The autism thread
Discussion
I'm sensing from the other recent thread about the rise in autism that there are a number of people here with experience of autism, and many more that would appreciate somewhere to discuss those experiences and ask questions. So rather than derail the other thread, I thought I'd create this one.
So, my story in brief...
Our first daughter Victoria was born in June 2013 and apart from being an emergency C-Section everything seemed to be normal. She was a little behind in most milestones in the early months, but everyone told us not to worry, all kids develop at different rates etc. She first walked at 18 months for example which, whilst late, isn't completely unusual. She was always such a good baby too, rarely cried, slept through the night from a very early age, never touched anything she shouldn't. People told us we were lucky...
My wife hasn't returned to work since having Victoria so we felt she could do with interaction with other children, so she started pre-school when she was 2, and it was there that her key-worker highlighted that she was behind where she should be. We didn't need telling though. Despite others in the family saying all kids are different, we knew she was behind other kids of her age, wasn't communicating as they were, and was basically in her own little world. So we set off on the path to get a diagnosis.
Three years later (she was 5 in June), and yesterday we had it confirmed that she does indeed have autism. Despite being something we have known for a while in our hearts, it was a shock to see it written in black and white on the doctor's screen yesterday.
A couple of things we've learned along the journey so far:
- The process to get a diagnosis is long and tedious, and we weren't really told what would happen after each stage, which turned out to be roughly:
1. Initial assessment
2. Second assessment after 6 months to see if she was developing
3. Genetic testing - I thought this was to identify/rule out other genetic issues, but was told yesterday that 20% of autism cases can be diagnosed with genetic testing. It may be in the future that more cases can be as the testing improves
4. Speech, language and communications assessments - I thought these were simply as described but found out yesterday that these followed a proscribed and well used method for diagnosing autism
5. The "final assessment" - we believed this to be a final assessment of Victoria by an expert in autism in order to come up with a diagnosis. Actually, it was a meeting with said expert to discuss the diagnosis that he, with a panel of other professionals) came up with a few weeks ago.
The paediatrician we saw yesterday was very good, explained everything well and will be sending us and Victoria's school and written confirmation of the diagnosis shortly.
What we're not really sure of, and this may sound strange, but what happens next?
We know that we want to learn as much about the condition in order to give her the best start in life we can. We have some leaflets from a local support group and with links to various autism charities etc so I guess we start there. We also need to speak to the school as I believe this now means they can get extra funding to give her the extra support she needs.
FWIW Victoria is the sweetest, funniest little girl (biased much?). She is so popular in school and although shows many of the traits of autism (lack of eye contact, struggles to talk sometimes, hand-flapping/rocking) she also does things that amaze me and are not what I'd expect from someone with autism (eg performing on stage at a theatre with her dance class).
18 months ago our second daughter (Emily) was born. We are currently experiencing things for the first time and feel like new parents in some ways... we never had "the terrible twos" with Victoria and Emily is into everything, just like a "normal" 18 month old.
Anyway, that's our story in brief. I'd appreciate any thoughts on those first steps we should be taking now, and any advice from people that have trodden the path we are on.
TIA
ETA I know some are cynical about autism, believe it is just an excuse for lazy parents or benefits. Feel free to read this thread and learn but this isn't the place to share that cynicism thanks.
So, my story in brief...
Our first daughter Victoria was born in June 2013 and apart from being an emergency C-Section everything seemed to be normal. She was a little behind in most milestones in the early months, but everyone told us not to worry, all kids develop at different rates etc. She first walked at 18 months for example which, whilst late, isn't completely unusual. She was always such a good baby too, rarely cried, slept through the night from a very early age, never touched anything she shouldn't. People told us we were lucky...
My wife hasn't returned to work since having Victoria so we felt she could do with interaction with other children, so she started pre-school when she was 2, and it was there that her key-worker highlighted that she was behind where she should be. We didn't need telling though. Despite others in the family saying all kids are different, we knew she was behind other kids of her age, wasn't communicating as they were, and was basically in her own little world. So we set off on the path to get a diagnosis.
Three years later (she was 5 in June), and yesterday we had it confirmed that she does indeed have autism. Despite being something we have known for a while in our hearts, it was a shock to see it written in black and white on the doctor's screen yesterday.
A couple of things we've learned along the journey so far:
- The process to get a diagnosis is long and tedious, and we weren't really told what would happen after each stage, which turned out to be roughly:
1. Initial assessment
2. Second assessment after 6 months to see if she was developing
3. Genetic testing - I thought this was to identify/rule out other genetic issues, but was told yesterday that 20% of autism cases can be diagnosed with genetic testing. It may be in the future that more cases can be as the testing improves
4. Speech, language and communications assessments - I thought these were simply as described but found out yesterday that these followed a proscribed and well used method for diagnosing autism
5. The "final assessment" - we believed this to be a final assessment of Victoria by an expert in autism in order to come up with a diagnosis. Actually, it was a meeting with said expert to discuss the diagnosis that he, with a panel of other professionals) came up with a few weeks ago.
The paediatrician we saw yesterday was very good, explained everything well and will be sending us and Victoria's school and written confirmation of the diagnosis shortly.
What we're not really sure of, and this may sound strange, but what happens next?
We know that we want to learn as much about the condition in order to give her the best start in life we can. We have some leaflets from a local support group and with links to various autism charities etc so I guess we start there. We also need to speak to the school as I believe this now means they can get extra funding to give her the extra support she needs.
FWIW Victoria is the sweetest, funniest little girl (biased much?). She is so popular in school and although shows many of the traits of autism (lack of eye contact, struggles to talk sometimes, hand-flapping/rocking) she also does things that amaze me and are not what I'd expect from someone with autism (eg performing on stage at a theatre with her dance class).
