help please undiagnosed son and mainstream

You will like this then (irony):

http://community.autism.org.uk/comment/21703#comment-21703

Not only do they fail to help the children they are supposed to support, but they turn it entirely round the other way and accuse parents who are fighting for what their children need!

Terrible story of what happened to a mother of an autistic child:

http://www.telegraph.co.uk/women/womens-life/10550801/The-lunatics-take-over-the-asylum-in-caring-Britain.html

...and this one, about Ehlers Danlos (hypermobility which is associated with autism)

http://janloxley.blogspot.co.uk/2013/10/ehlers-danlos-syndrome-child-protection_25.html

Please everyone support the Change.org petition (http://www.change.org/en-GB/petitions/mark-lever-nas-ceo-carol-homden-nas-chair-of-trustees-act-on-allegations-of-fabricated-or-induced-illness-being-used-as-a-bullying-tactic-by-professionals-on-parents-of-children-with-autism).  This could happen to anyone!

PS: you have to laugh at our usernames don't you, kind of says it all!

Grrrrrrrr!!! makes my blood boil.  So sorry to hear that you are getting nowhere with a care agency who purport to support the interests of children, surely this should come under safegarding, as it is detrimental to the childs health and well being.  It is abuse it is about using the child to gain acolades in an adult world of politics, and money.  But because they are a local authority, and are backed by Government legislation, they can unshackle the chains and walk away and blame the parents.

www.teescpp.org.uk/principles-of-safeguarding

The problem with most professionals is that they have an unjustifiably high regard for themselves (I am a professional, so I've seen it first hand).  They are unable to reflect on the fact that safegarding works both ways, ie, that it is a parental responsibility to protect their children against being exploited, bullied and otherwise coerced by a person or body of people that think they are acting in a childs best interest, but in reality are acting on their own behalf (this also works with older adults, of which I have much more experience with) I despise these people, they don't bend over backwards to do what is right for an individual, then bend over backwards to protect their own behinds!!

I was looking on the NAS last night and came accross a number of specialist Autistic schools around the country.  I don't know where you live, or whether you have seen this information.  My son is probably a bit to far into the education system now to benifit, but I would certainly consider it for my daughter. I have a group of aspie Mum's on Facebook, some I have met through my son's friendship at junior school, and some are just friends of them.  One lady has just begun home schooling for her son.  My hat off to her, that is a mamoth undertaking at year 9, but he is repaying her by being happy and hoovering in the lunch break! so there is some reward in it.  Another friend has finally had her son statemented, after 5-6 years of battling.  It should not be like this, there is too much politics in health, education and social care.

I'm consious that we have taken over the orriginal conversation/post, which is probably a pretty Aspie thing to do :)  Sorry mum2two

I agree, my 12yo school is doing the same with pushing for early GCSE's.  She is already overhwhelmed (and currently off with school-related anxiety) by homework and the school refuse to adjust it, they truly do only care about how they appear in the league tables.  She too is an early July baby so is amongst the very youngest in the year.  The pressure schools put on children is enormous.  My daughter is currently being assessed for a statement and the SENCo told me that even with her diagnosis there is no guarantee of her getting the statement (which I already knew!) and proudly announced that they have two ASC children without a statement.  Those poor children, coping with a school as ignorant as my daughter's school have proven to be, lacking any real support.

Thank you. I will let my Gp contact the Lorna Wing Centre, i'm sure they will be able to direct her in the right direction.

My Son has has a meltdown tonight about homework.  He rarely has meltdown's at home, but after being off work myself, for six months due to stress, I can see the signs in him. He admitted that school were expecting too much from him, and is finding it difficult to cope with the expectations, and is really angry about homework.  Because he is bright, they have put him in the extension band, which means (I think) he will do some of his GCSE's early....Why??? His birthday is in August, (He was born a month premature) so he is already almost a year behind, and they want him to take major exams a year early, that is almost two years early for somebody with a delayed developmental condition.  Intellectually he may be able ro achive his grades, but I doubt he is ready developmentally for this challenge.  This is all very new to me, and the schooling system is something one has to traverse to get to the real nitty gritty of life.  That said, I know how important those bits of paper can be, whatever age in life you chose to wield them. I don't understand why it is so important for the school to push children to achieve early, I cannot see any benifit for the child.  My daughter also has been sent home with a thick book of mathmatics to complete at home and the same with English. This is just to boost the figures for the school, in sending pupils to secondary school with good Sats results - were does the child figure in this???

Hi - sorry i havent read through all of your replies, but in case no one else has mentioned it - YOU can request the statement assesments fromyoru local LEA and iin fact its best if a parent does. Trust your instincts and tell them that if they will not provide what you consider to be a safe environment then you'll have to remove him from school - they should replace the glass doors, and or he needs someone with him to guide him through the things that he clearly finds serious obsticles - that others children appear not to. otherwise they would have already made the changes, and therefore their arguement of "all children can act like this" is nonsense. 

dont ever be put off by a teachers responce to you - TRUST your instincts as a parent, we have them for a reason :-) 

I'm not sure if the Lorna Wing Centre diagnoses adults, they might only do children, you'd need to check.  Your GP may well want to choose the cheapest option.  In my opinion, adults with ASC are complex cases by default because they have learned coping mechanisms which makes them more complex to diagnose, especially if they don't have access to childhood info.

It's good to be proud about being an Aspie, bearing in mind most of us have had a lifetime of negative comments about how difficult we are beforehand.

