Hi Darkshine my son Glen smiles naturally when he's not thinking about it. It's so lovely to see his smile as he did go through quite a spell without smiling at all. Its all thanks to the care home that he now seems much more relaxed and happier in himself. :-)

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Hi JeanneA

 

My son wasn't actually dx'd until he was 7 - but that was due to the totally obstructive attitude of his school. We spent two years fighting them and arguing with them and dragging information out of them, then just as we were finally getting somewhere I moved him to another school for the start of year 2, and had to start the process again with a new EP etc as it was in a different ward!

 

The move was very traumatic for everyone involved, and was my first "appeal" to the LEA - but by far the best thing we could do at the time. The new school (only 1 mile away) was the opposite of the old one: co-operative, communicative and supportive. DS was dx'd within the first year there.

 

He also can not smile on cue - ie for a photo (he also makes the worst type of grimace), but he does smile and laugh while playing:)

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I too wished my son had been diagnosed earlier. Concerns were raised when he was 3, but the nursery refused to let the HV observe him whilst in nursery [she did see him at home]. And the GP said that children develop at different rates, and that if there was a problem it would get picked up at school.

 

But the whole point was that I knew he was not prepared for school. Like your son JeanneA, it meant my son was quite traumatised at school. Before he started school I did tell his class teacher that I had concerns, that he was hardly talking at all, did not appear to understand me, would get very upset about things, could not hold a pencil, had never drawn anything in his life and got distraught if asked to have a go.

 

When I did the Freedom of Information Act search, I found out that his school had arranged for the SENCO to observe him just 4 months after he started school. So they did act quite quickly. But it took 4 months before the SALT saw him, and she referred him onto the Developmental Paediatrician and Clinical Psychology. They took another 18 months to diagnose him. By then he was 6, and I moved him to another school because he was on the point of refusing to attend that one. The school I moved him to was enhanced resource for autism - but even that was not enough.

 

What really shocked and upset me about the search was that the EP and Autism Advisory Teacher had told the LA Inclusion Officer that it was their opinion that he should be in an autism unit. And the Inclusion Officer decided to ignore that advice and they fought tooth and nail to keep him mainstream. But, I suppose, that [along with many other incidents] eventually led to us winning our Tribunal case. But I just cannot understand why they did that. And the fact that they were all emailing eachother with information on how they could avoid providing the provision in his Statement, whilst behaving towards me like they were all concerned and trying to help. It has made me very distrustful of other professional people and their motives.

 

As you say JeanneA, it makes such a difference to everyone to finally have your child somewhere where they appear alot happier.

Edited by Sally44

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Another thing my son used to do was pick up bits of fluff off the carpet, or off fabrics. He seemed to have the sight of an eagle, and was not happy until any bits were removed. He was like a human vaccum cleaner. He did the same if you picked him up. He would remove an eyelash from your face.

 

When he did begin to speak, he would often say inappropriate things eg. "why is that woman walking like that" or "that boy has got alot of spots on his face" or even to the consultant "you smell very bad".

 

He also misprounced alot of words and so we had his hearing tested, and it came back okay. But we were told he probably had an auditory processing disorder. He finds it hard to distingush between sounds like n/m v/f/b etc. And he also mixed up words eg. "your opponents" would become "raponents", "prepared" would become "repaired" [and that changed the meaning of what he was trying to say alot of the time], "it exploded" became "dexploded" "suppose" became "posed" and "computer" became "puter". It was like he did not know where individual words started and ended. So he did not appear to learn individual words and their meaning. He appeared to learn whole sentences and have an idea of what that sentence as a whole meant.

 

And bearing in mind how bad his language aquisition was, I was not at all surprised that he struggled to understand phonics, and even now is not reading or writing independently.

 

Yet he really loves doing puzzles where a symbol represents a letter. He will work that out and then ask me to read what the secret message says.

