Ms

Hi , i feel like im bashing my head against a brick wall , my son was reffered to camhs as he displayed autistic traits , this was said by a teacher in primary .kai was around 7 years of age . Was seen by phsycologists and visits to moniter him in school .so on and so on , he is 13 years of age in april , camhs no longer deal with him and have recently asked for a re refferral and been knocked back , im having so many problems with him at high school , even though he has an SEN tag on him , the school will not open another caf on him , but recognise he has complex needs . But they say they cant help because he hasnt had a diagnosis , if there is anyone out there that can help i would be most grateful for advice of what to do next , cos im at a loss , he has been for adhd/asd and although they say he has a lot of the traits , ive had no diagnosis as such. Kind regards , angie

20 Replies

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  • The only person who can give a diagnoses is a consultant, it's frustrating that schools can't give an official diagnoses when they are the ones working with children and have lots of experience of children with different needs. Have you spoken to your Gp and asked to be referred to a paediatric consultant? The school should be working with you to get a diagnoses as it will not only help you and your son but them also. If you have been down this road already with no luck, speak to national autistic society they are brilliant in guiding you.

    You're halfway there as he already has help at school. The school nurse may be able to help also.

    Hope you get the answers your looking for x

  • He has been seen by a peadiatric doctor , for all of ten minutes , total time by psycologists five hours , and on this basis havent come up with anything other than he hss complex needs , he has started now with seizures of which he has been refferred to epilepsy clinic , hes had two MRI, and one sensory test for photosensitive , flicker test , if which were normal .i truly believe he hss asbergers , but im just having trouble getting a proper diagnosis

    Kind regards

    Angie

  • Complex needs covers a multitude of things, ask them to list and explain what his complex needs are, you never know amongst this you could discover autism.

    Where the school is concerned having complex needs is enoughfor them to deal with your sons issues. Is there something specific you think is not being addressed?

    Education, social & emotional, finance, speech?

    A lot of conditions overlap each other and he could have more than one difficulty which will be why they say complex needs.

    My daughter is high functioning autistic (Asperger's) while my granddaughter is classic autistic with global development delay.

  • They dont seem to be addressing his emotional and social needs , he is highly intelligent and finds school boring , however if he doesnt want to do something , he wont do it , he has been verbally agressive with some of his teachers , he doesnt seem to understand the words stop , dont , no , cant need i go on , he has attacked me several times and his dad .he will try to engage you in an argument about anything and will be verbally aggressive .he seems to have a blind rage thing aswell but not often , he has had a hand waffing thing , but this has spread to waffing objects , he went through a stage of head tics this changed as time went on , i have video footage of this and the waffing , he doesnt have friends and prefers to do his own thing , he usually lines up cars or whatever he is playing with , he can complete a game on xbox in a day , when hes at school he cant focus , keep still , and tends to be removed from a lesson for being disruptive . He doesnt sleep well , once he starts something he has to finish it otherwise he goes bonkers if you try to stop him , theres so many things i could tell you but this has been going on for so long i could write a book .

    Kind regards

    Angie

  • Oh and i forgot to mention i have a grandson who has global developmental delay and autism

    Angie

  • Oh dear, it does sound autistic traits, I think it's harder to get a diagnosis when a person is high functioning. I'm in essex and there is an organisation called 'safe' they are parents of children with autism but are very experienced and can help point you in the right direction. they also liase with schools. There is also another organisation called focus that helps families and organise activities for families to get together. I know I had to make a nuisance of myself with my daughter, the Gp actually at one point said why do you want a label?! she too didn't struggle with school work and actually went to a grammar school but found it difficult to make friends. It was speech and language that helped with a diagnosis.

    If the charity website you've been given can't help, do try NAS as they will be able to put you in touch with organisations in your area. That's where I got all my help and info. You don't have to be a member to speak to them.

    What about the people who diagnosed your grandson, can they not help you?

    It's not easy is it!

    Chris x

  • Unfortunatly my two grandchildren were taken away from my daughter , and have been adopted , so i cant ask the people who dealt with is problems , and yes its hard , i also had the question do you want a label , well no what i want is a diagnosis, then i can get the help my son needs , ive already done a twelve week webster stratton early years course , and his school wont help anymore than they are unless he has a bloody label , if thats what they want to call it .