18 months ago our second daughter (Emily) was born. We are currently experiencing things for the first time and feel like new parents in some ways... we never had "the terrible twos" with Victoria and Emily is into everything, just like a "normal" 18 month old.
Anyway, that's our story in brief. I'd appreciate any thoughts on those first steps we should be taking now, and any advice from people that have trodden the path we are on.
TIA
ETA I know some are cynical about autism, believe it is just an excuse for lazy parents or benefits. Feel free to read this thread and learn but this isn't the place to share that cynicism thanks.
Edited by wiggy001 on Saturday 5th January 19:45
Many thanks for these initial posts - as expected the condition is a lot more common that you would believe. I've been surprised at the number of people I've spoken to recently that have autism, care for someone with autism or know someone with the condition.
We live near Swanley in Kent so we are under the Dartford and Gravesham NHS (although the meeting to discuss the diagnosis on Friday was in Coxheath, near Maidstone). We was show a "scale" which placed Victoria on the line between "moderate" and "severe" on this scale. Over the course of the assessment questionnaires were completed by the speech and language professionals, her teachers (at the end of her reception year last summer) and us. Interestingly the scoring suggested that we saw the autism as less severe than the professionals. I guess that might be us trying to think the best of every situation that was asked about.
Having read a lot of stories on here and elsewhere, Victoria's autism seems extremely mild compared to others. Part of the reason for her early diagnosis is that we pushed hard for the referral at a young age. Her pre-school key worker has a son with autism so was very aware of the signs and we took the view that we wanted to know as much as possible as soon as possible to give her the best support we could. We were also very aware of how long the process takes, so didn't want to wait.
Victoria's speech is very good - she can say words and sentences clearly and reads books aloud very well. Where she struggles is with conversation; more often that not she will struggle to get words that she wants to say out (early on I thought it might be a stammer). She can then get stressed and frustrated because of this and then her behaviour may deteriorate to the point of trying to hurt us (scratching, hitting, pushing etc). We are learning how to diffuse these situations but she has taken this out on her little sister on a couple of occasions.
Victoria also has an awesome memory. She could recite the alphabet before most of her peers and from a young age would appear to read books. I say "appear" because she would "read" the billy goats gruff (for example) by remembering the words to say on each page rather than reading the words. That said, the school have done an excellent job with her reading and she is now able to read better than many of her peers, and can sound out new words and quickly remembers them if we correct her. Her class are currently being given laminated lists of words to learn as part of their "homework" - Victoria reads the list out first time before she's even left the classroom most times.
So all in all and compared to others we currently have it easy. That doesn't mean it is easy of course. My mum has very steep stairs in her Victoria cottage so instinctively goes down the first in front of Victoria - this is wrong! Victoria must always walk up and down stairs in front of you. It's her thing. In fact, most things we do have to be done in a certain order or she becomes stressed, tearful, argumentative and violent. I am going to Belfast for a couple of days tomorrow (something I do semi-regularly for work). I told Victoria about this this morning. To most people that seems normal, but it has taken a long time for us to work out the "optimum" time to tell her when something new is happening (school trip, staying with family, family visiting etc). If I had told her yesterday she would keep talking about it and become anxious. If change comes as a surprise it greatly stresses her out. A day and a half is about the right amount of time for her... something so simple has taken years to understand and get right...
We are also well aware that autism isn't "static" and we will face challenges as she grows older. I guess that's why I started this thread, to share those experiences. It's also quite cathartic for me to put things down.
We live near Swanley in Kent so we are under the Dartford and Gravesham NHS (although the meeting to discuss the diagnosis on Friday was in Coxheath, near Maidstone). We was show a "scale" which placed Victoria on the line between "moderate" and "severe" on this scale. Over the course of the assessment questionnaires were completed by the speech and language professionals, her teachers (at the end of her reception year last summer) and us. Interestingly the scoring suggested that we saw the autism as less severe than the professionals. I guess that might be us trying to think the best of every situation that was asked about.
Having read a lot of stories on here and elsewhere, Victoria's autism seems extremely mild compared to others. Part of the reason for her early diagnosis is that we pushed hard for the referral at a young age. Her pre-school key worker has a son with autism so was very aware of the signs and we took the view that we wanted to know as much as possible as soon as possible to give her the best support we could. We were also very aware of how long the process takes, so didn't want to wait.
Victoria's speech is very good - she can say words and sentences clearly and reads books aloud very well. Where she struggles is with conversation; more often that not she will struggle to get words that she wants to say out (early on I thought it might be a stammer). She can then get stressed and frustrated because of this and then her behaviour may deteriorate to the point of trying to hurt us (scratching, hitting, pushing etc). We are learning how to diffuse these situations but she has taken this out on her little sister on a couple of occasions.
Victoria also has an awesome memory. She could recite the alphabet before most of her peers and from a young age would appear to read books. I say "appear" because she would "read" the billy goats gruff (for example) by remembering the words to say on each page rather than reading the words. That said, the school have done an excellent job with her reading and she is now able to read better than many of her peers, and can sound out new words and quickly remembers them if we correct her. Her class are currently being given laminated lists of words to learn as part of their "homework" - Victoria reads the list out first time before she's even left the classroom most times.
