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poll 1

Member Comments

Because of the breadth of FIGS membership, we opened a poll to take in to account the views of members who may be neither parents nor of statutory school age. 


Our community includes many who have recently completed education, and their insight is critical as the autistic voice is frequently ignored. 

FIGS believe that the current educational system is setting up young people down.


4% of respondents felt supported during their time in education 

96% felt unsupported and did not feel their needs had been met or understood 



Comments – these comments have been redacted: otherwise they are verbatim as given by our members. Each comment is from a different member in response to the poll question above.



My daughter didn’t feel supported or needs met. Since diagnosis that’s changed and she is now supported.


No My mental health was completely ignored I tried to take my life and the head of pastoral told me I was silly and stupid. I was an A to B student so they didn’t care about me as I was going to pass anyways

Absolutely no support all through school. I was labelled as “painfully shy” by teachers, my parents voiced concerns several times and I was self-harming from the age of 14 to 17 and not eating but staff said I was “a nice girl but just shy” I was finally diagnosed at the age of 35 last year. I realised I was on the spectrum myself when my daughter was going through her assessments 


No. I had no support through education (or parents). I got good grades but tried to kill myself and self-harmed and had eating problems. My teachers told me to smoke as it was more acceptable than self-harm. No one was allowed to know I tried to kill myself as I had to say ‘female issues’. I was told I was burdening my friends - by a teacher, bullied (and told it was because one of the guys liked me) and basically told I was difficult and humiliated.


Second school, SENCO was the problem in not supporting and helping, she blamed my eldest and wouldn't cooperate with CAMHS who got annoyed with her.


Answering on behalf of my daughter as she doesn’t do social media. She was diagnosed at 13. But by year 5 & 6 she was really beginning to struggle and her attendance was dropping. The school made no attempt to find out why or what the matter was just sent the EWO to us. She managed 6 months at secondary school before she stopped going.


In my daughters words ....

School said I could either be autistic or a girl, not both, intelligent or autistic, not both.


Whenever they discussed autism with me they put it in a negative light eg “ you don’t want to have that diagnosis, you are better than that”.

My mum was told in a meeting that I was too intelligent to have special needs.


I eventually (after 4 years) got a place with autism outreach in an autistic base at a different school, it was only due to this that I managed to get some GCSE’s.


I always thought I wanted to go to university as I love studying and acquiring new information. But have recently decided that I can’t go back into education it has too many painful memories for me.


What would make it better? All teachers to have a basic level of understanding of how autistic girls present. That you can be intelligent and a girl and autistic. Special needs teachers to all have re-training so they are more likely to recognise it. EWO’s to have training on identifying the signs and not just immediately assume it’s the parent’s fault, or even worse the child’s fault that they find school difficult.

Question

Did you feel supported during your time in education and were your needs met and understood?

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Poll 2

Member Comments

 

Our second poll focussed on the experience of parents and carers trying to work in collaboration with their child’s educational setting to both support the child and seek a diagnosis.
These results are a concern as the diagnostic process in England places great emphasis on the views of a school setting – in the case of secondary school aged children, this may be a form tutor who only sees the child for 5 minutes a day.
If a school is not supportive, it can delay the diagnostic process by many years; all the while the child may be displaying more concerning behaviours, and developing serious preventable mental health conditions.
In the worst case scenarios schools may (and do) implement safeguarding concerns against parents, including those for FII (Fabricated and Induced Illness) (Formerly known as Munchausen’s by Proxy).

70% said that settings HAD NOT been supportive  
30% felt they HAD been supportive



Comments below are redacted, but not changed. Each comment represents the views of a single member.


They told me she was naughty and I'd self diagnosed with google. Also been saying for years I believed she was dyslexic and got told nothing was wrong with her, 3 camhs sessions and they saw that.


I recently wrote an email to a local parents group who will be sharing my experience when my daughter was at pre school, I’m happy to email/inbox a copy of this over if that helps? X
The school wasn’t ‘unhelpful’ and were verbally supportive but didn’t actually DO much. I had to make all the suggestions and it was me who kicked off the EHCP. I think they are a nice school but just didn’t have the capacity or oomph to lead in the support.


It a lottery. I had a well informed senco that was the catalyst for diagnosis.


Even after diagnosis they didn't believe me. Now with a new SEN team and applying myself we have just got a EHCP
I said from primary for 19yo there’s a problem - dyslexia I said.


At 17.5 diagnosed with ASD, at 18 diagnosed with severe dyslexia, I’d paid privately to have her irlen assessed at 12, severe with irlen.


She’s had an awful education as a result, she’s now flying at college because she understands herself, she has an EHCP and she has support.
13yo been under paeds since she was 3, referred to camhs last summer with a flaky social anxiety disorder diagnosis to shut me up. Waiting to see camhs for her anxiety, she’s likely ASD too, but that’ll be a further 2yrs if camhs agree to assess...


Ended up going private with my daughter, SENCO still fought me for 3 years saying she didn’t have SEN..


It was the SENCO officer who suggested trying get a diagnosis for my daughter


Although preschool agreed with the referral, and we had 2 paed appointments. They then said she was fine so we were discharged with nothing.


I was told she was a typical middle child
Only child syndrome here apparently
here it was because we had a new baby
Ha! For us it was typical only child!


We did have support with my first daughter but this was a few years ago and her difficulties are pretty obvious. My second daughter is nearly 9 and we've been told "terrible 2s, learned behaviour and now teenage hormones" over the years. Still no support for her.


They said her behaviour at school was fine, she was just shy and a bit anxious. They didn’t recognise she might be masking and implied that there were probably issues at home causing the behaviour I described.

I requested support and raised concerns about my daughter's needs socially and emotionally from age 7 and queried dyslexia/sensory processing before ASD, school repeatedly gave me one reason after another why .. because she was maintaining the bottom edge of the academic baseline for her age group she didn't need testing or further support. 4 months before her GCSES she had a total break down...was completely unsupported... failed almost all her GCSES and took 2 years to get back into education and still is seeking diagnosis and support in adult services at 20 all because the education system consistently refused to assess
Not at primary x ended up not being able to sit her sats !! Resulted in not getting a diagnosis !!!! Secondary have been much more supportive and can’t understand how she hasn’t been diagnosed, we are currently awaiting our 3rd asd assessment


No, and not only that we were labelled as the problem, whilst our daughter became suicidal and self-harming at the age of 7.
we were told she is to bright to have asd


No kid is too bright for autism, what nonsense they spout!
I can’t thank the school enough for their support - we have been so lucky


I feel so lucky that I spoke to the primary school headteacher when the information about girls with ASD was first coming out and even though they hadn’t noticed much she straight away got an Ed psych in to evaluate. We were offered a full assessment then and stupidly turned it down!!


As soon as we got the diagnosis, some staff members turned hostile. I think this was because the senco and teacher realised they would be under more pressure to follow the professionals' advice (mostly PDA approaches. This school didn't like those!). Suddenly my then 5 year old was 'fine', the after -school sensory overload, meltdowns and mutism were normal for all kids etc etc. They pursued their goal of making our daughter 'independent and in school full-time'..which resulted in severe mental health deterioration including self harm.


