| FAO Parents Autism? 19:32 - Feb 6 with 5218 views | PBLOCK |
Evening.
I just wondered if any fellow R's have Children with Autism. My wife is becoming more convinced that our little girl (3 years old) may be on the spectrum
She has shown me some information on it and there are parts that I can see where she is coming from (random running / skipping up and down sort of one wall to another) repeating phrases she has heard randomly and maybe a couple of other things. For every trait she does display there 10 on the checklist she doesn't.
I'm not someone to bury their head in the sand id do anything for her but equally I kind of think she's just being a 3 year old and the quirky little things she does she may well grow out of. It seems to be so down to personal opinion of the expert you see that I think trying to check at 3 is a bit young as they all develop in different ways some kids do things quicker than others and vice versa.
I don't want to let my little girl down but equally don't want someone labelling her at 3
Any experience appreciated
COYR's |  | | |  |
| FAO Parents Autism? on 20:56 - Feb 6 with 5142 views | gigiisourgod |
Evening P Block,
I worked for about 5 years with children who had autism in mainstream schools. The scale is such a vast umbrella and parents hear the word autism and some associate it with the more severe end. I am a huge believer in 'early intervention' when it comes to autism. To develop and encourage that child to keep their personalities but within the boundaries so that they can flourish and be happy.
As you say it is very difficult to pigeonhole exactly what are the attributes that makes somebody autistic. I really hate the way many in our society view autism as an 'illness or a 'deficiency'. From the experiences I have had it really isn't it is just the brain being wired differently. They see things differently to how a typical person sees things. Both the autistic children I worked with the parents fought the system to try and get the child 'unlabelled' as both children were incredibly high functioning and the parents did not like the connotations associated around autism. I found this a shame as instead of encouraging the child to showcase their true personality they were more concerned in making sure they behaved in a manner which would be deemed 'typical'.
Not sure how relevant this all is to you P BLOCK and completely understand parents concerns around their child being labelled autistic and the challenges that may brig the child throughout their life. However if nurtured and developed in the right way being autistic really should not be seen as a negative and can be a positive and wonderful part of someone's personality.
P BLOCK having been on numerous courses I am more than happy to share some of my material on indicators and strategies, pretty similar to what you mentioned in your original post and is very personal opinion orientated.
I understand it is an incredibly broad spectrum and not everyone's experiences and opinions on this subject will be similar to mine. | | | |
| FAO Parents Autism? on 20:57 - Feb 6 with 5139 views | PeterHucker |
No experience of this as a parent but lots of experience professionally.
Pretty rare for any diagnosis of autism to be given at such a young age.
Is her speech is more or less where you would expect it to be for her age? |  | | |
| FAO Parents Autism? on 22:34 - Feb 6 with 5008 views | Brightonhoop |
Follow your instinct. Parents are rarely wrong. The reluctance to label is natural but everyday evidence impossible to convey often turns out to be accurate.
My gorgeous girl wasn't austistic but had processing rpoblems, co-ordination problems et al, technonogy caught up and finally identified one chromosone had not develoed. 6 years too late. Finally threatened the LA with tribunal to get her the eductaion required and won with incontrovertible evidence from Shela Mohammed at Guys. Will never forgive forgive Brighton LEA so forget labelling, it puts you on a backfoot to be taken advantage of. Kings Fund are good too.
Loftboy knows his stuff in real world too, great bloke. Our politics are like north and south pole, but anyone wanting a go at LB needs to come through me first and will get nowhere. Been there as a parent not as a professional, expect to come up against 'professionals' protecting budgets before children and take the gloves off when necessary. Keep us posted my friend it is a tough road, but it shows you the way too so stay strong. And best wishes for your daughter. [Post edited 6 Feb 2017 22:43]
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| FAO Parents Autism? on 06:52 - Feb 7 with 4893 views | BrisbaneR |
Hi PBLOCK,
My wife is the family expert in terms of professional dealings with children on the spectrum as she runs an organisation running events specifically for special needs families (autism/SPD focussed) , and my sister the family expert as her son lives with autism.
I showed your post to both independently, and both immediately suggested investigation and or testing. If your daughter is autistic then early intervention is key as suggested by some other posters, and if she isn't then you're mind will be put at ease.
There is already some great feedback here around how everybody's brain is wired slightly differently to everyone else's anyway, and I found it interesting to hear families speaking about their various children as either living with autism or being 'neuro-typical'....the phrase used when people don't want to say 'normal' because of the unsaid connotations.
Just a couple of early indicators that my wife picked up when we visited my sister in Ireland and we met my nephew (then two years old); he walked on tiptoe everywhere as his Sensory Processing Disorder meant to walk on the flats of his feet was painful, and he'd stopped speaking. He's now just turned seven and, out of the blue a couple of months ago, told his teacher that he had an apple for his lunch when asked, and has been speaking more and more all the time.