So all in all and compared to others we currently have it easy. That doesn't mean it is easy of course. My mum has very steep stairs in her Victoria cottage so instinctively goes down the first in front of Victoria - this is wrong! Victoria must always walk up and down stairs in front of you. It's her thing. In fact, most things we do have to be done in a certain order or she becomes stressed, tearful, argumentative and violent. I am going to Belfast for a couple of days tomorrow (something I do semi-regularly for work). I told Victoria about this this morning. To most people that seems normal, but it has taken a long time for us to work out the "optimum" time to tell her when something new is happening (school trip, staying with family, family visiting etc). If I had told her yesterday she would keep talking about it and become anxious. If change comes as a surprise it greatly stresses her out. A day and a half is about the right amount of time for her... something so simple has taken years to understand and get right...
We are also well aware that autism isn't "static" and we will face challenges as she grows older. I guess that's why I started this thread, to share those experiences. It's also quite cathartic for me to put things down.
It's been a long day and I'm about to crash for the night but I just wanted to make a few quick points:
- The reaction and contribution to this thread has been amazing. I toyed with whether I should start it or not as usually I'm a very private person. But on this subject I honestly believe the more we talk the more we, and others, understand. I also wasn't sure how many people would want to add their thoughts, advice and stories. So thank you for contributing and thank you for the positive comments regarding me starting the thread.
- I downloaded a number of TED talks on autism for the flight today - there's some good stuff there that's pretty short and easy to digest so well worth watching when you have a spare 5 to 20 minutes. I found the talk by Wendy Chung about the causes of autism and the research going on interesting, as was Rosie King's (paraphrasing: "why do we seem to strive for people to be "normal"? ")
- Thanks Irish Boy for the offer of coffee... as I'm only here for 2 days my diary is rammed but I might take you up on that offer another time (I have a team here now so this will be a regular trip)
Thanks again
- The reaction and contribution to this thread has been amazing. I toyed with whether I should start it or not as usually I'm a very private person. But on this subject I honestly believe the more we talk the more we, and others, understand. I also wasn't sure how many people would want to add their thoughts, advice and stories. So thank you for contributing and thank you for the positive comments regarding me starting the thread.
- I downloaded a number of TED talks on autism for the flight today - there's some good stuff there that's pretty short and easy to digest so well worth watching when you have a spare 5 to 20 minutes. I found the talk by Wendy Chung about the causes of autism and the research going on interesting, as was Rosie King's (paraphrasing: "why do we seem to strive for people to be "normal"? ")
- Thanks Irish Boy for the offer of coffee... as I'm only here for 2 days my diary is rammed but I might take you up on that offer another time (I have a team here now so this will be a regular trip)
Thanks again
I thought I'd post a quick update on this thread.
Last week we received the written diagnosis. Like hearing it from the specialist it was quite hard to read in black and white, despite us knowing Victoria had autism for a number of years. Along with the diagnosis were a number of recommendations for the types of support Victoria would benefit from at school, and support for us as parents, so more useful than a simple "she has autism" letter.
My wife attended a meeting with the school last week, which is a regular meeting between the SENCO, Victoria's teacher and an external "special needs" teacher that has been monitoring Victoria's progress in school for some time. When told of the diagnosis the school stated that they didn't need to do anything in order to secure additional funding and there is nothing they could do with more money that they weren't already doing! This surprised us a little as I thought schools were crying out for money, and we know Victoria is getting a lot of extra attention/one to one tuition etc. They did of course say that this may change in the future but until then we just carry on, albeit they now have some better direction to take now they have a diagnosis.
It's a strange feeling at the moment. I feel like I should be doing something with the information (diagnosis) we now have, but short of learning as much as we can about the condition there's little practically we feel we can do. I'm sure that will change as things sink in properly and we begin to understand the "known unknowns" as it were.
Last week we received the written diagnosis. Like hearing it from the specialist it was quite hard to read in black and white, despite us knowing Victoria had autism for a number of years. Along with the diagnosis were a number of recommendations for the types of support Victoria would benefit from at school, and support for us as parents, so more useful than a simple "she has autism" letter.
My wife attended a meeting with the school last week, which is a regular meeting between the SENCO, Victoria's teacher and an external "special needs" teacher that has been monitoring Victoria's progress in school for some time. When told of the diagnosis the school stated that they didn't need to do anything in order to secure additional funding and there is nothing they could do with more money that they weren't already doing! This surprised us a little as I thought schools were crying out for money, and we know Victoria is getting a lot of extra attention/one to one tuition etc. They did of course say that this may change in the future but until then we just carry on, albeit they now have some better direction to take now they have a diagnosis.
It's a strange feeling at the moment. I feel like I should be doing something with the information (diagnosis) we now have, but short of learning as much as we can about the condition there's little practically we feel we can do. I'm sure that will change as things sink in properly and we begin to understand the "known unknowns" as it were.
I've become one of them. One of those people that go to support groups. You know, those poor sods that can't look after themselves and need a group of strangers to give them an emotional pat on the back...
That's what I thought as I drove to the Father's Support Group, an offshoot of a wonderful charity called We Are Beams based in the next village to me. But I don't care... I spent nearly four hours just shooting the breeze with 9 or 10 like minded men. Fathers and grandfathers of children and young adults with autism.
I didn't come out of there with any answers but to be honest I didn't go in with any questions (other than "what am I doing?!"). But I did come out knowing that there are a group of blokes local to me going through the things I am and probably will go through and that helps a lot. As much as threads like this can give reassurance, it's not a fraction of what you feel speaking face to face with normal people over a lemonade and a Club biscuit (I didn't even know they existed still!).
And it does seem that there are a lot of resources in my area that we can and will make use of, and the 2 guys that run this group seem pretty well connected if we ever need a door opened to a expert's office, which is good to know.
Interestingly, the 2 guys that run this group are not "experts" in this field. They don't profess to be. One is a father and the other a grandfather to autistic children/young adults and they have experience, an open door and the time to listen.