I voiced my concerns but was accused of being a anxious mother and was not treated fairly. Then a new senco came into school and she knew straight away something was wrong but we still had to go private but it was all accepted by the school
She was in y9 at the time and they'd been watching since Y7 because Primary had highlighted suspicions TO THEM. Neither spoke to me, which would have confirmed my own suspicions. She had to hit a crisis before they did, and has struggled ever since. Wish someone had spoken up earlier... But at least they never argued against me.


Yes for my boy and no for my girl!!!


The school didn't involve the senco. The teachers and HSW thought that they were more qualified than a Consultant paediatrician who specialises in neurobehavioural conditions.


No. Primary fought it from nursery to P7.
Had to change my daughter's school and now I'm listened to but very difficult to explain when she does it at home xx
We weren’t supported at first, after moving house to new and getting new GP, we were referred after 9 years of trying. Our new GP made a very big difference to us.


School been good but disappointed with the CAT team. They diagnosed then left me to my own devices. Not impressed by them at. It was school and ed psych that were most helpful.


With my eldest the HT and principal sat in a meeting with me and when I mentioned my concerns that I felt she was autistic they both scoffed and laughed and told me "don't be so silly! She's not got autism!! She can talk!!" I'll never forget those words. My middle girl was supported by nursery in getting her diagnosis. Same nursery refused to support my third girl and they refused to accept her diagnosis or support her. All support in place was from me fighting for it or doing self referrals.


My daughter's school not only didn't support our GP referring her for assessment, but also refute that she is autistic. They are 100% to blame for her huge increase in anxiety which has impacted her behaviour - what they see on the outside. This masks her autism more than when she was actually masking
my school was exactly the same ,they caused her anxiety to increase to until nearly 98 percent across the board .and started self harming .🥵,we had to remove her from school .for 6 months .she never returned there .and started at a fab school .she will be staying there for senior school as well , so really happy .


The first school did try supporting but due to bullying, we tried a second school, the teachers tried, the SENCO was the issue and laid too much blame on my eldest, ended up deregistering.


It was actually told to me by camhs that the teachers said there was no chance of her being on the spectrum and I was basically one of those mums (despite the fact I didn't do this with older two kids), reading camhs report basically said mum says, school says not on everything throughout report, it really annoys me that school get such a big say in this, they aren't qualified to give this opinion. Comparing camhs V 2nd opinion reports, one may as well say munchausen by proxy (camhs), and the 2nd couldn't be more different, it is literally like reading about two different children.


At Primary school no.no support at all.T hey didn't support a diagnosis & when we had it they made no adaptations to help. Only those instigated by me despite recommendations from Professionals. No Sensory Circuits, told she didn't need headphones in English lesson. No reminders for things. Senior School are a world apart. Tried to put us off applying for EHCP at Juniors told us lots of lies about criteria for EHCP. Senco ignored me, sent numerous emails as concerned about transition to Senior School Daughter has a medical condition too as well as Autism.


EHCP paperwork merely said "****** has Autism" that was it.
With my son no, with my daughter, yes; I do think they had take notice of me after they’d failed my son so badly
Nope, during nursery, reception and year 1, teachers labelled me as being pedantic and "barking up the wrong tree" over and over. Every time is ask for help , I was told she's fine for us so must be your parenting.


Camhs hospital team suggested autism, camhs community team didn’t listen - said anorexia. Same effing team.


No. Even with diagnosis school still don't think there is any problems. Definitely don't think extra support is needed. It is very scary how much power schools have been given in the camhs and asd assessment process.
I don't know how to answer. Initially, when I approached a depute head, regarding my concerns, she told me there were no problems. When I spoke to her again, about 4 months later, she had completely changed her mind and put forward a referral to SALT. But, there was another depute head in the room, at the time, who got involved in the discussion, and I feel that might have been the reason her view changed. Had he not been there, I might not have been so lucky.


All we suspected for years was dyslexia, and three successive schools played that down. Secondary school was the worst. Dd was hiding her autism so well that the effort made her repeatedly ill, which eventually led to medical investigations and ASC diagnosis when she was 12. However, for an informed observer, there had been a clear trail of clues/ evidence since she was three. Secondary school was reluctant to support any diagnosis or investigations - believed we were making the illness up and magnifying anxiety issues by pandering to her.


Home evidence not listened to, or taken seriously, seemed to be the refrain at school until she was diagnosed at hospital.
On first voicing my concerns about possible asd the headmistress told me she had worked very closely with autistic children and there was no way my daughter was autistic there were no issues at school the issue must be at home that’s why she was melting down and school refusing and physically ill with anxiety, a few more months on the Ed’ psych’ (after about an hours observation) said that she saw traits but not enough to diagnose. A few more months on and camhs recognised enough to put her forward for assessment.


So glad I listened to my gut and found supportive online communities like this and not listened to that headmistress.
School missed so many issues which are indicators of female presentation of autism e.g. a verbal tic, many were described as "normal" for a girl of her age; they said because she was performing to her expected level academically that she wouldn't get extra help; didn't/couldn't help point me in the right direction for any support at home; they even accused me of seeking a diagnosis as an excuse for my parenting skills! In fact at one point, after I'd been particularly awkward, they requested that the autism outreach didn't come back - I have a copy of the email from Head to Autism Outreach, as a result of a SAR I made for all the details of my daughter.


No support in primary.
Flagged in Year 2 by teacher ‘if F were a boy I’d think ADHD’ - we pursued this with school and followed their lead - which was nothing.
Year 6, F had a breakdown when she could no longer ‘hide’ from her peers.
I dragged her in to school over the next academic year despite her anxiety attacks and eventually realised that I was being fobbed off by school when I thought they were supporting her - infact they weren’t so I pushed them hard to start the EHCP 1st cycle of evidence. They sidelined F from all her usual interests in school. I didn’t have one conversation with her teachers about how F’s behaviour had changed, even after she had a diagnosis. Secondary school is a whole different class, don’t know if it will work but at least their is a conversation and care.
I feel like I need a third option ‘yes but not immediately- it took a huge amount of explaining, persuading, being made to feel neurotic - to then receive support’


I need a third option - they didn’t recognise it at first but wholly supported me and believed that what we saw:/described. They supported us immediately when we decided it was time to seek diagnosis.


School did definitely not recognise concerns although they gave her their standard pastoral support and did not escalate my concerns. Because she was bright and well-behaved in school they did not take seriously my concerns about her struggles with socialising and deeply worrying angry and extreme behaviour at home (meltdowns). They did not recognise the profile at all. There were clues - she was staying under the radar by being a model pupil, she was scared of being different, she felt a lot of anger in the lessons and internalised it (often provoked by actions of another child), she had anxiety in lessons that made her arm go dead, she experienced sensory difficulties that caused headaches, to self-regulate she daydreamed and looked out of the window, she could barely eat in school, the playground caused considerable stress. Had a breakdown aged 11, only in high school for 6 months and she has still not recovered aged 15. Not attending school, barely accessing learning. Has been let down by the system.
Not for a long time, then school started to come round until Ed Psych dismissed her, then it took another 18 months of nagging and pestering and showing evidence and pointing out the significance of some of her ‘easily overlooked’ behaviours.