So...well worth getting checks done so that at least you know where you stand. If you get news that you don't want then you can be assured that there is far more awareness and help available than you might think. At the end of the day you clearly love your little girl and no label will or circumstance will change that.
Good luck to you and your family | | | |
| FAO Parents Autism? on 12:54 - Feb 7 with 4760 views | Dorse |
This thread is why I love this site.
I've worked with children on the spectrum but with vastly differing needs. There is help available in schools and if there is an SEN, the school and regional SENCO will be able to put plans into place. Autism is a terrifying word - we all picture the worst - but the scale is massive and having structures in place will only help.
Sorry I can't add any more to this PBLOCK but you've already had top-notch advice from the brothers. |  |
| 'What do we want? We don't know! When do we want it? Now!' |
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| FAO Parents Autism? on 13:49 - Feb 7 with 4727 views | WoodlaneR |
Hi PBLOCK,
Im going through the same thought process as you. My 2 and half year old always seemed different to all of the other children from his "group" from a very early age and it became more apparent as he got older. We were putting it down to late development but then he started doing some of the so called "typical" behaviors. Although he is very young and a lot of it could be a developmental delay I would agree with what others have said and go with your instincts.
It can take a long time to get a referral and the way I see it, I would prefer to know if there is an issue sooner rather than later. We are currently going through the assessment process and will have a final meet at the end of the month with the specialists.
Obviously I am hoping that they will tell me they do not believe he is on the spectrum (without wanting to sound disrespectful to anyone) but if they do and it ends up being just a developmental delay then I guess it would become apparent as he grows up.
Without hijacking the thread Id like to say thanks as well to everyone who responded. Its a difficult time for us dealing with a subject that I currently know very little about so to read comments and opinions from like minded people is very helpful for me. | | | |
| FAO Parents Autism? on 14:13 - Feb 7 with 4707 views | danehoop |
PBlock, as a father of 2 autistic boys I'd echo what others have said on here.
The key in Autistic Spectrum Disorder (ASD) is spectrum. The indicators used can be very different and exist in all or just in part with any child affected (case in point my eldest is high functioning ASD my youngest is moderate to severe) so dont expect your daughter to demonstrate every indicator.
It is also far far more prevalent in boys than girls statiscally (but perhaps part of this is just detection isnt clear) and it does affect about 1% of the population. Key thing as others have said is early detection and intervention. Go speak to your GP with your daughter and share your concerns - but you know your daughter better than anyone else, so it is your judgement that is the most important. If you are not sure or feel you are not being taken seriously, insist on a referreal to a specialist. It can be a fight, but it really important to push hard as you may not get traction or taken seriously. Local authorities can be really variable on this as well, their budgets are under pressure and they can be reluctant to support (I suspect in part because of the potential committent to long term support which is a cost to their budgets which are under pressure).
If your daughter attends a nursery you might also look to see if they have observed anything as well, obessive play with certain toys (my sons both played with wheels on toy cars - missing the car, but loving the act of turning the wheel).
Another huge source of help, support and advice is the National Autistic Society - visit their website as there are loads of informations sources and advice and their helpline is brilliant.
Big points to remember:
Whatever happens is that you are your daughters number one advocate and supporter and know her better than anyone else.
If she needs support then you have to keep fighting on her behalf. Early intervention can make a huge difference - my eldest son was diagnosed at 2 years 8 months in Denmark and had real delay in terms of language and engagement. Now aged 12 he aced his SATs last year, attends secondary school and his strongest subject is English where he is well above his expected achievement.
Whatever happens and whatever diagnosis or otherwise that you get, your daughter is still the most awesome person that you will ever know and she will continue to bring joy and love irrespective.
She is not defined by any diagnosis, she is and will always be your child and will always amaze you by what she will achieve. |  |
| Never knowingly understood |
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| FAO Parents Autism? on 14:45 - Feb 7 with 4689 views | terryb |
| FAO Parents Autism? on 12:54 - Feb 7 by Dorse |
This thread is why I love this site.
I've worked with children on the spectrum but with vastly differing needs. There is help available in schools and if there is an SEN, the school and regional SENCO will be able to put plans into place. Autism is a terrifying word - we all picture the worst - but the scale is massive and having structures in place will only help.
Sorry I can't add any more to this PBLOCK but you've already had top-notch advice from the brothers. |
"This thread is why I love this site".
Indeed Dorse.
Forget all our petty squabbling about Queens Park Rangers etc. Here we have a man (being a board member or Rangers fan is irrelevant) that requires help/guidance & as expected, this is being offered.
I can't offer you anything PBLOCK, but I wanted to wish you well & thank you for trusting us to share your concern. Also a thank you to all of you that have responded.
Edit.
I have just re-read the thread that MrSheen posted. it's still as good to read as it was originally! [Post edited 7 Feb 2017 15:02]
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| FAO Parents Autism? on 15:23 - Feb 7 with 4658 views | richranger |
Hi P Block
My daughter, Lilia, who is now 9 years old, was diagnosed with Autism when she was around 4 years old. We have since been on a great journey with her, and my wife is now helping to run a charity called 'Treating Autism'.