If anyone reads this and thinks such groups are not for them all I would say is give it a go and you might be pleasantly surprised. If nothing else, we had 4 hours away from the stresses of home and quite a few laughs along the way. I will certainly be going back in March at the next meeting.
That's what I thought as I drove to the Father's Support Group, an offshoot of a wonderful charity called We Are Beams based in the next village to me. But I don't care... I spent nearly four hours just shooting the breeze with 9 or 10 like minded men. Fathers and grandfathers of children and young adults with autism.
I didn't come out of there with any answers but to be honest I didn't go in with any questions (other than "what am I doing?!"). But I did come out knowing that there are a group of blokes local to me going through the things I am and probably will go through and that helps a lot. As much as threads like this can give reassurance, it's not a fraction of what you feel speaking face to face with normal people over a lemonade and a Club biscuit (I didn't even know they existed still!).
And it does seem that there are a lot of resources in my area that we can and will make use of, and the 2 guys that run this group seem pretty well connected if we ever need a door opened to a expert's office, which is good to know.
Interestingly, the 2 guys that run this group are not "experts" in this field. They don't profess to be. One is a father and the other a grandfather to autistic children/young adults and they have experience, an open door and the time to listen.
If anyone reads this and thinks such groups are not for them all I would say is give it a go and you might be pleasantly surprised. If nothing else, we had 4 hours away from the stresses of home and quite a few laughs along the way. I will certainly be going back in March at the next meeting.
I thought it was worth a quick update on this thread, as today was another first for me.
I've always been proud of the fact that I have never claimed any benefits since starting work at 18 (I'm 40 next month). I'm not sure why I'm "proud" of this fact because benefits are there to help you when you need them and I'm just lucky that I never have. I have no negative thoughts against those that do, indeed my mum needed to for a time when I was a teenager and she was unable to work. But that said, I'm a proud man who can provide for my family.
So I shocked myself this morning. My wife suggested we take our girls swimming. There's a leisure centre not too far from us with several pools, lazy river etc that I've taken Victoria (who has autism) before. Just before getting in the car I remembered something from the support group I mentioned previously: many leisure facilities offer concessions for those with autism and their "carers". Now, I'm not a "carer". I'm a father. And I can afford £18 for 4 of us to go swimming for an hour. So it felt very unnatural to ask if they could do anything for us. But the lady on the phone couldn't have been nicer. She explained that as a "carer" I could go for free, I just had to take her diagnosis letter or similar.
The lady on reception remembered our call when we arrived, took Victoria's details and gave us a card allowing us the same free entry for a "carer" at any time.
So why am I telling you this? I guess it's because it feels very strange and alien to me. Why should I go for free when before the diagnosis I was happy to pay? Well, the only "justification", if any is needed, is twofold:
- If Victoria didn't have autism one of us could and would have taken both girls swimming, but that is just not possible with Victoria.
- One of us could need to leave after a few minutes of being there. It would only need for something to not be "right" and the resulting meltdown would have us leaving pretty quickly.
The thing I hate most is that we've all seen that family go to the front of the queue at a theme park when there appears to be nothing wrong with any of them. We've had that jealous side-glance wondering why others always get all the luck and those that work hard and pay their way get nothing. I deeply regret ever being so naive now I am one of those people.
Anyone else been through this and have similar thoughts?
I've always been proud of the fact that I have never claimed any benefits since starting work at 18 (I'm 40 next month). I'm not sure why I'm "proud" of this fact because benefits are there to help you when you need them and I'm just lucky that I never have. I have no negative thoughts against those that do, indeed my mum needed to for a time when I was a teenager and she was unable to work. But that said, I'm a proud man who can provide for my family.
So I shocked myself this morning. My wife suggested we take our girls swimming. There's a leisure centre not too far from us with several pools, lazy river etc that I've taken Victoria (who has autism) before. Just before getting in the car I remembered something from the support group I mentioned previously: many leisure facilities offer concessions for those with autism and their "carers". Now, I'm not a "carer". I'm a father. And I can afford £18 for 4 of us to go swimming for an hour. So it felt very unnatural to ask if they could do anything for us. But the lady on the phone couldn't have been nicer. She explained that as a "carer" I could go for free, I just had to take her diagnosis letter or similar.
The lady on reception remembered our call when we arrived, took Victoria's details and gave us a card allowing us the same free entry for a "carer" at any time.
So why am I telling you this? I guess it's because it feels very strange and alien to me. Why should I go for free when before the diagnosis I was happy to pay? Well, the only "justification", if any is needed, is twofold:
- If Victoria didn't have autism one of us could and would have taken both girls swimming, but that is just not possible with Victoria.
- One of us could need to leave after a few minutes of being there. It would only need for something to not be "right" and the resulting meltdown would have us leaving pretty quickly.
The thing I hate most is that we've all seen that family go to the front of the queue at a theme park when there appears to be nothing wrong with any of them. We've had that jealous side-glance wondering why others always get all the luck and those that work hard and pay their way get nothing. I deeply regret ever being so naive now I am one of those people.
Anyone else been through this and have similar thoughts?
Quick update from me in case anyone has any advice.
Things have been pretty good since my last update and it's felt like we have been "accommodating" Victoria's autism pretty well. The meltdowns have been less frequent as we are learning to spot them before the develop and use diversion techniques to stop them occurring. Not all the time of course, but much more often.
So it was heart-wrenching to hear from my wife whilst at work the other day that Victoria had pushed her little sister out of her high chair.