They told me she was shy like her Mum. The school nurse refused to come out to see us as she trusted the head teacher. We had to go to our gp for referral, which we got after the 3rd visit.
My 13 year old diagnosed back in May "she is fine when she is in and just overly attached to mum" had to refer to camhs through gp as they never recieved either of the schools referals.
 Youngest "we don't see any of that in school" despite once having a meltdown after school running into reception and blocking the doors so I couldn't get in! Is in the system awaiting assessment
yep “overly attached to mum” was said to me too
Why is it so hard for them to see that they just feel safe with their mum because their mum actually believes them.
Yep. I've got one who is 'overly attached to mum'. Despite our efforts to explain that this demonstrates how tough our daughter finds social interaction it was always, without fail, blamed on 'mum who must be anxious about separating from her only child'. This is one feature of autism I would love to be better understood!
I have 5 so they can't even blame it on her being an only child
Indeed! They always seem to choose 'something ' to pin blame on!


Primary school SENCO claimed to be an expert in autism yet had never heard of masking. Kept insisting my daughter was fine despite spells of being unable to go into classroom, attend school or wear uniform and my daughter even telling her she couldn't cope. This led to investigation of FII and no end of trouble and she kept this up even after a two and a half month inpatient stay.. She said applying for an ECHP was impossible as there were no educational needs and when I applied myself she told the educational psychologist that the issues were due to poor parenting and lack of boundaries. She prevented the planned transition into secondary school by lying to the school telling them that the psychiatrist had said that she should not attend with her friend to keep her company. So she never managed to get to secondary school, now year 7 and missed 2 years of education
School laughed when I suggested autism for my now 14yr old.... Bcoz hes too good! Now has an ehcp and diognosis of social communication anxiety and dyspraxia. My 12yr old daughter's primary school said no, made it very difficult, lost tribunal for ehcp. Now in yr7 and have a very supportive on board senior school and a referral to Gillian Baird. My 8yr old son was diagnosed B4 school and sen nursery did ehcp.


Yes but had to reach her being at the school refusal stage - we live in the UAE.


Well after 4 years of NO education I am still waiting on what procedures were followed,,6 e mails have been sent,,


Not on board for 4 years. Now being very supportive.
No. Naively, when my girl was in year 2, I assumed that school knew better than me and if there were any issues with my girl that they would take the lead. When my girl broke down in year 6, I was astonished at the lack of response, communication and care from school =, like I was making it up…despite me emailing how difficult it was to get my girl up and dressed and in to school and filming her morning anxiety attacks...just no response. We had to go private when F was talking about self harming, even after diagnosis, no conversation with school.


sorry your daughter’s going through all of this! Exactly the same as my daughter and school! We did the same and thought school knew best! I’ve learnt that our instincts actually are


They were shocked after diagnosis and even suggested doing school questionnaire again.... so much for support and strategy’s

Question

When you raised concerns with your child’s education setting, did they recognise your concerns and support you seeking a diagnosis for your child?

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Poll 3

Members Comments

We asked our members to consider whether they believed that a failure to support their children in educational settings had resulted in mental health difficulties. 


It is vital to understand the connection between ASC and mental health problems, particularly for girls. 


Without a diagnosis or support, autistic children can be very vulnerable to mental health problems as they try to create strategies to ‘cope’. We need to see increasing numbers of healthy autistic girls being diagnosed before they also suffer harm to their mental health. 


Many of our members report their daughters receiving diagnoses of co-concurrent mental health difficulties requiring CAMHS Tier 3 intervention prior to any ASC pathway being accessed, or an ASC Diagnosis being received. OCD, Eating Disorders, PTSD, Anxiety and Depression Disorder, Self Harming and Suicidal ideation and suicide attempts are all too commonly experienced by autistic girls. 


Additionally, without a diagnosis, mental health therapies are not adapted, leaving children unable to access the care and support they need to return to health. 


89% of respondents agreed with the question – their children had suffered mental health difficulties

11% of respondents felt that no harm had been suffered 


Comments 

Each comment had been redacted, but it the view of an individual member responding with more information about the statement above.


I am convinced that if she had been diagnosed years earlier, when others were pushing she wouldnt have the severe anxiety she has now.

Definitely. She’s so chilled now. Self harming at 14, addicted to caffeine etc etc. She still has trouble with alcohol but we talk through everything now.

Yes but to be fair to the school and ourselves we had no idea she was autistic until she transitioned to secondary. The experience completely broke our daughter but I genuinely don’t know that it could have happened any differently?


This is difficult to answer. As the local primary ( Scotland) did what they could but as its an open plan primary it was always difficult. My daughter has always been very vocal (doesnt mask) and im convinced that they gave her more import because she is exceptionally clever academically. 

Obviously, thats very wrong 


My primary daughter used to come home and meltdown explosively straight after school everyday because it was all too much

Yes. Suicidal and self-harming from age of 7. She's now on medication and in a supportive mainstream who are slowly helping us to repair her mental health. And guess what, our parenting hasn't changed, only the school - guess we aren't just crap parents afterall. 

they blamed my parenting for years !! Infuriating


it's so awful. Especially as our eldest is flying, and always has done. How do they think we got that right? Fluke?!?!


The biggest issue was the new headteacher. She's a bully to both kids and parents. I'm so glad we got her out of that environment.


It makes me very sad when I hear so many who have been through similar.


I did at school I self harmed and tried to take my life at 16

My school told me I was silly


Not yet.... but mainly because I have put stuff in place and teacher has agreed to it all x


Yes. My child came out of school crying all the time, ignored by teachers. Physically hit by other pupils.


The first primary didn’t support enough, which hurt after I did a schools admission appeal to get her in.


Second Primary were amazing, as is her secondary. Without them I wouldn’t be able to run my ASC Advisory business.


Most definitely as all they were worried about was attendance not what her needs were connected to attending school.

Threatening me with the EWO doesn't go well with me.

This is why we're in the position we are now of my daughter completely not going to school.

Nobody took her anxiety seriously and I was told by her deputy head in year 7 "She just can't be bothered to come in" so I bit her head off.

The whole attendance has gradually got worse since she was 7yrs old.

The second secondary teachers tried to support, the SENCO couldn't be arsed and even CAMHS got annoyed with her. Found out years later, teachers in primary had suspicions but kept quiet and didn't say anything at the time.


My daughters secondary school had so many great support systems in place that really helped, but as soon as she started year 10 they insisted on her being back in the classroom and her mental health spiralled quickly. I still can’t understand why being in the classroom became the be all and end all when her results were better in a smaller support unit! We ended up having to remove her from school and have started with home ed.


Primary one and two, dd was able to mask to an extent but exploded at home. Primary 3, the wobbles and meltdowns started within the classroom that was met with sanctions, removal from classroom and restraint. This was despite a Dx, her school maintained she was fine and refused to support and accommodate. This led to school avoidance and refusal and the quickest deterioration of mental health and physical health that I have ever seen. At 8 years of age my dd wanted to die, self harmed and talked of being useless and not worthy of life. Not worth the fight. She was de-registered in order to save her. Best decision ever. 

Yes. Mental health was deteriorating even as we prepared her for school. In 6 months she withdrew completely and wanted to be 'made dead'. She also said she couldn't stop pulling her eyelashes out. School did not want to know. ..so we took her out and she started laughing and smiling again.