IMO getting a diagnosis is the best thing you can do. If she is indeed on the spectrum, the earliest you start treatments and therapies, the better.
You can read about my daughter, Lilia, here http://treatingautism.org.uk/lilias-journey/
You should also check out the full website, as there is loads of into on autism and the support that parents can get.
Best of luck with your daughter! | | | |
| FAO Parents Autism? on 16:55 - Feb 7 with 4610 views | tommytanker |
I am afraid I have no advice or experience in this but I wish you, your wife and most importantly your daughter the very best. [Post edited 7 Feb 2017 16:55]
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| FAO Parents Autism? on 19:15 - Feb 7 with 4541 views | W12SG2 |
Got a 13 yr old boy with autism. Early diagnosis (aged 3) made a huge difference as did having a statement for school - helped us in some battles with his primary school. Statements are now called Education, health & care plans and apply until the person is 25. Well worth getting in place as it puts a legal obligation on the school to meet their needs (the education part is the most important as the health section has no legal force).
Anecdotally, the idea that autism is more common in boys may be wrong. A couple of professionals have said they think it's 50/50 but that girls are better at hiding the symptons. As others have said, it's a very wide spectrum however.
To end on a positive note, I've never wished my son was any different. It's not always easy for him or us but with help and understanding he amazes us. His older brother (16) is also a godsend, helps him out loads and takes him to Loftus Road when he can. I can't praise him enough.
Good luck to you and your family | | | |
| FAO Parents Autism? on 19:51 - Feb 7 with 4511 views | PBLOCK |
Thanks so much for all your comments it really is hugely appreciated. So a bit of an update. We had a chat with her nursery school today and voiced our concerns and to be fair they were great.
Her key worker and the manager were who we talked to. Essentially they said having dealt with lots of children with ASD previously and also currently in their opinion they don't think she is. When we talked through a couple of the things that were of possible concern they assured us that although it is possibly on the things to look out for that in itself doesn't necessarily mean that is what it is. According to them she's a pretty happy kid at school who is on target with all developmental points.
They have agreed in addition to normal updates / reports they will set aside some time every two - three weeks to update my wife as to anything they notice, and should anything change their view and lead us down the path of referrals they will help anyway they can.
Once again thanks so much for the advice was a bit choked when I read this morning as someone said 'Makes you proud to be Rangers | | | |
| FAO Parents Autism? on 20:24 - Feb 7 with 4482 views | headhoops |
Hi PBlock,
some great advice for you already - do you live in Woking per chance. I'm a trustee of a charity that offers all manner of help to anyone with a learning disability - happy to see what or how we could help you. |  |
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| FAO Parents Autism? on 21:56 - Feb 7 with 4435 views | danehoop |
| FAO Parents Autism? on 19:51 - Feb 7 by PBLOCK |
Thanks so much for all your comments it really is hugely appreciated. So a bit of an update. We had a chat with her nursery school today and voiced our concerns and to be fair they were great.
Her key worker and the manager were who we talked to. Essentially they said having dealt with lots of children with ASD previously and also currently in their opinion they don't think she is. When we talked through a couple of the things that were of possible concern they assured us that although it is possibly on the things to look out for that in itself doesn't necessarily mean that is what it is. According to them she's a pretty happy kid at school who is on target with all developmental points.
They have agreed in addition to normal updates / reports they will set aside some time every two - three weeks to update my wife as to anything they notice, and should anything change their view and lead us down the path of referrals they will help anyway they can.
Once again thanks so much for the advice was a bit choked when I read this morning as someone said 'Makes you proud to be Rangers |
PBlock,
don't hesitate to post up any more questions or feel free to PM me. | |
| Never knowingly understood |
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| FAO Parents Autism? on 22:55 - Feb 7 with 4397 views | A40Bosh |
Well done guys, yet again you have all stepped up to the plate when needed and having a 15 yr old nephew who is as far across this spectrum as it is pretty possible to go I can say to PBlock that regardless of the outcome, there is some excellent and well informed advice on here and more available I am sure should it be needed.
You are doing the sensible thing and tackling your concerns head on now and not burying your head in the sand. If it transpires that it is not autism, all well and good, if you do have go on that journey then as the others said the early diagnosis and intervention is key.
Best of luck PBlock and if you need to please reach out again because it seems there is a great deal of support waiting for you on here mate. |  |
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| FAO Parents Autism? on 01:49 - Feb 8 with 4357 views | CanadaRanger |
One of my sons is an Occupational Therapist who works with children and young adults who have autism. People with that level of training can make a huge difference in how a child develops and copes - and in how parents can best help and support the child. Reach out to your local specialist. Occupational Therapists are a good starting point. |  | | |
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