In the past Victoria has lashed out. For example, her sister Emily might walk up to her for a cuddle and Victoria will push her away sometimes. I guess her space is being suddenly invaded and she reacts in the only way she knows. So again we've been getting better at spotting the signs and avoiding such situations. But this one could be predicted. Emily was put in her high chair and my wife walked the 4 paces to the kitchen side to fetch her lunch. In that time Victoria had gone up to Emily and pushed the whole high chair over! She was calm and fine just moments before so this was completely unprovoked as far as we can tell.
Just part of the daily struggle of a child with autism or something we could have avoided?
Things have been pretty good since my last update and it's felt like we have been "accommodating" Victoria's autism pretty well. The meltdowns have been less frequent as we are learning to spot them before the develop and use diversion techniques to stop them occurring. Not all the time of course, but much more often.
So it was heart-wrenching to hear from my wife whilst at work the other day that Victoria had pushed her little sister out of her high chair.
In the past Victoria has lashed out. For example, her sister Emily might walk up to her for a cuddle and Victoria will push her away sometimes. I guess her space is being suddenly invaded and she reacts in the only way she knows. So again we've been getting better at spotting the signs and avoiding such situations. But this one could be predicted. Emily was put in her high chair and my wife walked the 4 paces to the kitchen side to fetch her lunch. In that time Victoria had gone up to Emily and pushed the whole high chair over! She was calm and fine just moments before so this was completely unprovoked as far as we can tell.
Just part of the daily struggle of a child with autism or something we could have avoided?
Premature said:
Recently
As others have said, this doesn't sound like autism to me in my limited experience, mainly because these changes are recent and after an event. Autism isn't something you develop - it's part of who you are so is with you from birth. I therefore think you would have noticed things before now.solo2 said:
My son, 14 later this year was diagnosed in February 2017 with Asperger's. He has always been a bit different and has become more noticeable as he has got older. Now I know what the sings were they were always there but his Primary school instead blamed his social skills on my parenting.
What I'm struggling with right now is trying to get my son an EHCP so that the school he goes to has some funding to help him but my local council Sutton will not give any child like him an EHCP. His education is being affected and instead of becoming a useful member of society and holding down a job when he is older is steadily moving into never being able to be employed and spending his life on benefits and having no self worth.
The real salt in the wounds here is that about a year ago a small independent school opened less than quarter of a mile from us (still within London Borough of Sutton) especially for kids with autism but you have to have an EHCP to get in. Guess what - not a single child who lives in Sutton goes there. My son would flourish there but I feel powerless to help him.
I'm no expert on this (we haven't gone down this route yet as Victoria luckily goes to a really good school with good provision already) but there is a lot of info online (eg here) on the criteria and the law around EHCPs.What I'm struggling with right now is trying to get my son an EHCP so that the school he goes to has some funding to help him but my local council Sutton will not give any child like him an EHCP. His education is being affected and instead of becoming a useful member of society and holding down a job when he is older is steadily moving into never being able to be employed and spending his life on benefits and having no self worth.
The real salt in the wounds here is that about a year ago a small independent school opened less than quarter of a mile from us (still within London Borough of Sutton) especially for kids with autism but you have to have an EHCP to get in. Guess what - not a single child who lives in Sutton goes there. My son would flourish there but I feel powerless to help him.
Don't back down on this... it's too important to let the LA turn you down for illegitimate reasons.
Good luck.
I became aware that The Autism Show is happening next weekend in London - anyone have any thoughts on it?
I might go (nothing to lose) just to see if I learn anything, but wondered if anyone had been to anything similar.
I might go (nothing to lose) just to see if I learn anything, but wondered if anyone had been to anything similar.
Since Victoria's diagnosis I've been trying to learn what I can about the condition. Just wanted to share that Ten things every child with autism wishes you knew is an excellent book in my opinion.
Easy to read, but on everything page I'm nodding, agreeing and realising why Victoria does the things she does!
Well recommended for anyone that wants to understand the condition more from a real-world point of view.
Easy to read, but on everything page I'm nodding, agreeing and realising why Victoria does the things she does!
Well recommended for anyone that wants to understand the condition more from a real-world point of view.
MattCharlton91 said:
O.P - I wish you all the best for you and your family mate!
We have friends with autistic children (all four of them, in varying degrees of severity) and I’ll openly say, at first I was a bit predjudiced as of what to expect with them, mostly through my own lack of intelligence. But what lovely kids they are, kind, caring, helpful, funny. Obviously there are things they struggle with, but generally they are good kids, and rarely create problems, but when they do, they go BIG!
Victoria sounds like a fantastic little girl, and you sound like you’re doing a great job! I don’t think autism is anything to be worried about, especially with all the information and help on hand these days, I just think it means they need just that little bit more care and attention, and hey, that’s no bad thing right?!
As long as your little girl is on the whole a happy, healthy kid, they’re alright chap!
Thank you for posting this, it is genuinely very much appreciated.We have friends with autistic children (all four of them, in varying degrees of severity) and I’ll openly say, at first I was a bit predjudiced as of what to expect with them, mostly through my own lack of intelligence. But what lovely kids they are, kind, caring, helpful, funny. Obviously there are things they struggle with, but generally they are good kids, and rarely create problems, but when they do, they go BIG!
Victoria sounds like a fantastic little girl, and you sound like you’re doing a great job! I don’t think autism is anything to be worried about, especially with all the information and help on hand these days, I just think it means they need just that little bit more care and attention, and hey, that’s no bad thing right?!
As long as your little girl is on the whole a happy, healthy kid, they’re alright chap!
I must say that since creating this thread in January things are, on the whole, a lot better and more positive than back then. At the time it was all new and daunting, and I was very much going through the "grieving" stage (thinking more about what we had lost than what we had to gain).
