thanks. It does seem that professional diagnosis is essential. We have started the process, although they say it will take nearly 2 years. That seems crazy.
your experiences of autism?
- Thread starter downsouth
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Glover_elbow
Well-known member
My daughter wont eat meat, from an early age she wouldnt tolerate it because of the texture. funnily enough though, she loves sunday dinner swamped in gravy, but no meat. If they wont eat something then no amount of effort and bribery will make them change there mind so its best to go with the flow, my daughter loves broccoli and peas so she has those with most meals. As for parenting, i agree normal parenting doesnt work because they dont get consequences, especially in a distressed state, forget naughty steps and punishments, best to pre-empt or distract from situations before their bucket overflows with emotions.
They have a lot more flexibility. My daughter does some sort of Maths and English. But if you can get an EHCP you have full time education funded until 25 which is priceless. My daughter does animal management and other stuff that is specific to her. Also lots of life lessons which is useful for building up the skills she doesn't naturally have or hasn't learned through social interaction.
The focus is on finding the way of learning that works for each child. There are classes of 5 with 4 or 5 adults so almost 1-2-1. Finding the right establishment is key. The environment has to to be right.
The council will have teams of people to help but you need the referral and you need to push like mad to get your child to the top of the lists. You are competing against 100s of other families. Be prepared to battle and fight your corner. If you have a good MP, a good SENCO and a referral it helps. Knock of every door possible and don't take no for an answer.
My 9 year old son is on the spectrum (would be classed as Aspergers when it was a thing) ... he has issue with his social skills .. doesn't take an interest and doesn't want to / cant speak about anything other than his special interests .. We can get him to engage about other things briefly but he soon brings the conversation back to his latest "thing" ..
York is the Tees, Esk and Wear group. As you can imagine the demand is huge. CAHMS can help push as they know all the people who need to be involved. Keep pestering. And don't let them tell you there is a process. In as nice a way as possible be a pain the bum.
And if you don't get on with someone get them changed. Your daughter has to like the people who are helping her.
Ingleby_Flash
Well-known member
Can’t add to a lot of the great advice above, but will say a close relative is autistic, dyslexic and dyspraxic. It created a lot of challenges growing up, my favourite challenge was she needed to know on a Sunday night who was picking her up from school each day that week, God help us if that changed!! fortunately her parents are amazing people. She is and always has been a beautiful and caring person and now in her thirties is married with children and living a nice life. Different sometimes yes, but always amazing, caring and a wonderful person.
similar mine. Obsessed with certain foods. Also, refuses to sleep in her own bed. Tried everything, so just let it be.
UTB70
Well-known member
My fiancée was diagnosed last year with aspergers after years of fignting for diagnosis and feeling different or treated like an alien. For me personally its a clash between a neurotypical brain and a neurodiverse one. Been my toughest relationship ever as have had to change my 'natura' thought patterns and behaviour to suit her needs. Made me more understanding, patient and loving as a result. My missus also has adhd and c-ptsd +Rsd. Initially every move i made or said triggered her, mainly change of plans, noises, lights, smells, touch all affect her. I also deal with her past trauma and suicidal tendencies, and many meltdowns and shutdowns. Thinkbmy situation is more of extreme end though but love her and wouldnt change her for the world as she so full of love. She cant help way she was made.
Thanks. We are just coming to terms with the idea that she is most likely autistic, so just becoming aware of what the future might be. The Senco at school is great but we need things in place for when she leaves primary school in two years. She's a great kid, full of character but very difficult to manage.
This is good to know.
really admire your patience and attitude to this condition. Sometimes I'm at a loss how to deal with my 9 year old because you can't rationalize with her. Arguing and shouting is exhausting for both sides, so have to think of other strategies. Tough though.
With anything it has to be on her terms. If we make a big deal it makes this worse. We never apologise for her when we are out as it's who she is.