    Kind regards

    Angie

  • School doesn't sound very helpful, schools are normally bending over backwards to help get a diagnosis as it helps them in the long run. I know there not all the same! I hope you find the help you need. Good luck x

  • It could also be PDA or ODD reading that hun the problem with these neurological disorders is they dont come in ones they come in twos and threes.

    DEFINING CRITERIA FOR DIAGNOSIS OF PDA

    • Passive early history

    • Resists and avoids ordinary demands of life

    • Surface sociability

    • Lability of mood

    • Comfortable in role play and pretending

    • Language delay, seems result of passivity

    • Obsessive behaviour

    • Neurological involvement

    RESISTS AND AVOIDS ORDINARY DEMANDS OF LIFE

    • Avoidance may seem the greatest social and cognitive skill

    • Strategies of avoidance are essentially socially manipulative

    • Strategies can include

    • Distracting adult

    • Acknowledging demand but excusing self

    • Procrastination and negotiation

    • Physically incapacitating self

    • Withdrawing into fantasy, doll play, animal play

    • Physical outburst or attacks

    SURFACE SOCIABILITY, BUT APPARENT LACK OF SENSE OF SOCIAL IDENTITY, PRIDE OR SHAME

    • At first sight normally sociable, but ambiguous

    • Wants other children to admire, but usually shocks them by complete lack of boundaries

    • No sense of responsibility

    • Behaviour is uninhibited

    LABILITY OF MOOD, IMPULSIVE, LED BY NEED TO CONTROL

    • Switches between loving and violent behaviour for no obvious reason

    • Switching of mood may be response to perceived pressure

    • Activity must be on child’s terms; can change mind in an instant if suspects someone else isexerting control

    COMFORTABLE IN ROLE PLAY AND PRETENDING

    • Some appear to lose touch with reality

    • May take over second-hand roles as a convenient ‘way of being’, ie coping strategy

    • May mimic and extend styles to suit mood, or to control events or people

    • Enjoys dolls/toy animals/domestic play

    LANGUAGE DELAY, SEEMS RESULT OF PASSIVITY

    • Often good degree of catch-up

    • Pragmatics not deeply disordered

    • Speech content often odd or bizarre

    • Social mimicry more common than video mimicry

    OBSESSIVE BEHAVIOUR

    • Much or most of the behaviour described is carried out in an obsessive way

    • Other obsessions tend to be social, ie to do with people and their characteristics

    and heres a link to some info on ODD nhs.uk/news/2013/03march/pa...

    and there is the one that seems to jump in bed with all the conditions ADHD

    or theres

    OCD ocduk.org/childrens-ocd-guide

    Sensort Processing Disorder sensory-processing-disorder...

    off the top of my head

    and finally LOL the diagnostic criteria for asd autism.org.uk/about-autism/...

  • sambob73 I have just read your reply.... WOW is all I can say; I'd never heard of any of these but the PDA is like someone has watched my son an this is what they have seen.... 100% of the description is how my son is. He didn't talk until he was 2.5yrs old, now he comes out with words I've never heard of in the right context. He used to use words when he was little that people were astounded by (teachers everyone). He has OCD (mainly on me his mother), he has no respect for rules and commands and will find loop holes to not have to do what he is being told to do, he does not like to be out of control and gets very angry. He switches moods I actually researched BiPolar and Scizophrenia because his manner/mood would change so quickly. I cannot believe I have not heard of this. I am waiting for his results from the ASD from the consultants... I am glad I have read about this, as I now feel I have some ammunition if they do not have a diagnosis... how can a child have every single one of those traits and not be diagnosed!?!? Thanks again x

  • due to the changes in the sen some of this may differ slightly but the test are ones that should be covered to assess his needs As stated in Special Education Regulation:28.04(1)(c) School districts shall provide the student's parents with an opportunity to consult with the Special Education Administrator or his/her designee to discuss the reasons for the referral, the content of the proposed evaluation, and the evaluators used.