We still have major issues at times, and things we (well, my wife who deals with it more than me) struggle with. But on the whole Victoria is a kind, funny, beautiful little girl who we are very proud of. Getting top of her class on the recent phonics tests and standing in assembly to say her part in a story about dinosaurs are 2 recent examples of things we couldn't see happening 6 months ago because our vision was so clouded by the negative. It helps that we've been lucky to send her to a school that, unknown to us at the time we applied, is very accommodating and proactive to Victoria's autism.
In January I asked my wife a very difficult question: would be take away Victoria's autism if we could. I said no but my wife said yes. Now we are both in agreement that we wouldn't have her any other way.
If anyone reading this has had a diagnosis recently just take one thing from this thread - it only gets easier and it's not as bad as it seems now.
Firstly, can I just say how pleased I am to see other PHers getting benefit from this thread. If it is of use to just one person (other than me!) then it was worth starting.
I've been meaning to post an update for a few days now - seeing the last couple of posts about schools has given me the push to actually do it. In my last post at the start of the summer I said things were pretty good...
So, long story short, the summer holidays were pretty tough. The lack of routine did not sit well with Victoria and although we had a great week away in Cornwall (great but not relaxing!) we were longing for the return to school. V loves school, always has, and has transitioned well between years without issue. Up until now...
We are in a situation now where V has a teacher (year 2) than doesn't appear to "accommodate" her autism at all. Seemingly little things like allowing V a tiny amount of blackcurrant in her water bottle (she will only drink blackcurrant) have been met with "it's against school policy", even though we had acceptance of this last year. We had a meeting with her teacher and the family liaison at the school and set some expectations all round and mutually agreed a few points that might help V (allowing her 5 mins "break out" a couple of times a day, giving her longer to read and understand a homework book before she is quizzed on it, sticking to known routines). All of which seem to have gone out of the window within days of being agreed ("don't worry that she doesn't have her book, just pick another one"). This was after we accidentally found out V had been hit by another child (that we believe is on the spectrum too) - the school weren't going to inform us at all!).
But I don't want this to be a negative post. So...
We have just had a meeting with a lovely and knowledgeable lady at Beams (a local charity supporting families with autism and similar). We have a meeting with the Senco on Tuesday, Parents' Evening the week after and a meeting with the special needs teacher than comes to view/assess V every term just after that. Things are moving in the right direction and although it's been a difficult few months, it feels like we are slowly starting to understand this journey we are on rather than just being passengers.
If anyone has any thoughts, comments or advice about the issues with schools, transitioning between years or anything else even vaguely related, I'm sure there are many than would benefit from sharing.
I've been meaning to post an update for a few days now - seeing the last couple of posts about schools has given me the push to actually do it. In my last post at the start of the summer I said things were pretty good...
So, long story short, the summer holidays were pretty tough. The lack of routine did not sit well with Victoria and although we had a great week away in Cornwall (great but not relaxing!) we were longing for the return to school. V loves school, always has, and has transitioned well between years without issue. Up until now...
We are in a situation now where V has a teacher (year 2) than doesn't appear to "accommodate" her autism at all. Seemingly little things like allowing V a tiny amount of blackcurrant in her water bottle (she will only drink blackcurrant) have been met with "it's against school policy", even though we had acceptance of this last year. We had a meeting with her teacher and the family liaison at the school and set some expectations all round and mutually agreed a few points that might help V (allowing her 5 mins "break out" a couple of times a day, giving her longer to read and understand a homework book before she is quizzed on it, sticking to known routines). All of which seem to have gone out of the window within days of being agreed ("don't worry that she doesn't have her book, just pick another one"). This was after we accidentally found out V had been hit by another child (that we believe is on the spectrum too) - the school weren't going to inform us at all!).
But I don't want this to be a negative post. So...
We have just had a meeting with a lovely and knowledgeable lady at Beams (a local charity supporting families with autism and similar). We have a meeting with the Senco on Tuesday, Parents' Evening the week after and a meeting with the special needs teacher than comes to view/assess V every term just after that. Things are moving in the right direction and although it's been a difficult few months, it feels like we are slowly starting to understand this journey we are on rather than just being passengers.
If anyone has any thoughts, comments or advice about the issues with schools, transitioning between years or anything else even vaguely related, I'm sure there are many than would benefit from sharing.
A very quick update from me. Following on from my previous post about the issues we'd had with Victoria's school I have a simple message: a couple of simple conversations with the right people can make a world of difference!
Since my last post we have had a meeting with the SENCO (who brought in another teacher we'd not met before who has knowledge in this area and I think is being lined up as a new/additional SENCO). We have also had parents' evening and then a meeting with the SENCO and an external specialist who observes Victoria each term and creates a plan for her/her teachers.
And all three meetings were very positive! We laid out our concerns in the first meeting which were relayed to Victoria's teacher and have seen an immediate transformation. Victoria is back to being happy to go to school, there are no arguments about what she drinks and her teacher is doing more to ensure consistency and routine and advising when there are changes.
Parents' evening as a result went really well and we learned a lot about how Victoria is progressing that we just don't get from talking to her. And she is progressing, which is the main thing for us (we know she is behind, and that is fine as we are all different, but she must always progress in one form or another).
So I just wanted to say that when things seem terrible and the system is against you, a rational honest conversation with the right person can make all the difference. I would also say that the support of our local charity Beams has been invaluable and we are now signed-up members. A £30 donation for membership is more than fair when they've already given us around 5 hours of their time.