Meltdowns at primary school, self harm at secondary 


Definitely my daughter is now 20, 3 years since she was at school and only now slowly beginning to show some signs of recovery.

Oh yes!!!


In primary school definitely. The senior school has been supportive and shown some surprising thoughtfulness

I ticked yes, but it wasn’t so much a failure to support as an inability to support through lack of resources and staff. Also each process related to support takes a long time to action and often involves parents chasing and checking up that agreements have been put in place.

Playgroup noticed her need for predictable routine and trusted adult (me). When I eventually left her with them, her nightmares began. Nursery and reception year went well, but from y2 onwards until starting special school age 14, she experienced what her psych now thinks of as ‘ACEs’ - through not being understood at school. She now experiences herself as having multiple personalities, and has many school-related anxiety triggers.


Yes. It's heartbreaking.

Yes. We home ed now.


She has mental health issues but not down to school.

Yes anxiety, school refusal ( despite excellent secondary school we have now) and possible self harming.


Yes anxiety. Says she’s scared of school. Says teacher is mean!

Severe anxiety from yr8 onwards, leading to school refusal and eventual diagnosis. Anxiety and low mood now embedded in her day to day because of incredibly low self-confidence and self-esteem. The support in school was there but their and our failure to see latent ASD meant it wasn't of the right consistency. Her resentment of school systems and of us as parents is sometimes quite overwhelming.


Breakdown aged 11 at high school and significant life debilitating health issues now mainly around anxiety, is unable to attend school, minimal learning with home tutor (15 mins) - nearly 15 years old. She tries hard when she can and is consumed by exhaustion. She used to have a typical social life and was in the top groups at school. Finding ways to give her a morale boost is difficult because she feels her life overall is over due to low energy. If only school had taken me seriously al those years ago about her struggles at home after a school day, she had extreme meltdowns at home for years and we had no support. My daughter's experience of school is that she is misunderstood and teachers do not listen, this has given her trust issues and she left with PTSD.


Yes my daughter is 10years old and been off school since last April.

I’m saying ‘not yet’. She is in a small school where between us and a good Head and a supporting class teacher we are managing. However, they still don’t totally get it in school and we have meltdowns most days....how on earth she will cope next year in comp I don’t know


I’m currently having to go up there every week, sometimes more than once, because of the way the schools are with my girls at the moment and it’s not getting better. I’m seriously considering home schooling them again.


Senior school has been hell for my girl now on her 3rd place and in yr 9. Confidence has gone, sleeping is now an issue and luckily where she is atm they have a counsellor who she sees weekly 😥

Still ..


The attendance officer saw Autism before diagnosis as she had an Autistic niece.this lady attended every meeting that the school had and failed to deliver and was beside herself..Our D now virtual schooled thanks to this lady not a teacher but a Mum at work .without her we doubt our Daughter would still be alive today


Yes but support is now in place.


Yes. My girl had a difficult start to year 6. We thought she was being bullied. As we had taken schools lead and not pursued an assessment during year 2 we did not know what was happening. She began to get emotionally upset and anxious over that term and I dragged her into school and left her in an environment that I wasn’t sure was caring, although on the surface the the staff appeared to be. My girl had a breakdown during the autumn term, my heart broke as she gasped over and over ‘I can’t do it anymore, I can’t do it anymore’. I later asked her what she what she couldn’t do anymore, her reply was ‘life’ she was 10 years old then. I kept her home but took her back in 2 days later thinking it was the right thing. It was not...school wouldn’t have an honest conversation and I was fobbed off. They didn’t give her a part in the school play when before she was always in the front, singing solo. By Christmas I couldn’t ‘be good’ and force her into school anymore. I told the head and all she could say was that it would have to be an unauthorised absence-told her that was the very least of my worries, that we needed a new plan in January and took my girl home. In January nothing changed except my daughter’s mental heath deteriorated and she began to tell me how she was hurting herself at school and wanting to stab scissors in her eyes. Alarm bells rang and I emailed the head, the teachers, the senco, no response...in fact day after this, I could see the head ahead of me and was expecting her to be shocked too and say something but no, she went into her office and shut the door before I could get to her. I was petrified for my girl who was disappearing and spiralling downwards before my eyes. She stopped going to any clubs and activities as she shut her world down. I felt desperate and told this to school ‘I am shouting out for help and no-one is answering or noticing’. I threatened and pushed that school to support my girl which they did in part after she had a (private) diagnosis and I forced them to start the EHCP process. Got her through the school year and had a fantastic transition to a great secondary with a proper Senco. I wrote a 6 page letter of complaint to the governors and copied to anyone who had any clout. I sent all involved loads of info about autism in girls and asked them not to let any other girls suffer like my girl had. Got an expected response however, I heard that the head has just retired. I like to think I played some part in that 


Well done you, for getting through such a hideous situation. We did the same as you...emailed report to the governors and ofsted and we just had stone cold silence. It still angers me. I think it's important that we have these traumatic stories heard and acknowledged. Hope your daughter is doing much better now 


she is yes. I don’t know if she’ll stay in mainstream but we’re all doing our best. Best of luck to you 


My daughter’s lack of support throughout primary school has led to school refusal one term into secondary school. I was hopeful that the Senco in the new school would understand her, but sadly not the case.

Question

Did your child suffer significant mental health difficulties due to educational settings failure to support them?

Find out more
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poll 4

Member Comments

We wanted to explore the EHCP process and how educational settings support families seeking an EHCP (Education, Health and Care Plan). 

This is critical as without an EHCP, many schools are unable to fund or plan for the needs of a child, and assessments of a child’s need are not undertaken. 


For autistic girls, many of the adaptions that can be made in school are minor, but make an an enormous difference in their ability to remain in education and reach their potential. 


However, some autistic girls are so traumatised by their experience of school that they require access to a specialist setting, perhaps for their Social Emotional and Mental Health needs. 

It is worth noting that there is only one school in the UK specifically for autistic girls.


Our results show that in almost 60% of cases schools were not supportive. 


Yes – 59%

No – 41%


Comments : 

These comments have been redacted but are verbatim. They reflect the individual views and experiences of members 


I applied by myself and it was agreed


Hi. The school said we had no chance so I did it myself (and a plan is being issued) although once I applied the school did have to complete a report. I am not sure they have the option to refuse to do that do they where there’s a parental application? So I’m not sure how to answer on the yes or no if you don’t mind clarifying? Thank you 

And I felt the report painted a rosier picture which was heavily relied upon by the LA EP. We were rejected a plan but LA conceded 2 weeks before tribunal.


the school saying no chance was them not supporting. They have filled out paperwork and have painted a rosier picture I would say the didn’t support you.


They didnt but didnt put enough in it and it was thrown out more than once


My daughter has an EHCP for something else, but LA and school won't change primary need without diagnosis


I did it myself and it went straight through


Primary gave her loads of support with Interventions because she was only making very little progress but wouldn’t take it any further as she was making progress albeit slow


We’ve had to request

But they were very very slow as in over a year


I only got a EHCP because secondary school insisted it would be needed, primary school kept fobbing me off saying my daughter wouldn't get it then in yr 6 I insisted they helped to apply but we were refused an assessment by the council.


Thank god secondary had more success in getting it.