Thank you for your quick response and detailed info. I did think about the Lorna Wing as that is where Dr Gould is based, but wasn't sure wether my case was complex??  I will pass this info onto my GP. I think they have to deal with so many complex 'physical needs' that these 'brain issues, behavioural issues' are classed as a secondary concern, ie they are not life threatening... only they are, in terms of quality of life and the risk of harm, suicide etc. It is such a relief that people have campainged, and researched and worked hard to bring this into the public domain, and I am so grateful for that. I can now hold my head up high and acknowledge "I am odd, and I like being this way, but I'm not as odd as you, because I actually give a s*** about other people and you only give a s*** about yourself, how odd is that???"

It would be your nearest specialist centre (you or your GP could contact the Lorna Wing Centre for advice on where http://www.autism.org.uk/our-services/diagnosing-complex-needs/about-the-nas-lorna-wing-centre-for-autism/contact-the-nas-lorna-wing-centre-for-autism.aspx).  Your GP can also contact your local authority: http://livingautism.co.uk/new-directory-diagnosis (don't know why he seems a bit helpless in this regard as they should know!)

The Maudsley in London has a specialist autism assessment which diagnoses adults. http://www.national.slam.nhs.uk/services/adult-services/nau/ (online referrals here: https://www.national.slam.nhs.uk/referrals/)

On the NAS website there is a directory too (http://www.autism.org.uk/directory/browse/cid=52~aid=1.aspx), but always ensure you ask questions about their experience of assessing and diagnosing females.

I was diagnosed privately, my youngest child was diagnosed by the local child development centre and my eldest, was originally assessed by CAMHS (who were rubbish and although she met all criteria didn't diagnose her) and subsequently assessed by an out-of-area autism centre for children/adolescents after I requested a second opinion.

Your daughter does sound potentially Aspie.

Thanks for your reply.  I am interested in getting myself diagnosed, as a female adult, which I understand from research (Dr Judith Gould) requires quite specialist diagnosis.  I im also mindful that as my daughter matures, she is showing some traits, extreem shyness in school, very quite - yet a complete chatterbox at home, with some profound observations on life! She is obsessed with Dr Who at the moment, and although she longs for friends, she is invariably dissapointed with the way they behave; makes my heart bleed. She is such a lovely, kind and empathetic girl, and very pretty, to boot. Whoever said that Aspies lack empathy really didn't understand us at all.  We back away, because we have been hurt too many times, we feel things much more intensley than NT's.  Anyway, I digress, I am interested to know how you got your daughter diagnosed, bearing in mind the specialist diagnosis.  My GP is willing to make a referral, but doesn't know who to refer to, she trusts me enough to do the resarch (I love my GP, she is fab) please have you any advice? (I also have dyslexia - but two degrees, so I'm not stupid, well maybe I am, but than the education system must be more stupid for awarding me these qualifications?!)

Frantic I agree with what you say.  My 12yo daughter has just been diagnosed and from what you say about your son's school it sounds like the same as my daughter's school experience.  I also disagree completely with integration.

Just as a PS. My son was diagnosed with hypermobility and sensory intergration disorder at 6 (my GP was willing, at my request to refer to a peadriatric OT) but they are not able to diagnose AS.  It was only when he hit secondary school, and the bullying began and he refused to go to school, at all, that his true self emerged.  I do not believe that ASD only shows itself in young children, It does in some, but in others, especially girls (there is evidence out there to support my claim) the move to secondary school/purberty etc can really magnify the difficulties.  Having my son diagnosed, has made such a difference to him and us as a family.  I have to say that his senior school seems to have dealt with it much better than the infants or Junior school did.  Not a reflection on you Mummy2two, more a reflection on them.  Good luck with your journey.

I don't think you are over reacting, It's hard sometimes, especially as you son is only 4. What is/is not a normal behaviour pattern for a child that age?  Unfortunately, teachers and degree psychology student's, which were banned from going into teaching in the 90's, are taught 'normal' pysychology.  Parent's learn about their children, what upsets them, what stresses them, what makes them feel happy and relaxed. But as parent's we no longer have any rights, any emotional intelligence, if we don't fit into the square hole, than our children don't stand a chance.  As a mother of a child, diagnosed recently at 14 yrs of age, and highly suspecting that I have managed AS for the past 51 years, push all you can to get your son statemented. These children need to be with their own kind, in a caring, non bulling environment.  They DO NOT have learning disabilities, their disability is being held back from learning, by disruptive kids, who have no interest in learning.  There should be special schools for these children, I would wager, that most Kids that are home schooled are on the spectrum, and do really well outside of the cacophoney of unnessesary sensory overload in mainstreem schools.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3365276/ (article on hypermobility)

"Differences in the structural integrity of temporal and parietal cortices may underlie wider behavioural phenotypical expression of hypermobility: abnormalities in superior temporal cortex are also seen in autism."

thank you , i was going to phone them monday and im thinking of phoning the ed pshy to disscuss  what she has asked the school to do and there answers to not doing them .

the school senco and teacher addmitted to us in a previous meeting that they didn't know much about autism so the teachers comment about him not getting a diagnosis came as a shock especially as minutes earlier i had to explain what echolalia was as they had been sitting my son in nursery for two minutes at a time for repeating or mimicking other children .

it's so frustrating . the asessments should be compleated by march so will hopefully know something by easter . i think with so many traits it's possable he will be diagnosed . it's a bit hard to ignore everything in the reports from the proffessionals even if the school says there is nothing wrong .

Hypermobility is well-known to be connected to autism.

A parent can request a statement direct from the LA, you do not need the school's support, although it helps of course if they do support it.  A statement does not depend on a diagnosis, it is based on the child's needs.

Contact www.ipsea.org.uk and your local Parent Partnership organisation for advice.

If your son is being assessed for ASC, the school have no business giving their opinion because what support he gets is based on what happens with the diagnosis.  Even if he doesn't get a diagnosis they should still recommend what he needs based on their findings.