We are also due to start their "Cygnets" course on monday, which is a 6/7 week course about autism which is very highly regarded by everyone that we've met that has done it. I never thought I'd need a training course to help us raise our children but what I am learning more and more about parenthood is that, unlike IT (my trade) I really can't control the direction life takes and just need to be willing to make continual adjustments to our life and our plans... not easy when you're a programmer by trade who knows that if something suddenly changes its behaviour their is a rational and logical reason that can be resolved...
Since my last post we have had a meeting with the SENCO (who brought in another teacher we'd not met before who has knowledge in this area and I think is being lined up as a new/additional SENCO). We have also had parents' evening and then a meeting with the SENCO and an external specialist who observes Victoria each term and creates a plan for her/her teachers.
And all three meetings were very positive! We laid out our concerns in the first meeting which were relayed to Victoria's teacher and have seen an immediate transformation. Victoria is back to being happy to go to school, there are no arguments about what she drinks and her teacher is doing more to ensure consistency and routine and advising when there are changes.
Parents' evening as a result went really well and we learned a lot about how Victoria is progressing that we just don't get from talking to her. And she is progressing, which is the main thing for us (we know she is behind, and that is fine as we are all different, but she must always progress in one form or another).
So I just wanted to say that when things seem terrible and the system is against you, a rational honest conversation with the right person can make all the difference. I would also say that the support of our local charity Beams has been invaluable and we are now signed-up members. A £30 donation for membership is more than fair when they've already given us around 5 hours of their time.
We are also due to start their "Cygnets" course on monday, which is a 6/7 week course about autism which is very highly regarded by everyone that we've met that has done it. I never thought I'd need a training course to help us raise our children but what I am learning more and more about parenthood is that, unlike IT (my trade) I really can't control the direction life takes and just need to be willing to make continual adjustments to our life and our plans... not easy when you're a programmer by trade who knows that if something suddenly changes its behaviour their is a rational and logical reason that can be resolved...
My wife and I have now attended 2 sessions of the training course I mentioned before and so far so good. The first week is very much an introduction to the course, the trainers and for us (there are 10 of us attending) to introduce ourselves. Second week was more detailed and it really ramps up from next week apparently.
What I didn't realise until we started it is that this is a nationwide programme which is developed by Barnardos. If anyone is interested in learning more then the details are here
What I didn't realise until we started it is that this is a nationwide programme which is developed by Barnardos. If anyone is interested in learning more then the details are here
superlightr said:
We have 2 beautiful twin girls and a 3rd daughter. 1x with autism. Both twins now 15. Had posted before over the years as it has been very hard on the family.
quick summary of what I have learnt.
don't ever smack her. She wont understand. it wont help. it will make things worse. it makes you more angry that "normal " chastisement should work but isn't. Its a horrible things to learn that what you thought was the right thing to do was the opposite. I hate myself for smacking her now. It wont improve "her" behaviour it makes it worse as she does not understand.
She will need love, support, quiet time. More love. More quiet time.
Reassurance
Don't worry if rooms get trashed in anger by her - let her get it out of her system, love her, talk to her, give her her own space.
talk to your partner about your fears and other siblings. read books on autism - talk here on PH. My family was almost torn apart as we did not understand why she was behaving like she was. We didn't have a diagnosis until about 10 or 11
Excess stimulus can make her behaviour worse. Noise, people, lights, smells. Just be conscious that it may be over whelming for her. She will need a quiet place to calm down in.
Physical sports/activities can be very good as it gives an exhaust for pent up feelings, they can control the activity they feel safe doing it. ie walking, climbing etc. Do the activity with them. ps - Im now a good rock climber !! my daughter is brilliant at it.
They will be worried about too many choices you give them. They prefer certainty. Make the choices for them or give them limited choices so not to overwhelm.
Gently, calmly talk with them. love them. understand them.
Be careful about food - our daughter 2 yrs ago almost died because of an eating disorder. She was almost sectioned under the mental health act at 13. You can imagine the absolute terror we as a family faced and how scared our daughter was.
Climbing was her saviour and her reason to get better. She still struggles now but is much better.
Drawing, learning and climbing are her loves.
She loves our dog and the dog loves her without question - they have a special bond. We take our dog with daughter as an assistance dog to help her stay calm if needed not always but sometimes.
She will learn to help herself. She will learn to take herself to a quiet place to reset.
She is very bright and academic and artistic and loving in her own way. She is funny.
She is my beautiful daughter who I now adore.
Many thanks for posting this, and for all other contributors to this thread. It really is very much appreciated.quick summary of what I have learnt.
don't ever smack her. She wont understand. it wont help. it will make things worse. it makes you more angry that "normal " chastisement should work but isn't. Its a horrible things to learn that what you thought was the right thing to do was the opposite. I hate myself for smacking her now. It wont improve "her" behaviour it makes it worse as she does not understand.
She will need love, support, quiet time. More love. More quiet time.
Reassurance
Don't worry if rooms get trashed in anger by her - let her get it out of her system, love her, talk to her, give her her own space.
talk to your partner about your fears and other siblings. read books on autism - talk here on PH. My family was almost torn apart as we did not understand why she was behaving like she was. We didn't have a diagnosis until about 10 or 11
Excess stimulus can make her behaviour worse. Noise, people, lights, smells. Just be conscious that it may be over whelming for her. She will need a quiet place to calm down in.
Physical sports/activities can be very good as it gives an exhaust for pent up feelings, they can control the activity they feel safe doing it. ie walking, climbing etc. Do the activity with them. ps - Im now a good rock climber !! my daughter is brilliant at it.
They will be worried about too many choices you give them. They prefer certainty. Make the choices for them or give them limited choices so not to overwhelm.