    The Pre-evaluation conference, a description of the evaluations and special education process are all listed in the '**Parent's Guide to Special Education Manual' by Federation for Children and Department of Education (DOE), 12/10/01. ** Due to changes in SEND I assume this page is not found**

    1. Educational Evaluation - an assessment of reading, written language, spelling and math.The reading evaluation includes assessment of word analysis skills (word attack, decoding), word recognition, oral reading rate, and comprehension. Educational Testing will serve as a baseline against which future progress can be measured.

    concordspedpac.org/Whichtes...

    One of the commonly administered individual educational achievement tests is the **Woodcock-Johnson Psycho-Educational Battery-Revised ( for more detail on Woodcock-Johnson subtests and cluster scores, **WJ-R or **WJ-III.), another is the Wechsler Individual Achievement Test(**WIAT) and for reading is the Gray Oral Reading Test (**GORT) are all used by the Concord school district.

    ** Woodcock johnson link - concordspedpac.org/TypesTes...

    ** WJ-R link - concordspedpac.org/WJ-Rsubt...

    ** WJ-III link - concordspedpac.org/WJ-III-s...

    ** WIAT link- concordspedpac.org/TypesTes...

    ** GORT link - concordspedpac.org/TypesTes...

    Dept. of Education defines an "Educational Assessment" of the student's educational progress and status in relation to the general education curriculum and the district curriculum as well consistent Massachusetts Curriculum Frameworks and the assessment conducted by a certified educator(s) and the special education regulation 603 CMR 28.04(2).

    doe.mass.edu/lawsregs/603cm...

    2. Psychological Evaluation - Is an intelligent test, it measure general cognitive ability.Dept. of Education defines an "psychological Assessment" by an authorized psychologist or school psychologist including an individual psychological examination and culminating in specific recommendations. Sensory, motor, language, perceptual, attentional, cognitive, affective, attitudinal, self-image, interpersonal, behavioral, interest, and vocational factors are evaluated in regard to the child's maturity, integrity and dynamic interaction within the educational context. The assessment is based on the child's developmental and social history, diagnostic observation of the child in a familiar surroundings (such as a classroom) and psychological testing as indicated. Psychological testing may include, but is not limited to: intelligence testing, educational achievement testing, personality evaluation, a vocational interest evaluation, assessment of brain damage, and neuropsychological examination.

    A. Cognitive part of the assessment, there are 3 different Wechsler Intelligence assessment that may be used, depending on age of the student:

    The Wechsler Preschool and Primary Scale of Intelligence (WPPSI) for children ages 3 - 7 1/4 years

    **WPPSI-III (3rd Editon) **link - concordspedpac.org/WPPSI_II...

    WPPSI-R (revised) older verison

    (The WPPSI-R is a revision of the original WPPSI, first published in 1967. Changed from the WPPSI to the WPPSI-R included extending the age range from 4 to 6 1/2 years, now age 3 to 7 1/4 years).

    The Wechsler Intelligence Scale for Children (WISC) for children ages 6 1/2 – 16 1/2 years

    WISC-IV (4th Edition) link concordspedpac.org/WISC_IV....

    WISC-III (3rd Edition) older verison link concordspedpac.org/WISC_III...

    The Wechsler Adult Intelligence Scale (WAIS) for students over age 16

    WAIS-III (3rd Edition) link concordspedpac.org/WAIS_III...

    ____________________________________________________________________

    Full Scale IQ ranges and general bell curve. - link concordspedpac.org/IQscores...

    For further reading "Understanding Tests and Measurement for the Parent, Advocate and Attorney " by Peter W. D. Wright, Esq. and Pamela Darr Wright, M.A., M.S.W. Licensed Clinical Social Worker (2001).

    llink - wrightslaw.com/advoc/articl...