Primary school did put alot of support in but I had to go to occupational therapy myself to get a assessment of what could help my daughter's needs, My daughter was diagnosed with ADHD at 5yrs old and when I applied for an ASD assessment at 9yrs old, all I got from SENCO was "it'll just be a label" and I could feel the eyes roll.


Her headmistress frowned on the comment in our meeting with OTs and the school when the OTs said she'd need to use a laptop, tablet or PC to do some of her work.


Again another school who supposedly reckoned they knew how to deal with ASD and ADHD. Some teachers were fantastic but the headmistress was sorry to say it a very ignorant pig of a person.


Initially yes, until diagnosis, then fully supported alongside secondary.

It wasn’t an absolute refusal, more an extreme reluctance as the SENCO hadn’t done one before and didn’t know how to do it. It was felt it wouldn’t help as my daughter didn’t want in class support so I was left unsure whether it would have been beneficial.


In Scotland we don’t have an EHCP.


Applied myself...got turned down...about to get the school to apply...we now have a diagnosis of ASC.


Initially yes at Juniors despite repeated requests then we got ASD diagnosis. Still failed to put any support in place. Lied about rules for EHCP with Someone from LEA at meeting. So we did it ourself. This particular LEA failed their OFSTED on SEN provision. Schools paperwork was very poor so i complained to Head again & printed off numerous emails to SENCO & letters from Professionals again(which they already had) & pointed out their legal requirement from IPSEA. Head rewrote their paperwork & went to Senior School transition meeting where she was very embarrassed & shown up by the amazing Senior School Senco who basically asked her what the school had done & her answers were very little!


She apologised but it has meant that transition & year 6 was so much harder. Luckily the Senior School is very Supportive & we now have EHCP, fully supported by Senior School.


They applied for the Statement


No, it was their idea and they worked hard to get it. However it now means she's leaving the school which isn't what I wanted one for.

Up until the last few weeks, I was told we wouldn't get one because she's too clever. But since being in her new year 2 class , the teacher recognises that she's not coping socially and emotionally and is encouraging me to apply to assess for one.


Yes. Initiated myself.


I ticked, ‘no’ because by the time we applied, dd had her diagnosis (age 12). However we had asked about this before diagnosis of ASC, having got Irlen and dyslexia diagnosed about six months earlier. The SENCOs response to this was to state that the school hadn’t the resources to meet the provisions of those in the school who already had EHCPs, and that we wouldn’t get an EHCP for dyslexia.


They said that the school had been knocked back 3 times in a matter of weeks ..and it would be better for me to apply myself ..now they are finally in board after some drastic behaviours


We were told a diagnosis would make no difference and we wouldn’t get one. An application was submitted within three weeks of diagnosis an application was successfully submitted. When we told senco we were looking at specialist setting she asked if we knew what children in specialist setting looked like!


yes! From being told she’d never get a 1-1 to help with her dyslexia and would be unlikely to get an EHCP, my dd got one detailing special school, full time 1-1 support in special school, and integrated therapeutic help from OTs and SLTs and psychologists/ psychotherapists.


School suggested applying for an EHCP but only after refusing to help earlier and only as a result of 1. exclusion due to violence and 2. because they could refuse to meet need and get rid of us.


yes we have number 2 all done ‘in Hs best interests’ of course smiling assassin technique.


It took a long time though, initially Head with the Ed Psych told us it was pointless and she wouldn’t qualify. New Head and new Ed Psych (in the same school) 2 years down the line we very supportive and we are awaiting outcome by May


Yes and no. There was lack of training/knowledge/understanding in her year 1 class they only knew about boy autism traits. The head was quicker to understand and recognised that girls mask and it would be a long road. Year 2 teacher did her homework when I discussed my concerns with her. The SENDCO looked for other possibilities before completing EHA, this is still being worked on now but it is still me driving it and a fabulous Family worker who is supporting us.


My 13yo primary struggled to do anything because she wasn’t turning tables over or getting violent. Her hands were completely tied with regard to me daughter, I can’t fault the senco she had nowhere to turn, not enough hours to dedicate to her job and no support from outside of school for cases such as my daughter.


Still fighting for my daughters recognition as a kid with problems and not the quiet well behaved child they view her as.


We live in the UAE - whilst didn’t refuse think it’s just more than they are able to help with. Daughter currently not in school.


I answered No because her needs were too great following a breakdown in high school that it could not be denied when I requested a EHCP assessment.   


However, the other side of the coin is primary years - I hadn't asked for one because i didnt know about them and during those years in primary school i was told she was "fine in school" yet I contacted the school a lot about home behaviours, emotional needs, social struggles, arranged a play therapist for her in Y5 who saw her in school and set up a CAF (early help) in Y5. I also contacted the GP and school nurse about reduced eating, sleep issues and emotional dysregulation at home but school told them she is "fine" the medical professioanls did nothing to help. EHCP was never mentioned in primary years. I didnt even meet the SENCo, only the pastoral team. Yet years later I found out it was the SENCo who signs off the CAF paperwork. She didnt attend the meeting! I was the first parent in our primary school to set up a CAF and I did not feel supported, parents often removed their children. I asked for CAMHS involvement twice in primary, but she didn't meet their criteria because she did not show behaviours "in multiple settings" therefore the GP did not make the referral. CAMHS criteria discriminates against those who mask. All of this affected us not having the opportunity to know about and request an EHCP assessment.


My daughter is now in year 7 and none of the schools offered her a ehcp and her new big school has refused to do one xx

Won’t apply themselves but said will support our application should we bite the bullet and do it.


Primary weren’t keen or forthcoming and we were fumbling about trying to work out what was needed for her. They tried to make us start the EHCP process in secondary but we put our foot down and pushed them to start so we got the first term of evidence from primary. 

I've ticked yes although it's not an echp where I live, we have had to fight the school for adequate/ appropriate support which still isn't really meeting her needs

Question

Did your child’s educational settings refuse to support your request to submit an EHCP assessment?

image195

poll 5

Member Comments

This is a very pertinent question at the moment: schools are underfunded and judged on results, attendance and progress. 


A child with additional needs who may have had previous academic success but is struggling, places an enormous burden on schools who cannot demonstrate that they have ‘added value’ to that child. 

Where a child is struggling with their mental health and school is not a safe place, parents who are supporting them at home face critical judgement with regard to attendance. 


In many cases, schools actively encourage parents to remove their children to be unselectively home educated.


No -35% - school did not attempt to off roll our child 

Yes -65% - school DID attempt to off roll our child 


Comments 

All of these comments have been redacted, but are captured verbatim and reflect the experiences of individual members 


Secondary did everything possible to keep her in roll. 3 years in daily isolation for not warring correct uniform tho!


Since she left the school has turned their SEN department and loads of processes in place to help girls like my daughter. Great school for SEN.

As soon as they confirmed her diagnosis she was gone, said they couldnt meet needs


Not yet!


No, but we were bullied out and reminded we were welcome to home school.


First secondary school did absolute minimum to support - she wasn’t even in the SEN registered despite 3 x hospitalisation. Gave her a get out of class card, but didn’t support in any way. Didn’t acknowledge difficulties, didn’t do EHCP until forced to by local team. Never assessed need. She wasn’t off rolled, but when we said we wanted a managed move they were all over it like a rash and in full support. I haven’t answered yes or no, but our experience was an almost yes

Not sure what to answer.