Most people are very much live and let live. You will realise that the vast majority of people understand and empathise with you.
A good example is our daughter only wears PJ's. Not a single person bats an eye at her. We live in a much more tolerant world that you would think from watching the news or reading some of the guff in the papers.
So do what works for your family and focus on keeping you all safe and happy.
Glover_elbow
Well-known member
great uplifting post
Wistow_Red
Active member
My wife owns and runs a business which provides autism assessments, support and training packages for school and parents. She would be more than willing to discuss with you any questions, concerns etc. that you have and talk to you about the assessment process. No hard sell or anything like that, she just wants to provide support where she can. If you'd like to speak to her DM me and I'll provide you her contact details. And no worries if not.
Redwurzel
Well-known member
I read the Chris Packham poster and thought a lot of that, is me.
When I watch and listen to CP on TV, I feel a kindred spirit and really enjoy his intensity and knowledge of nature.
I worked a lot with young people with autism and aspergers in small groups with mixed types in educational seting. You need to get to know the person and find out what is important to them and work around that, which often means putting your their needs above yours. They say people with autism have little or no empathy, I found this was not exactly true, they would appreciate their needs being met with some fantastic results on their education development and to some extent social development. I had to be flexible and not be bossy. Be over inclusive if anything. I was lucky that I had small groups, I noticed once the groups became bigger it became more difficult (say over 10) and I had 16-25 years olds in the groups.
I can't help Down South a lot, but I found that some behaviour that are personality traits can easily be diagnosed as autism, especially with older children.
Look at Adolf Hitler - low empathy of others, not good in social relationships, prone to emotional outbursts, would not eat meat (very odd in Germany/Austria at that time), intense at times, had special interests - was he on the autistic spectrum? my feeling he was not overall, but could have been diagnosed as such in recent times.
When I watch and listen to CP on TV, I feel a kindred spirit and really enjoy his intensity and knowledge of nature.
I worked a lot with young people with autism and aspergers in small groups with mixed types in educational seting. You need to get to know the person and find out what is important to them and work around that, which often means putting your their needs above yours. They say people with autism have little or no empathy, I found this was not exactly true, they would appreciate their needs being met with some fantastic results on their education development and to some extent social development. I had to be flexible and not be bossy. Be over inclusive if anything. I was lucky that I had small groups, I noticed once the groups became bigger it became more difficult (say over 10) and I had 16-25 years olds in the groups.
I can't help Down South a lot, but I found that some behaviour that are personality traits can easily be diagnosed as autism, especially with older children.
Look at Adolf Hitler - low empathy of others, not good in social relationships, prone to emotional outbursts, would not eat meat (very odd in Germany/Austria at that time), intense at times, had special interests - was he on the autistic spectrum? my feeling he was not overall, but could have been diagnosed as such in recent times.
Thanks. I have thought about the problem of diagnosis. Is it just a personality trait or a condition? Possibly we are all somewhere on the spectrum, but its when its perceived as not normal that we give it a label, an 'ism'. May be because we experience it as challenging that we think it un normal or because the norms of behaviour are so defined. I don't know.
I would not be diagnosed as autistic myself but I recognize some mild autistic traits in myself, strange enough.
JonnyRiverdance
Member
My daughter is 16 now and diagnosed Autistic ( if she reads this she will kill me,absolutely hates the 'A' label that always seems to immediately follow her forename) at 5 year old after 3 years of numerous tests and assessments. Me and the wife had big difficulties during these 3 years of assessments, she KNEW our daughter had Autism yet I was completely in denial, to be honest I hated the thought of not having a 'perfect' daughter,I feel so bad even writing that now. On getting the diagnosis I changed immediately and became determined to fight every corner for her to have the best life possible. Believe me you will have to fight for her, schools and authorities have tried to write her off so many times. I've lost count of the arguments with them,even went to my M.P twice and to their credit (2 different M.Ps) both situations were immediately resolved. She is now studying Art and Design at Mbro college becoming more and more independent and I couldn't be prouder of her. Don't expect any massive changes, small steps and improvements are the norm.