    B. For the Attention part of the assessment another common assessments / questionnaires used to assess Attention Deficit Hyperactivity Disorder (ADHD) and related problems in children:

    **Conners Rating Scale-Revised (CRS-R), by C. Keith Conners , 1997, Publisher: Pearson

    Age Range: 3 to 17 years, adolescents aged 12 to 17 years can use the self-report forms. Time: Long version 15 to 20 minutes; Short version 5 to 10 minutes; Auxiliary Scales 5 to 10 minutes Administration: Individual, Teacher, Parent QuestionnairesParent Version , 80-item long form for parents (CPRS–R:L) and 27-item short form for parents (CPRS–R:S)Teacher Versions , 59-item long form (CTRS–R:L) for teachers and 28-item short form for teachers (CTRS–R:S)Self-Report Forms for Adolescents, 87-item Conners-Wells' Adolescent Self-Report Scale-Long (CASS:L) and 27-item short version (CASS:S) Short form reports 4 symptoms categories: Oppositional, Cognitive Problems/Inattention, Hyperactivity, and AD/HD index.Long form includes 14 symptoms categories: Oppositional, Cognitive Problems/Inattention, Hyperactivity, Anxious/Shy, Perfectionism, Social Problems, and Psychosomatic. Along with: DSM–IV ADHD symptoms, Conners' ADHD Index, Conners' Global Problem Index, Family Problems, Emotional Problems, Conduct Problems, and Anger Control Problems. Feedback Forms and graphics give important information in an easy-to-understand format.

    **link pearsonclinical.com/psychol...

    C. One of the common assessments / questionnaires used to assess behaviors and emotions:

    **Behavior Assessment System for Children (BASC) , by Cecil R. Reynolds & Randy W. Kamphaus, Publisher: Pearson

    Ages: 2 to 21 years 11 months for the Teacher and Parent Rating Scales, Administration Time: 10-20 minutes. Ages: 6 to college student for the Self-Reporting of Personality Scales, 30 minutes to administrator.You can view Clinical and Adaptive Scales, and download sample of seven different report types.The BASC measures 16 primary areas (not all areas are measured on each Rating Scale. It depends on who is filling the form out (i.e. parent, teacher and student.), and the student age.) The scales are in the following areas:Activities of Daily Living, Functional Communication, Adaptability, Hyperactivity, Aggression, Leadership, Anxiety, Learning Problems, Attention Problems, Social Skills, Atypicality, Somatization, Conduct Disorder, Study Skills, Depression, and Withdrawal.

    ** link .http://www.pearsonclinical.com/psychology/products/100000658/behavior-assessment-system-for-children-second-edition-basc-2.html?Pid=PAa30000#tab-details

    3. **Neuropsychological Evaluation - The Neuropsychological profile gives you a global picture of your child's approach to doing things, based on patterns of strengths, weaknesses and integration among a range of neurological measures. A good way to diagnose ADD, autism, PDD or specific LD issues. (This evaluation is done when there are learning, behavioral or social concerns.)

    Parent comment: "This is the best evaluation we ever had done. It told us how our child learns. He enjoyed the testing, especially missing a day of school!" M.O.

    ** link concordspedpac.org/Neuropsy...

    4. **Functional Behavioral Assessment (FBA) - Functional behavioral assessment is a problem-solving process for addressing student problem behavior. It is used to identify the purposes of specific behavior and to help IEP team select interventions to directly address the problem behavior. It is the process of determining the cause (or "function") of behavior before developing an intervention. FBA is used to create Behavior plans, contain: strategies, document skills the students need in order to behave in a more appropriate manner, or plans providing motivation to conform to required standards. The plan should be proactive, positive intervention plans that teach new ways of behaving, and address both the source of the problem, by serving the same function, and the problem itself. The interventions must be based on the hypothesized cause (function) of behavior

    ** link concordspedpac.org/FBA.html

    Related Assessments:

    5. Speech and Language Evaluation - an assessment of receptive language (the ability to understand spoken language), expressive language (the ability to formulate and organize oral language and written language), phonological processing (the ability to manipulate individual sounds within words), articulation, voice, auditory memory, pragmatics (the ability to use language effectively to interact with people). One of the commonly used speech and language test used to assess expressive and receptive oral language is the CELF = Clinical Evaluation of Language Fundamentals.

    ** link concordspedpac.org/TypesTes...

    6. Auditory Processing Evaluation : An audiologist evaluates, identifies, measures and treats hearing disorders, loss and central auditory processing (CAP) issues. This evaluation is performed by Audiologists who are found at most major hospitals, school do not perform this evaluation.