Edited by Sally44

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We first had concerns when L was about 10 months old. He was really floppy - he could sit, but not properly and he wasn't crawling etc. He wasn't babbling at all and didn't really respond appropriately to his name. He also did a lot of rocking and flapping, as well as headbanging. He showed no interest in toys that didn't spin or flash. We did think autism but dismissed it because he did give eye contact to us (didn't know the difference between eye contact and appropriate eye contact then). He couldn't deal with solid food, messy hands, and he didn't mouth toys at all.

 

The HV I saw told me I was being ridiculous and was comparing him to his sister who was quite advanced in her speech etc (he was a second child and a boy).

 

We moved back up beside my parents when he was 13 months and I saw the HV there and she thought I was right to be concerned. At 15 months we saw the Paed and he was referred for SALT, physio and OT and at 2 years and 2 months we got his formal diagnosis of autism, global developmental delay, hypotonia and hypermobile joints.

 

He was young, but there was no question about his diagnosis and hasn't been since. He obviously has the co-morbid conditions so didn't walk till he was over 3, didn't talk till he was 6.5, still in nappies at 8.5 etc.

 

Lynne

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Hi Darkshine my son Glen smiles naturally when he's not thinking about it. It's so lovely to see his smile as he did go through quite a spell without smiling at all. Its all thanks to the care home that he now seems much more relaxed and happier in himself. :-)

Yes he can.

 

Thanks you guys for answering my slightly odd question - there's a reason I asked and what Sally said about asking her son to smile for a photo and him doing a grimace - it just really hit me cuz for as long as I remember I did this whenever someone told me to smile (whether for a photo or because they thought I should be smiling).

 

I remember being annoyed that I was requested to pull faces and thinking what's wrong with what my face is doing..

 

Then I'd think well - people look really false when they smile - it looked forced and to be honest people smiling at me used to make me pretty angry sometimes - it still does sometimes.

 

So when asked to smile I'd push my face forwards and I'd pull my lips right back, bare all my teeth and hold it for a couple of seconds only to be frowned at, reprimanded, or simply the person rolling their eyes and turning away like they were exasperated, occasionally people would smile and chuckle at me.

 

Even now people say sometimes "for god sake smile will you" and I find myself still doing my grimace every now and then (mostly I don't react - but occasionally I do forget and pull this stupid face)... the reactions don't change much over the years :lol:

 

I just wondered if a similar thing goes through kids heads like it did with mine - I've only been able to verbalise this as an adult though :rolleyes:

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Thanks so much for all your comments. I can relate so much to each of you regarding your children.

 

Kez if I could start with you, I to had to fight for 2 years when Glen started at School before anyone would listen. Glen had been seen by a paediatrician who though Glen just had a speech delay like his elder brother had at the same. Eventually though the same paediatrician realised that I could be right with thinking Glen maybe autistic and asked Professor Neville from Gt. Ormond Street to come and see Glen which he did and diagnosed him very quickly with autism. I'm glad things worked out for you and your son in the end, but it is a long hard fight isn't it?

 

Sally, so sorry to hear your son was traumatised to with the whole school thing, it must have been such an awful time for him. Like your son mine could not hold a pencil either and would get very upset with the pressure put upon him by the teacher and staff at school, I feel that is a lot of the reason that he stopped talking and became a selective mute.

With what you went through I can well understand why you wouldn't trust professionals!

 

Lynne, sorry to hear you also went through a tough time but I'm really pleased that your son was diagnosed at a very young age. It is just as well you moved near your parents at least it sounds like you saw a much better HV! How is your son doing now?

 

Darkshine, thanks for letting us know about 'the smiling', I understand now why you asked that question. I'm sure you are right about our kids going through the same feelings as you have but they can't express themselves perhaps one day they will be able to.

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I fully understand where Darkshine is coming from with the smiling. I can and do smile when I am happy but I don't go around with a smile on my face. My face in it's natural relaxed state is a bit miserable looking and I spent years getting told "oh smile will you" and the like. Whilst I have never really had eye contact issues that I know of (I always make a point of having good eye contact, maybe the fact I have to make a point of it says more than the fact I am good at it) I do feel I have to force myself to smile appropriately in social situations. I don't like doing it. Infact I find it downright distasteful and uncomfortable. If I have to plaster a fake grin on my face it looks and I feel a fraud.