I'm home schooling now because of school's misunderstanding of DD's needs I guess. They thought she was coping and planned to reduce support. I knew she definitely wasn't coping, as things were. So, less support would have left DD very miserable, to an extent we as a family couldn't have dealt with it.


So, not actively off-rolled, not with intent, but we did leave because of proposed TA support changes.


I had no choice but to deregister (not off rolled) and home educate, eldest mental health and wellbeing were far more important than any education she had been getting which wasn't much.


I think the school were never intending to give our daughter the support she needed and hoped we would leave. 


Comments from the head such as 'we know nothing about autism here. We are probably going to continue making mistakes' were frequent. I think senior staff let the newly qualified teacher ignore the professional guidance and pursue her own plan for our daughter ('independent and full time by year one!!') knowing it would push us out.


Excluded her by sending her to another school for children with health or behaviour issues. Put her on dual register so it didn’t count as “exclusion”. It is an Academy that boasts that they never exclude any children but I know this happened to many other kids. We fought and eventually got her back but she didn’t get any support and we sent her to a different school.


As soon as the school had responded in the EHCP consultation phase, to say they could not meet her needs, they telephoned me to tell me not to send my daughter in. It was three months after that before the LA named a school on their final draft of the EHCP. She did not attend *that* school because it was inappropriate. In all my dd was ‘off roll’, belonging to no school and having no provision at all (I did not have the resources to home educate, and my child was in a very low mental state, felt rejected) - was off school for most of year 9 until her Tribunal agreed special Ed began. A total failure to assess and meet her needs in yrs 7 and 8 had resulted in effective exclusion from learning and from school, because attempting to attend a mainstream environment was so stressful that she was repeatedly physically ill.


After 9 days at one school we were called and asked not to bring her back.

I was told they couldn't help my daughter anymore as i was starving her emotionally at home. A week later her severely autistic diagnosis came through. Expelled immediately! NICE


Took away support. Also had a 10 day exclusion for being violent towards Head followed by illegal part time timetable for about a year. I'm sure they hoped we'd go away. Also once EHCP came through then said they couldn't meet need, this was maybe 4 months before the end of primary. Only because if inclusions team suggesting the school had a "moral obligation to keep Emma on the roll" that were weren't sent packing.

Head mistress tried a few times to get us out. First suggestion was a smaller school, then she asked if we could afford to take her to a private school. When our girl stopped attending the head tried to get us to take her off roll as we'd get more services. I didn't believe her and I was right. G was off school for 2 years and we had a tutor at home for over a year before we managed to get a suitable SEN school. She's still part time but building hours up again.


"She's fine in school. It's your parenting" .... well actually no its your incompetence at being able to help her!

that's exactly what I got told


Current school are asking me ‘have you tried such and such place...?’ ‘We are not a specialist school’ and if my daughter has a difficult day the ask her not to come in the next day as ‘she and teachers need a rest ‘


My daughter is still in “school “ for 1 hour a day and has wonderful tutoring Which can only focus on maths and English.


No. But I feel my girl was sidelined for the remaining terms of year 6. She could have been celebrated but sidelining her only reinforced her difference to her peers which left her isolated and ta

Question

Did your child’s educational setting either attempted or has off rolled your child? 

Find out more
image196

poll 6

Member Comments


This question was asked in the context of a lack of understanding of the presentation of autism in girls.
An awareness of the nuances of autism in girls and young women means that many professionals, both in school settings and in health, are not aware of what they are looking for. Diagnostic criteria remain ‘male focussed’ and even experienced clinicians struggle to support the diagnosis of girls and women.
Diagnosis itself is often the only key to adaptions within a school setting, so this gender bias is a huge barrier to keeping young autistic girls and women healthy and supported, and allowing them to achieve their potential.
No diagnosis, or a protracted diagnosis can results in significant mental health harm and loss of education.

These comments below have been redacted but are verbatim. Each one is from a different member.


Absolutely. Primary school had no idea that the quiet, shy, day dreaming girl might be autistic. We had no idea that her meltdowns at home weren’t just exaggerated pre-teen hormones. Knowledge about how autism presents in girls needs to be much more widely promoted.


I can see how different I'm treated with my lil guy going same journey as to with my girls! With him, they bending over to listen, help & support. Taken so seriously but with my girls, I'm basically ignored & not believed . It really shouldn't be like that at all


Definitely. She was 3 when I noticed something wasn't right and asked for help when she was 4 and started school. She got diagnosed at 14!


My son got diagnosed at 3 and a half, 11 months after referral! xx
exactly the same with my daughter


Been assessed for asd twice !! She didn’t tick all the boxes, we are currently awaiting our 3rd assessment for asd !!


Absolutely. She doesn’t fit the autistic boy profile, she’s shy, quiet, sensitive. I was told she lacks self esteem, made to feel i was neurotic, ignored and dismissed by teachers, sencos, school nurses.


Not so much a barrier to diagnosis, as our daughter was on the pathway at age 4, diagnosis at age 5.
But a huge barrier to acceptance of her diagnosis. School would acknowledge she had ASC but not accept that being controlling, severely anxious, 'uncooperative ' 'monopolising of her mother's attention' etc, had anything to do with her autistic response to the school environment. I too was made to feel, and indeed told, that I was anxious and needed to just 'let go'.


I was also made to feel neurotic. When she got her diagnosis at 14, they checked through all her records of appointments with specialists and it was clearly documented that she had communication difficulties from an early age, but not one of the specialists picked up on ASD until I suggested it.


Absolutely, only diagnosed after a 2nd opinion! School said 'just shy, quiet and sometimes anxious' for 4 years!


I ticked no because once my daughter began the assessment her diagnosis was fairly quick (5 months which is much quicker than many families have to wait). However, she was diagnosed at 14/15 and I would say that she wasn’t investigated for autism at a younger age because she is female. I missed all the signs (and they were there from babyhood in retrospect) and I have an older autistic son, so I thought I was knowledgeable about autism! Similarly the schools missed it, despite various fairly obvious signs (again with hindsight) including selective mutism, inability to relate to peers, being put in a ‘social skills’ group more than once, and having anxiety-related meltdowns. (There were many other signs.)


Absolutely...it’s taken NINE YEARS to be listened to!!
Most definitely, it still is difficult even now to get people to take her diagnosis seriously as she doesn’t present in the ‘typical’ way. it took 6 years for us to be taken seriously, I cried the day we were finally referred as somebody was finally actually listening.

The words of the first paediatrician were ...
She’s a girl we cannot do anything until she’s in at least year 8 from school reports she ok so I will discharge her.
Wtf I don’t think so I was straight on at PALS and now diagnosed with Autism.


Yes especially because she was so well behaved in school, model pupil but they didn't believe me when I talked about her behaviour and rituals at home
Yes. But to be fair the system is broken for all children.


Absolutely we fought for 6 years working our way through system year 4 of journey the lead told me she was our difficult middle child and it was our parenting, she then proceeded to tell me about her difficult middle child. This added another two years to our fight and when she was finally diagnosed we were told it was obvious. So 6 years no support and parent blame, years we are still paying the emotional price for.


