Note – this is not applicable to all individuals with autism, nor all schools!!!
Regarding autism and whether it is possible for children to display different behaviours at home compared to school – this is something that over the years probably hundreds of parents have asked me about. So often the message is a similar (and familiar) one – that at school the child ‘behaves’ well, while at home things can get…well, kinda out of hand! This results in huge frustration for parents who cannot seem to get school to accept that behaviour at home is so different to that at school, with school insisting that ‘everything must be ok’ [NB I am not suggesting that all schools respond in this way, many will be highly supportive of the family).
It is very clearly documented (by parents and professionals, as well as organisations such as the NAS) that many children with autism (though not all) will display considerably different behaviours in different settings. This can be as a result of a wide range of reasons, from central coherence abilities, to environmental factors, to differing levels of stress in different situations. A reasonably common pattern in terms of school/home behaviour is that the child may appear to present with no problems at school, but at home there can be major issues in terms of behaviour. Often, the result is that either school simply do not believe that the child they see at school can be displaying the reported behaviours at home, or that school erroneously believe that because the behaviours are only seen at home then the causing factors for the behaviour must also be situated there. This is not always the case, and it is of imperative importance that all parties involved recognise the serious nature of high levels of distress, and recognise that all aspects of the individual’s life may be a contributory factor towards high arousal – which, in turn, may manifest in behavioural issues. This can lead well into adulthood – for example I know several people whose behaviour at work appears to demonstrate no problem at all, whereas the reality is that they are in high states of anxiety and stress, to the point of self injury at home, and, in some cases, anxiety and depression. This demonstrates just how important it is that all concerned recognise this reasonably common autism related pattern as early as possible, in order to support the child (or adult) well. Just because a child has the ability to ‘mask’ their autism at school does not mean that they are not greatly impacted by their autism on a daily basis. In fact, it is often this ‘masking’ behaviour (acting, or copying other children) that lead school to believe that there is no problem at school; however, it may be that the child is behaving in this way precisely because they are stressed and have discovered that by copying others they can ‘hide’ their very real problems. When at home, all of the emotional distress may then be released in what is seen as a safe environment. The irony is that in some cases, it is the stress and anxiety experienced at school that subsequently lead to the copying behaviour and subsequent meltdowns at home!
I can relate to this so much. Thanks for posting!
My pleasure
I can relate to this
Thank you Luke. Found this article fascinating so useful and comforting. I am currently waiting for an ASD assessment for my son so this article has helped so much to understand why challenging behaviour just at home and I can now maybe stop beating myself up thinking it must be my fault my parenting skills. Have sent onto my sons father who might just have to make an apologiy to me
School is based on routine. Everything is regimented. They have the same chair in same place, lunch at same time etc.. also there are always adults present to monitor and help regulate behaviour. They don’t have to worry about leaving child unattended to go to the toilet, answer phones, and they don’t have to cook meals which means their full attention is on your child. Home isn’t like that. We don’t have assistants to cook whilst we supervise etc.. and we don’t get breaks in the day, which means we are sometimes doing a 15 HR shift so we may be tired. After 15 hrs of looking after child, we hope they will sleep or it can turn into 20hrs. In my case, once it was 3 days, and nobody helps.
My home is very regimented. I stick to a routine, but sometimes things happen and the routine has to be changed, but I would say that routine is the key. You live your life to a schedule, but have a happier child
I have the same problem my 4yr old is good at school and he can often explode at home, they have just referred him to be assessed for autism.
Also is there anywhere that i could get some sort of safety gate. As he keeps going in the kitchen he turns the cooker on, he will touch the top even though i tell him its hot, he wears hearing aids and has global developmental delay, so it is really hard work, the gates i have now he can open them so i have had to tie them closed with a lace which isn’t safe at all for everyone in the house to have to climb over,
I couldn’t agree more with what you have said. I am having issues with school and it’s so frustrating. My son sees a psychologist who has seen he has sensory issues she feels he has autism from alot of the traits he has he cant handle loud noises at all and hates change to the point he can have the worst melt downs. He can’t even handle walking a different way to school. His referral got rejected from the psychologist because they said school needed to do it. My sons occupational therapist has also tried to refer him but no joy as of yet. I have spoke to school on a number of occasions and just have no luck . He is showing minor signs at school for example when its to loud for him he has shouted at the class and resulted in him knocking chairs over but still no joy with them one of his teachers shared similar concerns but school Senco just isn’t doing anything. As a parent it is not only hard to support my child but its horrible to see how upset he gets and not knowing the best way to calm him . He gets thay frustrated he asks me why won’t school help him. I’m worried about how he is going to be when he is in high school next year.