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hi dekra great to hear from you. I do understand how uncomfortable you must feel when you are 'forced to smile' in social situations, it is totally not fair that you have to do something that you really don't want to do,which I'm sure our kids feel also but aren't able to tell us. I to have found it difficult over the years to smile when I don't want to, it is not nice to feel you are forced into doing this.

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Darkshine, thanks for letting us know about 'the smiling', I understand now why you asked that question. I'm sure you are right about our kids going through the same feelings as you have but they can't express themselves perhaps one day they will be able to.

 

It's intriguing isn't it? I'd love to find out if there's ways that extra levels of communication could be had with children on the spectrum - like ways of putting things so that more could be found out about their experiences.

 

About 7 years ago I used to "baby sit" :rolleyes: (can't think of a better word) a young lad with aspergers, he barely talked to almost everyone, and if he did it'd be single sentences. He was a relative of a friend. For 3 or 4 months that summer he came for a few hours one day a week on most weeks. He's the only kid I really enjoyed being around. He was so easy! We hit it off straight away and he'd go on and on and on about things he liked or didn't like and despite his mother's insistence that he'd be awkward if I tried to make him go out - I found it quite easy to get him to come to the nearby shop for some crisps - I think its cuz we talked the whole way so he didn't have chance to think and worry. Plus I didn't mind hearing all the ins and outs of the latest computer game he was into and why, right down to the minute details of the way the game worked and why it was good.

 

He didn't want me to know he had aspergers, he used to say that there was something he wanted to tell me but couldn't say, after a few weeks he did tell me, but I didn't know what it meant back then. I did notice that we were very similar but never thought more about it.

 

He stopped coming after some family argument between his mum and my friend, and I've only saw him once a year until he was 16 -he's 18 now and I don't see him now because they live miles away and he hasn't really left his room/house for the last couple of years - which is a crying shame because he has so much potential if only everyone else could see that.

 

I fully understand where Darkshine is coming from with the smiling. I can and do smile when I am happy but I don't go around with a smile on my face. My face in it's natural relaxed state is a bit miserable looking and I spent years getting told "oh smile will you" and the like. Whilst I have never really had eye contact issues that I know of (I always make a point of having good eye contact, maybe the fact I have to make a point of it says more than the fact I am good at it) I do feel I have to force myself to smile appropriately in social situations. I don't like doing it. Infact I find it downright distasteful and uncomfortable. If I have to plaster a fake grin on my face it looks and I feel a fraud.

 

I totally agree and understand everything you said but I thought of an exception - for myself at least - I can smile quite fine when I'm having to entertain someone's baby for 10 or 15 minutes - unless the baby is peeing me off and then I can't :lol:

 

I used to really dislike babies, they didn't make any sense and I felt no inclination to be anywhere near one - until my sister had my first nephew and then I found they can be funny things and are quite easily pleased and they don't explode when you pick one up. I don't really like young children either but for some reason they all seem to be fascinated with me - I haven't got a clue why but its like when I'm walking in town and children in pushchairs stare at me a lot... I could never be horrible to them so its something I've gotten better at getting used to... however irritating it is sometimes :lol::D

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I totally agree and understand everything you said but I thought of an exception - for myself at least - I can smile quite fine when I'm having to entertain someone's baby for 10 or 15 minutes - unless the baby is peeing me off and then I can't :lol:

 

I used to really dislike babies, they didn't make any sense and I felt no inclination to be anywhere near one - until my sister had my first nephew and then I found they can be funny things and are quite easily pleased and they don't explode when you pick one up. I don't really like young children either but for some reason they all seem to be fascinated with me - I haven't got a clue why but its like when I'm walking in town and children in pushchairs stare at me a lot... I could never be horrible to them so its something I've gotten better at getting used to... however irritating it is sometimes :lol::D

 

I used to hate babies. They terrified me. I hadn't anything to do with babies since I was about 11 or younger until I had my eldest at 31. You quickly get used to them lol! I still do not particularly like other people's children but over the last 2 weeks I've been around a lot of young babies of complete strangers and as a student nurse been in the privledged position of automatically been trusted to have a cuddle and I loved it. It's probably the maternal instinct and hormones but it's lovely and I love the silly talk I can make naturally with a tiny one and the way they watch you and those that are old enough you can illicit a smile or giggle. Uncomplicated stuff!