Buckle up and enjoy the ride!
Also surprised how many posters have female relatives with the diagnosis, 10 years ago it was less than 10%, my daughter was the only girl in her class up until secondary
Buckle up and enjoy the ride!
Also surprised how many posters have female relatives with the diagnosis, 10 years ago it was less than 10%, my daughter was the only girl in her class up until secondary
My son is autistic and was diagnosed in Y6. He was previously assessed in Y1 and was classed as borderline but no. they did say at the time he might need to be re-assessed and he had some behavioural issues which meant we referred him again. Process started early Y5 and finished end of Y6 so about 18 months. This was during Covid as well.
We were really concerned when he went to secondary this year as we weren't sure how he would adapt to a new school, new people, multiple classrooms etc. He does seem to be thriving now though which is a massive relief, but we are still on our guard. Friendships have always been a challenge, he will often make one particularly good friend and then it can get a bit intense.
He's very bright and I think in these cases they learn how to adapt and 'mask' in situations where otherwise they would find it really difficult. If he finds something he likes he will find out everyhing there is to know about it. He can reel off the first 50 elements in the periodic table and he's brilliant at worldle. But then he really struggles to tie his shoelaces and as above, if his routine is altered then he can find that quite difficult. We often reiterate any changes well in advance ( to the point where he said to me recently 'yes, I know, you've told me a million times'
)
He can struggle with expressing his emotions and can cry easily which could be perceived as immature if you didn't know him.
I would say try and bring out their strengths (as on the poster above), autism obviously brings challenges but it also brings benefits as well, it's just harnessing it. Every autistic child is different though and has different experiences.
The genetics side of it fascinates me as well, I can certainly see myself as a kid in him and wouldn't be at all surprised if I was on the spectrum somewhere. His sister wouldn't be far off either I don't think, though as said above girls find it harder to be diagnosed.
We were really concerned when he went to secondary this year as we weren't sure how he would adapt to a new school, new people, multiple classrooms etc. He does seem to be thriving now though which is a massive relief, but we are still on our guard. Friendships have always been a challenge, he will often make one particularly good friend and then it can get a bit intense.
He's very bright and I think in these cases they learn how to adapt and 'mask' in situations where otherwise they would find it really difficult. If he finds something he likes he will find out everyhing there is to know about it. He can reel off the first 50 elements in the periodic table and he's brilliant at worldle. But then he really struggles to tie his shoelaces and as above, if his routine is altered then he can find that quite difficult. We often reiterate any changes well in advance ( to the point where he said to me recently 'yes, I know, you've told me a million times'
)He can struggle with expressing his emotions and can cry easily which could be perceived as immature if you didn't know him.
I would say try and bring out their strengths (as on the poster above), autism obviously brings challenges but it also brings benefits as well, it's just harnessing it. Every autistic child is different though and has different experiences.
The genetics side of it fascinates me as well, I can certainly see myself as a kid in him and wouldn't be at all surprised if I was on the spectrum somewhere. His sister wouldn't be far off either I don't think, though as said above girls find it harder to be diagnosed.
Boro in Devon
Well-known member
I have a nephew in his 30's who is autistic, I have seen the journey that his parents have had trying to get him to participate in the world. The parents had him when they were older and now are nor sure how they will cope moving forwards. They are both unwell and unable to cope when he kicks off, No other family members live near to be able to support.
I have also worked a lot with people who are on the spectrum. I have been amazed at the level of detail they apply to their work. However they suffer by not being able to apply the knowledge that they find. They have held down big jobs in the data sciences and stats worlds.
I have also worked a lot with people who are on the spectrum. I have been amazed at the level of detail they apply to their work. However they suffer by not being able to apply the knowledge that they find. They have held down big jobs in the data sciences and stats worlds.