On PDA Groups it has become very common nationwide that our children with SPD and Autism are unable to cope in certain Environments School is a biggie!
Hi I’d go to your doctors and keep ringing them get appointment with them express your concerns and even speak to the council even your my I had no choice but to talk to all the above as nobody would listen to me and my twins were suffering because school would not help.
This is my son to a “T” been having real issues at home but the school keep saying no problem here etc etc, asked them for a referral for the doctors and got one finally stating he has no issues etc so the dr’s cant act on it as not enough – soooo frustrating as getting no where. Thanks for the post
Vicky, if your son has no diagnosis, it doesn’t mean that just because the school don’t see the autistic behaviours that he doesn’t warrant a diagnosis. Perhaps video him if possible without him knowing, or audio record a meltdown. Often the behaviour happens outside of the home too, even if not at school. Every child deserves recognition of their difficulties however they behave and I believe most council’s should have an early intervention policy. Do they want a child who ends up a burden on the system later due to lack of support now?
Hi is it possible to ask your opinion on my sons behaviour please?
My son is the same, psychologist said he is fine st school and basically say i am allowing his behaviour at home or it isnt as bad as i say or not happening at all, all because he is fine at school, take the routine away from him and that’s when it starts, school holidays are the worst x
Why don’t parents get believed – why would you make it up???!!!
I’m so glad I’m not the only one going through this. My Daughter sees CAMHS but masks it to her worker there aswell. It’s so frustrating! It’s took us 2 years to get her seen and I now feel that she will slip under the net due to her masking. I’m concerned about her going to senior school as I know she wont cope.
My grandson was recently diagnosed with ASD, the last sessions of CAMHS ended with him being dismissed as he didnt speak or make eye contact with the councilor so they felt they couldnt help him!
Same here Yvonne. I suspect my son didn’t open up at his sessions with CAHMS. They sent him away after about 4 sessions saying it’s just normal teenager behaviour and to accept that we all have our quirky little ways! After recently revisiting CAHMS have had any apology and told to put forward for an assessment as they think my son may have ASD.
Hi vicky hope you don’t mind me contacting you, but have you managed to get a referral yet? I have Been trying for three years and so frustrated and exhausted as my son can be very aggressive at home towards siblings, wondered if you have any tips?
Hi I’m looking for some advice I’ve been waiting nearly three years for people to listen to me my daughters kicks off everywhere apart from nursery she’s scared of noises tries to hurt herself and others shakes her hands when angry and still gotta wait till October for an assessment to be done??
Hi Em, vickys post is very similar to my experience, I went to drs for referral but they came back to me saying they wouldn’t see me as there was no issues at school (he behaves at school, but has poor concentration and is bottom of the class for Most subjects, has also been given 1-1 with addistantas and been in the nurture groups to help him socialise in a smaller group). We were told it was obviously a parenting problem and classes might help with this . We have since moved to Northern Ireland and the move escalated my 12 year olds behaviour, I went to the drs over here and we were finally referred to Cahms and recently had an autism assessment 3 days ago.. still waiting in the results. Keep fighting to be seen even if it’s through your own go rather than a School referral.
flnny my oldest and youngest both have autism so I know how you feel. your the parent so you know your child the best stay strong and if you don’t get the answer you want fight it. I also wanted to say autistic kids don’t like change so moving house is a big deal to them. just try get bk into a routine asap. my oldest didn’t get diagnosed till she was an adult and I moved all the time I wish I knew about autism bk then. we just thought we had a brat basically. I feel bad now but I cant do anything about it. you know best so fight to get the help your child needs.