Still waiting......... on the list. Daughter now 13. Bloody ridiculous


We began asking about her differences (suspecting dyslexia) when she was in yr 1. She had had speech therapy at nursery and in reception. She was repeatedly ill. None of the professionals considered autism until she was 12 and had had appalling yr of illness at secondary school; and only after hospital psychs had exhausted tests to establish first whether it was actually our fault. She was a successful masker at primary school, although had 2 failed placements and was deregistered by us in yr 5 in a bid to improve her physical health. None of the professionals we saw in this time, in education or NHS, recognised any of the pattern of autism. Her special school suggests she would have benefitted from being with them at least 6 years ago.


My other daughter diagnosed by CAMHS at 18 after SENCO dismissed idea sh3 was autistic because “she laughs with her friends”. CAMHS were telling us she ‘just has a lot of traits’ and that as she had now learned to mask, she would ‘be ok’. Dd protested that masking is exhausting. They only diagnosed her after I produced a sheaf of recent articles about characteristics of teenage autistic girls, and reminded them that autism lasts for life and is not relevant only in an educational setting.


Primary school staff didn't have a clue and did not take my concerns about home behaviour seriously. It took a breakdown in high school aged 11 before everyone took notice, they didn't have a choice when faced with such an ill child. This drastic deterioration in mental health meant CAMHS would see her. CAMHS held an extended consultation period with us, at the assessment they seemed very unsure that she is autistic. I had done my own research and presented my knowledge that she did fit the female profile. They agreed, diagnosis given aged 12. She still has not recovered from the breakdown 3 years on. Teachers should have listened to me and CAMHS should have seen her instead of saying she did not fit their criteria of "showing the behaviour in more than one setting". I wonder how many CAMHS professionals have now learned that autistics who mask do not show the behaviours in multiple settings, they often save it for home. Another thing is she is the same as the autistic child who throws the school table in anger, she wants to throw the table but instead she sits there with internalised anger, she hides her emotions until she gets home. Only listening when a child has had a breakdown is inconceivable.
Yes because school staff hardly understood autism never mind girl presentation! But no because of autism assessment team who were knowledgeable and could see PDA traits too.
Absolutely.. primary school staff were not aware about how girls present or mask at all! They only knew the stereotypical male signs, even the Sen lead, I had to provide them with this information.


gp was not very knowledgeable but did listen.


Camhs and Ed psych said it would be difficult because she’s a girl and girls hide the difficulties/traits better.


My daughter masked in school and in camhs appointments.
Been on waiting list for two years and one month and it took three years to get on the list. Started fighting in Nursery age 3 and she’s now 8.


1) Most (not all) Girls have a tendency to present internally when out of them home, they try hard to mimic neurological behaviour and fit in. I understand why it’s harder sometimes to spot.
2)they also have special interests that are somethings similar to an average girls, e.g dolls. It’s just your daughter have 500 dolls and categorises/plays with them in a different way so people dismiss you.
3) the diagnostic tool ADOS that is most commonly used is flawed and outdated. It’s based on research of more male external type presentations of autism and therefore sets most girls up to fail.


The words of a paediatrician three weeks ago “it’s impossible to hide autism, if you have it everyone would clearly know”
Really??? Has he/she not heard of masking? Jesus wept!
I was so so shocked. Obviously I gave him a lesson he wasn’t expecting


Well done! I had to do that with my son's science teacher (regarding stimming). He was very apologetic afterwards!
Go you!


We were told by Camhs my daughter presents as a typical girl on the spectrum but the SCAT team would not pick her up to do the assessment because she masked in school.


Ye because my daughter is it showing bad behaviour in school they don’t see anything and then blows at home where my boy lashed out in school


I suspected something last year with my daughter and everyone said no, she is now 6 in a new school and even though this teacher first said she’ll mature and grow out of it I’ve pushed and she is recognising a few traits in school. Schools support is paramount for us at home.


EHA is being filled out but having trouble with 3 rounds of APDR as it’s not measurable she is fine academically! Wears ear defenders now in class for noisy work but her work wasn’t affected, home life was!


In her case, no. My son was diagnosed just before his 11th birthday. He has more obvious, physical signs of autism. He is a classic case of "Asperger's" but it still took years of banging our heads against the wall trying to get help. My daughter is more PDA and has more learning issues. She had a severe speech and language delay. We did keep asking for answers but all those who were telling me that my son had autism (friends and such) didn't think the same for my daughter. We were looking into Auditory Processing Disorder to explain my daughter's difficulties when her paediatrician referred her to be assessed for autism. The school thought I was being a neurotic mother (they had that impression from when I was trying to get help for my son). However, once we got to CAMHS, I cannot fault the assessment process. She had just turned 9 when she was diagnosed. I feel, in a way, I had more trouble with my son than I did with my daughter. The professionals did not want to know when it came to my son. With my daughter, I do feel that someone should have helped us sooner, because we had been asking questions for some time, but we didn't know which questions to ask. We were focused on learning and autism didn't occur to us. I just wish we had known the right questions to ask earlier. Also, her behaviour has gotten worse over time. She used to be so quiet. She didn't have the terrible two's, she had the terrible three's. Her maturity levels have lagged so that it is more pronounced now than it was when she was younger. PDA doesn't always look like autism so others just thought she was being awkward and manipulative. Anyway, I guess I am saying that my son showed obvious signs of autism but they didn't assess. My daughter did not show obvious signs so no one knew to assess (except SALT, who really should have picked it up). Does this make sense?


School services, yes. But diagnosis? No. Insurance was our only barrier.


Took 10 years for my 13 yr old daughter to be dx.


Same as my granddaughter. She was 16,so most of school and college years were lost. Now 18 and is lost to us as had no help and is very angry and just can't cope with life. Heartbroken Nan .
why am I not shocked at the amount of yes votes :(


when look at tht poll its shows you the system is failing girls and it's so broken.


Not yet.. home educating her on the other hand nobody wants to know!


My daughter has had every single sign that would usually make them send a boy straight for assessment.


She was a very difficult baby and cried ALL THE TIME over really weird things or over nothing. It was impossible to feed her and impossible to get her to keep things down. She had extremely bad reflux.


When she was slightly older (from about eighteen months but we were worried from about six months) they started to worry that she was deaf because of how unresponsive she was. She had a hearing test and she was still not as responsive as she should have been so they suggested partial hearing loss.
When she was slightly older again, after she’d been sent to a speech therapist (she still doesn’t speak right! One doctor last year asked me if her first language was something other than English because she’s so difficult to understand however her actual vocabulary is very wide and varied because she has an awesome mother and they use that as an excuse to say her speech is fine when it clearly isn’t! Speech and vocabulary aren’t the same bloody thing!) they sent her back to the hearing people for further testing and they decided that, actually, there was nothing wrong with Julia’s ears and her hearing was completely fine. The issue was not her ears.
Was she referred after this? Nope. I asked what, then, was causing her bad speech and lack of communication and responses and was told it was obviously nothing and she’d grow out of it. I didn’t know better at that time.
While all this was going on, she’s been violent to the point of breaking my furniture, breaking toys, being violent towards herself and others (my little sister, who was our babysitter at the time, is covered in scars from her) and herself (she’s been self harming since she was TWO!) and is still, at the ripe old age of nine, incontinent and has been seen by the incontinence doctor who has discharged her saying there is no physical reason for her incontinence (which we already figured but are glad he agreed with us).
She has never slept. In all her nine years. Not one single full night. She is now on melatonin, she’s only been on it since Christmas because that’s how long it’s taken for us to be listened to on even this small thing. (PFFT! SMALL?!)
The melatonin worked for two nights and hasn’t worked since. It still takes an average of four hours a night to get her to sleep. On the nights it did work it took two and a half.