    Note: **Central Auditory Processing (CAP) and Visual Processing, also involves short-term memory, represents the actual quantity of pieces of information taken in by either the auditory or visual areas of the brain to understands, interprets or categorizes information, not the hearing organs themselve

    ** link concordspedpac.org/CAPD.html

    7. Occupational Therapy (OT) Evaluation - an evaluation of **fine and gross motor skills,** visual motor **integration, **visual perception or visual processing, (The terms, "visual processing" and "visual perception", are often used interchangeably. See the "Note above.) and **sensory integration (SI).

    **fine and gross motor skills, link concordspedpac.org/TypesTes...

    ** visual motor link concordspedpac.org/TypesTes...

    **integration link concordspedpac.org/TypesTes...

    **visual perception link concordspedpac.org/TypesTes...

    ** sensory integration (SI).link concordspedpac.org/TypesTes...

    8. Physical Therapy (PT) Evaluation: An evaluation of physical activities such as sitting, standing, crawling, walking, running, and climbing. It looks at your child's body strength, coordination, balance, and symmetry as he moves and control his body, and how he plans new motor activities. The PT will want to do know what your concerns are about your child's development and why you wanted to do have a PT evaluation. The PT will ask you about your child's birth history and developmental milestones. Your child's typical routine during the day and what his favorite and least favorite activities are, and what sort of outdoor games or playground toys he enjoys.

  • You could try to get a private diagnosis done, that's what I had to do as I couldn't get the NHS interested. It is expensive but there are some charities which will do this.

  • Give me an idea how much , and which charities can i try , most grateful for any info

    Kind regards

    Angie

  • Could you name these charities , i would be most grateful for any help

    Kind regards

    Ange

  • This is the charity I used actionforaspergers.org/diag... its in Northamptonshire UK. The lady who runs it is very helpful and might be able to advise you of where to go if it is not in your area so you could try emailing or phoning.

  • Thankyou i will try this , thankyou for your support also ,

    Kind regards

    Angie

  • Good luck

  • Hi hun, I so empathize with you I have a face book page dysability info school inclusion with loads of files regarding sen and some diagnosis info etc also a list of legal advice here are a few for you xx LEGAL AID

    Civil Legal Advice (CLA) Online enquiry formTelephone: 0345 345 4 345 Minicom: 0345 609 6677Monday to Friday, 9am to 8pmSaturday, 9am to 12:30pm Find out about call charges

    You can get help with legal aid for:

    benefit appeals

    debt, if your home is at risk

    special educational needs

    housing

    discrimination issues

    help and advice if you’re a victim of domestic violence

    issues around a child being taken into care

    You can also contact CLA if you’re unhappy about the service you’ve received from them.

    website - gov.uk/civil-legal-advice

    IPSEA

    ADVICE AND SUPPORT

    IPSEA's trained volunteers give free, legally based independent advice and support in England to help get the right education for children and young people with SEN/disability. You can also get help by looking at the website resources on our Home page.

    ADVICE LINE: 0800 018 4016

    If you cannot find the information you are looking for on our website and would like to speak to one of our volunteers, you can ring our Advice Line. You can also book a call at a time that suits you by clicking here.

    THIS WEEK'S OPENING HOURS:

    Thursday 18th Sept: 10am - 4pm and 7pm -9pm

    Friday 19th Sept: 10am - 4pm

    Monday 22nd Sept: 10am - 4pm and 7pm - 9pm

    Tuesday 23rd Sept: 10am - 4pm and 7pm - 9pm

    Wednesday 24th Sept: 10am - 4pm and 7pm - 9pm

    Thursday 25th Sept: 10am - 4pm and 7pm -9pm

    Friday 26th Sept: 10am - 4pm

    Weekends and Bank Holidays: CLOSED

    Website - ipsea.org.uk/contact/advice...

    SOSSEN

    What We Do

    We offer a free, friendly, independent and confidential telephone helpline for parents and others looking for information and advice on Special Educational Needs (SEN).

    We concentrate on helping people to find their way through the legal and procedural maze which is so daunting to so many who try to obtain satisfactory provision for a child’s special needs.

    Contact Us

    Helpline

    Need help? Call our Term Time Helpline!