Gently, calmly talk with them. love them. understand them.
Be careful about food - our daughter 2 yrs ago almost died because of an eating disorder. She was almost sectioned under the mental health act at 13. You can imagine the absolute terror we as a family faced and how scared our daughter was.
Climbing was her saviour and her reason to get better. She still struggles now but is much better.
Drawing, learning and climbing are her loves.
She loves our dog and the dog loves her without question - they have a special bond. We take our dog with daughter as an assistance dog to help her stay calm if needed not always but sometimes.
She will learn to help herself. She will learn to take herself to a quiet place to reset.
She is very bright and academic and artistic and loving in her own way. She is funny.
She is my beautiful daughter who I now adore.
Edited by superlightr on Thursday 7th November 15:11
MrJuice said:
wiggy001 said:
My wife and I have now attended 2 sessions of the training course I mentioned before and so far so good. The first week is very much an introduction to the course, the trainers and for us (there are 10 of us attending) to introduce ourselves. Second week was more detailed and it really ramps up from next week apparently.
What I didn't realise until we started it is that this is a nationwide programme which is developed by Barnardos. If anyone is interested in learning more then the details are here
Looks good. Which organisation did you book through?What I didn't realise until we started it is that this is a nationwide programme which is developed by Barnardos. If anyone is interested in learning more then the details are here
I'm based in NW greater London. Can't see anyone delivering this in that area..
Just as an update on the Cygnets course, we have now completed 4 sessions with number 5 tonight, so in addition to my previous post:
Session 3: Sensory
Session 4: Communication
Session 5 (tonight): Managing Behaviour
The last 2 sessions in particular have been very beneficial for us so I would still definitely recommend this course.
I just wanted to add to my previous posts regarding the Cygnets course and say that, having completed the course (6 sessions, 3 hours each) we now feel better equipped to understand VIctoria, the causes of her meltdowns and the challenges she faces every day. It will take a while for what we've learned to sink in and become second-nature or routine for us, but it is definitely a massive step in the right direction.
If anyone here has children on the spectrum, especially if recently diagnosed, I cannot recommend this course enough. What I would say is choose the timing of the course carefully. It was coincidence of timing for us, but we started this course 9 months after getting the diagnosis. In 9 mines we have been through so many emotions (shock, sadness, grief, positivity, anger, frustration - you name it, we've been there!). At the time of starting the course we were in the mindset of "acceptance" and knowing we have to work out the best way of dealing with things for the sake of all of us. I strongly believe we wouldn't have got so much out of the course had we been in any other frame of mind.
If anyone here has children on the spectrum, especially if recently diagnosed, I cannot recommend this course enough. What I would say is choose the timing of the course carefully. It was coincidence of timing for us, but we started this course 9 months after getting the diagnosis. In 9 mines we have been through so many emotions (shock, sadness, grief, positivity, anger, frustration - you name it, we've been there!). At the time of starting the course we were in the mindset of "acceptance" and knowing we have to work out the best way of dealing with things for the sake of all of us. I strongly believe we wouldn't have got so much out of the course had we been in any other frame of mind.
I've just realised that it was a year ago today that I started this thread and a big part of the reason for doing so was probably related to the stress of dealing with the Christmas period for a child with autism. I wouldn't say this Christmas was easy, but a year into understanding VIctoria's condition definitely meant we were more prepared this year, however the meltdowns, when they came, were must worst that they were a year ago.
Best thing we did this year was to stay at home with no visitors on boxing day (after a day with all my family on christmas day). We then saw my wife's family the next day followed by another day at home. The two "Christmas days" were fine a Victoria appeared to cope with everything ok but, as anyone living with autism will know, it's when they are back in their "safe place" that the stress, anxiety and anger comes flooding through!
Anyway, for those in a similar boat, I hope the Christmas period wasn't too stressful although I bet that, like us, you're looking forward to the "normal routine" of school tomorrow!
Best thing we did this year was to stay at home with no visitors on boxing day (after a day with all my family on christmas day). We then saw my wife's family the next day followed by another day at home. The two "Christmas days" were fine a Victoria appeared to cope with everything ok but, as anyone living with autism will know, it's when they are back in their "safe place" that the stress, anxiety and anger comes flooding through!
Anyway, for those in a similar boat, I hope the Christmas period wasn't too stressful although I bet that, like us, you're looking forward to the "normal routine" of school tomorrow!
Anyone got any useful tips or thoughts for helping children with autism deal with the current turmoil that is the Coronavirus?
Victoria is obviously picking up bits of info about it all as people are talking in school, but she doesn't understand it and is struggling a little to deal with the fact that I am working from home permanently now. And I'm struggling with the fact she doesn't understand that I need some space to work. She is used to me WFH, but normally this is on thursdays when she isn't home from school until 5.30, so her bounding into my room signals the end of my working day. It's not so easy when it's just after 3pm and I'm on a video conference!
Luckily everyone at work is in the same boat, so random family members joining team meetings is met with humour! But this will only get worse if/when her school closes.
Any advice would be much appreciated.
Victoria is obviously picking up bits of info about it all as people are talking in school, but she doesn't understand it and is struggling a little to deal with the fact that I am working from home permanently now. And I'm struggling with the fact she doesn't understand that I need some space to work. She is used to me WFH, but normally this is on thursdays when she isn't home from school until 5.30, so her bounding into my room signals the end of my working day. It's not so easy when it's just after 3pm and I'm on a video conference!
Luckily everyone at work is in the same boat, so random family members joining team meetings is met with humour! But this will only get worse if/when her school closes.
Any advice would be much appreciated.
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