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I guess its ok that they don't judge or anything, you can be stupid and they think its funny or something... I still wouldn't want to have to see one any more often than necessary - which is funny because I've been told by so many people that I'd be good working with children in some capacity - and that is still my idea of hell!

 

The moment I like best is when I hand one back to it's parent or family :lol::devil:

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well mine are a totally different kettle of fish!!my 2 eldest have only just been diagnosed,my eldest 18 months ago at age 14 and now my son in feb who again is 14,my youngest of 11 they wont diagnose but say she is very suggestive of asd,so suppose i will have to wait til she is 14!!!strange thing is i suupose because we didnt really notice much befoes they got to about 11ish then it all kikked off,funny it being school transition times they just couldnt cope with,my son had late speech and idint talk til he was 3 but we were told it wasnt asd so we just believed them and his speech came on,my youngest had speech problems and no-one could undertsand her speech properly til she was about 5,my eldest well the only thing i could really say was when she was about 18 months old she put her hands over her ears because she couldnt cope with baby brother crying!! but i was hardly likely to rush to the gp for that,so i think all 3 have just gone through life coping daily and then when it all got too much at puberty they just hit a brick wall! and thats when things started happening,now i have the elder 2 at home nearly 24/7 and the yougnest one cant cope with school and having more time off than being there!on the good side younger 2 are going to cinema this afternoon,but younest one has invited a friend but said 'what do i do because dont know what to talk about in car on way? and there will just be silence' and this is from a child that they wont diagnose!so i suppose we have come into asd very late for all 3 but look upon it as we coped til 4 years ago and will carry on copeing now ,afterall the children are the same now as have always been,they dont change over night because they have diagnosis,have always been loners ,quiet ,shy lacking in confidence,but of course we just thought everyone different and schools never said any problems!

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Hi again jlogan I'm surprised that your children were not diagnosed to they were 14. It seems that they definitely should have been diagnosed much younger so it is a fault of the system thats for sure. Puberty can have a massive affect on our kids that I know with Glen, his behaviour deteriorated rapidly when he hit puberty.

 

The school should have picked up on the fact that there was something wrong years ago, that way you could have got the help you needed a long time ago. I am sorry to hear of your story, I do hope the future will be more promising, you have to keep fighting for the help and support you and your children need. :-)

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strange thing is i suppose because we didnt really notice much befoes they got to about 11ish then it all kikked off,funny it being school transition times they just couldnt cope with,

 

That school transition at 11 was what kicked everything off for me - I just couldn't cope with the secondary school environment at all - life at school went from being simple, structured, safe and small, to this giant confusing place where all the rules were different and so much didn't make sense, it was big, classrooms all over the place and there were over 40 compared to the 2 or 3 at junior school I'd had before. And of course I was then taught by 15 different teachers as opposed to the 1 or 2 before... Then there was a timetable we had to use and I was forever getting lost or forgetting what was next and each year it changed beyond recognition so I'd have to start all over... And the kids!!! It went from being a school with under a hundred kids to a school with 1200!! After 3 years I didn't get lost so much but the timetable was hell. Break times I just used to stand in a corner for most of the time and dinner times were a nightmare and after 3 years my family finally asked for me to be let out of school at lunchtime - I used to feel so happy when I ran out of the gates and got away from the place for an hour - even if I lost half of it by walking to my grandparents house.

 

But yeah, 11 is a very clear moment in my life where things went from kinda ok (comparatively) to absolute hell...

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