    Call 0208 538 3731

    We offer advice on:

    getting the right help for your child

    dealing with the school or local authority

    interpreting official letters

    getting a statement for your child

    finding independent expert professional advice

    appealing to the Special Educational Needs and Disability Tribunal

    Website - sossen.org.uk/index.php

    Contact a Family

    For information and advice on any aspect of caring for a disabled child, parents can call our freephone helpline and talk to one of our parent advisers.

    Our helpline is available from Monday to Friday, 9.30am-5.00pm, on our freephone number 0808 808 3555.

    Website - cafamily.org.uk/our-advice-...

    -----------------------------------------------------------------------------------------------------------

    ARENT IN PARTNERSHIP VISIT WEBPAGE TO FIND YOUR LOCAL ONE

    The Information, Advice and Support Services Network (IASS Network) supports and promotes the work of Information, Advice and Support (IAS) Services across England. We are based at the Council for Disabled Children.

    IAS Services have a duty to provide information, advice and support to disabled children and young people, and those with SEN, and their parents. They are statutory services which means there has to be one in every local authority.

    iassnetwork.org.uk/

    PLEASE call one of them or all of them LOL, The thing with the "new legislation" is that support is supposed to be based on individual not diagnosis, yes we all know this is a load of pants and happens poss 1in 10,0000 BUT it does give you a legal leg to push for and Educational Health care plane and part of that is getting reports, My son is 14 in april and we are at tribunal the same time over his statement, that the SENCO in primary and secondary said we would never get, it has taken 3 years with the legal aid solicitors help, but if you cant get legal aid Ipsea are fantastic and will talk you through every step of the way, My son was diagnosed adhd in 2012, and the severe receptive and expressive lang disorder and DCD Jan 2014 ONLY because reports needed to be done for his statement assessment, independant OT even informed me a couple of weeks ago that she thinks my sons No diagnosis for ASD back in 07/08 was due to his speech and language issues and feels it wrong !!! so move over one of the bricks on that wall has my name on it :) x

  • OMG This is my son.... he is 12 years old and everything you have put in there is 100% identical to him. I was trying from him being 5 years old to be diagnosed. I have been told he has dyspraxia, however we have since moved to Devon and here we can self refer. The wait list I was told was 12 - 18 months however my persistant nagging and calling and emailing, he has just gone through his full assessment. We were told end of February we would have the report, however they now tell me they want to meet me tomorrow and discuss it. I am very anxious, my son is now praying he has something wrong with him becuase he wants an explanation for his behaviour. His IQ is off the scale, he has had 2 IQ tests, he is classed as talented and passed his 11+ for the Boys Grammer in which is presently one of the top if the not top in the year at all subjects. His behaviour however is identical to how you describe your son. My son also has OCD. He cannot read body language or facial expressions and comes out with things that are inappropriate in places and with people that inappropriate too. He has never been given SEN and CAHMs never supported him where we did live, they said he needed a Male Mentor and they didn't have one so 2 years later and still waiting and my begging and crying at the GPs got me no-where. When he smashed the house up, attacked me and my mum (his grandma) and I called for help to the GP and CAHMs I was told to phone the police!!! Or take him to A&E, like I could actually get him in a car!?! Why should I phone the police on my son who to me clearly had special needs???? I don't know what to suggest but to keep doing what you are doing... I am single mum with 1 child with challenging needs/behaviour which is difficult (very difficult), my thoughts and strength go out to you xx Elle xx

  • sambob73 I have just read your reply.... WOW is all I can say; I'd never heard of any of these but the PDA is like someone has watched my son an this is what they have seen.... 100% of the description is how my son is. He didn't talk until he was 2.5yrs old, now he comes out with words I've never heard of in the right context. He used to use words when he was little that people were astounded by (teachers everyone). He has OCD (mainly on me his mother), he has no respect for rules and commands and will find loop holes to not have to do what he is being told to do, he does not like to be out of control and gets very angry. He switches moods I actually researched BiPolar and Scizophrenia because his manner/mood would change so quickly. I cannot believe I have not heard of this. I am waiting for his results from the ASD from the consultants... I am glad I have read about this, as I now feel I have some ammunition if they do not have a diagnosis... how can a child have every single one of those traits and not be diagnosed!?!? Thanks again x

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