I have a nine year old, self harming, incontinent, with odd speech who doesn’t sleep and can’t even let us brush her hair so she walks around looking like a scruffy ginger scarecrow 24/7 and no one will help us. We’re on no waiting lists, despite being told we’d be put on one by the school TWICE and no one is listening to us. She gets suicidal sometimes. My baby. My little nine year old. She tells me she wishes she were dead and she feels like she’s “going mental”. And still, they do nothing. We get no support. Zero.


I’ve had my MP involved and still; nothing.


The last paediatrician we saw told us “well she has the symptoms but I’m not going to put her on the pathway. She’s a girl.” He said this in front myself, a female employee (I don’t think she was a nurse, can’t remember why she was there), my husband, my mother and my older daughter. When I tried to make a complaint on more than one occasion I was called a liar, every time.
I genuinely don’t know what else I can do. Maybe I should start trying to beat the autism out of her so the social services get involved and start doing something?! Seems round here the only people who get help are the ones whose parents are useless!]


I feel strongly that ASC in girls presents VERY differently from boys. Many many professionals are not aware of this but what makes it much harder is places like schools and nurseries and GP’s ignorance. I think this should be the strategy- raising awareness publicly. FIGs are doing an Amazing job. I was slightly appeased recently when I was given new additional forms from CAMHS related to girls on the spectrum and they were spot on. Very detailed. I also feel there is a problem around aspbergers as it’s still used and referred to all the time by professionals etc but again is not describing a High functioning autistic girl. We need more schools suitable for high functioning autistic girls (and probably boys...)


The consultants words were that an untrained eye tends to miss the subtleties of female asd as they cannot see through the mask
yes so the ‘eyes need training’ then!!
absolutely!


I also think that if we ‘parents, professionals, schools’ begin to allow and teach our girls to ‘be who they are’ then the subtleties aren’t as subtle! My daughter is way more herself as she’s allowed herself to drop the mask and so people can see the ASC more. My mission is to celebrate my daughter’s personality and to encourage everyone around her to do the same. It’s not easy though is it!!


My daughter showed clear signs at age 3 years but not presenting like the boys in the asd services, they put up a huge brick wall.


At age almost 10 we finally got a diagnosis but the lack of support etc has had a huge impact on her. Looking back at all the evidence, I can’t understand why the professionals couldn’t see asd and just pushed her away from services. Particularly as her older sister has a diagnosis.


we were in a similar situation.... Daughter was diagnosed four weeks ago (age 14)... her older brother was diagnosed age 9... I’m certain my partner is undiagnosed Aspie too... I just wish parents were listened to.xx
It’s not her gender that’s been the barrier, it’s her presentation. Boys with similar presentations face the same issues.


I would agree with [previous comment] it isnt the gender of the child as much as the ignorance of the practitioner. Everything still focuses on the very early research which was relating to young learning disabled boys, any slight deviation from this and very few are willing to consider diagnosis, unfortunately.


My youngest daughter was non verbal until aged 3yrs. She demonstrated repetitive interests, massive sensory seeker and sensitivity, had meltdowns of gigantic proportion and was socially isolated. Discharged from Paeds aged 5ys with Isolated Language Delay !!!!!!! Diagnosed with ASD and ADD aged 8yrs. Still trying to get an EHCP ..... now has Mental Health issues as well.


Yes. F was not disruptive in class so I feel she was just left to struggle. Private and nhs diagnosis did not discriminate tho. I hear it still now when I talk about my girl - ‘oh it’s rare for girls isn’t it?’ Now I know what I know, it’s shocking to hear.

Question

Do you feel your daughter’s gender has been a barrier to diagnosis?

One families experience

  

This is shared with permission from submitter.


Well here goes.... Our ongoing saga summarises just what is wrong with the system. Please take the time to read our story.

15-year-old daughter (diagnosed at 14). The usual decline after puberty. Very bright and top of the class at primary school. Loads of anxiety and friendship issues all her life. Secondary school was a massive challenge from day 1. Self-harm and school refusal from year 9. CAMHS support started but was woefully inadequate. Multiple trips to A&E.
Sent home with complex and suicidal girl time after time. Suicide attempts increased. She eventually absconded from CAMHS worker when out for a coffee (that was their 'support'). She can't verbalise her feelings or deal with questions, so ended up threatening to jump off the Marina wall.
Sectioned by Police. In S136 'suite' (think police cell) in adult mental hospital Mill view for 3 days. CAMHS lifted the section when she had not eaten for 3 days and she was refusing the meds she was prescribed that day (we had been asking for them for months) and argued with social care, in front of us, as to whose 'responsibility' she was. We desperately asked for a hospital bed. Told there were none (a lie).
They put suicidal daughter in foster care miles away in Hastings, against our will, on New Year’s Eve 2016. We warned them she would make a serious attempt, as she had told us she was on a 'countdown' to die at midnight. We were ignored and sent home.
Basically, had been waiting up for the call we thought we would get, to tell us our daughter was dead. We will never get over that New Year’s Eve night. We had no calls and when we finally got through to someone on New Year’s Day at 11 am, we were told she tried to ligature at midnight and was rushed to hospital 11 hours previously. We went straight there, and they were excellent. She was sectioned again, and a bed was found in a Priory Hospital CAMHS ward, 80 minutes’ drive away.
She finally got her ASC with demand avoidance diagnosis 4 months later. Sadly, the mental health hospitals are not geared up to meet the needs of ASC girls. 15 months on we have excellent reports detailing her needs and finally after a fight, an EHCP, but here is the irony.

Because her primary needs are ASC and the CAMHS unit were exacerbating her anxiety, and had been ordered by NHS England to put proper plans and care in place, instead, last week they sent her, without notice, to a Psychiatric intensive care unit, 300 miles away at 3 am (emotionally she is like a toddler, so this was an absolutely terrifying 6 hour drive without her parents) and lied on the admission forms about the ASC.
The consultant there was furious and said a PICU is no place for a child with ASC. He said being there would make her worse. We went up acted stayed in a B&B for 3 days until we could bring her home. She is highly medicated and needs appropriate ASC therapy (none received to date) and place that can meet her needs. Within 10 hours of getting home she had taken an overdose as she cannot cope with change angst is so traumatised and feels unsafe out of hospital Back in A&E they cannot cope with adolescents and sent her home again. Now we have formal ASC reports the CCG seem unable to find and place because they insist on looking at hospitals. We are providing 24/7 care and set the moment and we're promised a nurse to help until a bed is found, but then this was withdrawn because they were worried about insurance! We need and appropriate ASC care home but because we're don't have a social worker (the CCG have been chasing this for months) we are back to the services arguing about who will pay. I have not been able to work for a week now and we are just trying to keep our daughter safe.
Things must change. We made a complaint to CAMHS a year ago and to date have had no response. We agree going to our MP and will talk about FIGS and the unacceptable experiences around the country.