Hi what happened during the autism assessment we are still on the waiting list my son has been waiting over a year now and they say it could be much longer I just don’t know how much longer we can wait it’s so upsetting coz he mask all his behaviour at school does anyone know if during the assessment you can show video evidence as I have videos of his meltdowns etc i hate videoing it breaks my heart but because he’s so good at masking I’m afraid he won’t get a diagnosis and we won’t get taken seriously any help on what happens during assessment would be great as I’m just so scared of what will happen if we don’t get a diagnosis we’ve been asking for help since he was 2 and it scares me about his future if we don’t get any I love him so mich and all this is so hard I wish we didn’t have to wait so long
Hiya sorry to jump in but this is my son 2, he is good at school all though quite and keeps him self to him self he has learning disabilities so has an echp plan I’ve been telling them since year 6 needs checking he is now in yr 7 and only now the school nurse is getting involved as his refusing to go to school now and I’ve had him to the doctors the doctors confirmed he has aniexty but can’t do owt until he sees the school nurse
hi we are having the same problem with my grandson.
we have been to camhs afyer a very long wait but he has been assessed at school with no issues but at home its a really different story.he is angry can be very aggressive.
Constantly repeating himself wont take no for an answer or listens.
we have been basically been told by camhs then he isnt autistic or has adhd and they cant give us any help .
it can be mentally draining most days with him.
there is definately something wrong
are they going to wait until years down the line when the situation has got worse before they listen
he can be like jeckle and hyde.
Hi I can relate to everything said here. My son is eleven. Private diagnosis at 7 as terrible meltdowns at school. Add on the years hes very well behaved at school and no issue’s. He is just quiet. Keeps to himself alot. At home is madness. Rude. Disrespectful. , wont lisen . Shouts, destructive and so moody. Ive done consequences. Patience and calm with him. Talk to him when hes calm, egnore alot now, but he dosent seem care what he .does. Hes very consious of homself out of home behaving and quiet. Hard get anyone believe he can be acting like this.
Iam having the same problem my little girl fab at school but gt behaviour problems at home..
We are grandparents raising an autistic grandchild the school says he is the best student ever but at home he has meltdowns at 4 o’clock in the morning where he bites and hits and breaks things he is eight years old I don’t want to lose him I wish someone could help me I have tried everything routine and everything that I’m told To do he does well on the bus and very well in school is there anyone that can help
Hi
I’m a grandparent of a 4 year old undiagnosed with Aspergers. We too have a fight on our hands. She is (ok in school now because we went into school and strategies were put in place to help her) make an appointment to see the head and teacher. Write down all the behaviours you are seeing at home…..which I might add are due to him focusing hard at school…..which when in his safe place will release all his emotions. They should know this….especially the SENCO. If they won’t do anything write to the governors of the school. Go to your GP and ask for CAMHS referral. If they assess and say no then go to appeal. (I worked for 16 years with many children on the spectrum but also those that had been missed ….and am only now seeing it from a parental side. I feel for u all. Hope this helps.
We call it ‘masking ‘at school but we the Parents get the ‘payback’ when they come home!
My daughter rarely displays her home behaviours at school. She can also keep her control in other places too. Thanks for the confirmation xxxx
This is my daughter too, she is 12 and has a dx of ASD, she masks all the time at school and then falls apart at home, last year she had roughly 15 days of complete school refusal and made no progress for the whole yr. We have been fighting our local authority to get a statement for her for 12 months and are just getting ready to go back to tribunal for the 2nd time! It is soul destroying to see her struggling and not be able to help her.
I often wish she would swear at someone or throw a chair!! At least then she would get some help! 🙁
Thankyou for publishing your thoughts and with your permission I would like to include them in my tribunal bundle.
i feel the same with school not believing us
It does seem a very common problem. It seems the system needs to change.
Awesome article.
Good day! I could have sworn I’ve been to this website before but
after browsing through some of the post I realized it’s new to me.
Anyways, I’m definitely happy I found it and I’ll be book-marking and checking back frequently!
Hi i have the same problem and school dont always support you
The mew EHC plans are even harder to get. Most autistic children who suffer quietly in school won’t even get an assessment, as the schools won’t support it unless it suits th em!
EHCPs should be on the same basis as statements, according to the official sources.
Statements were for a range of difficulties, including emotional and social as well as behavioural because all those things affect access to education.
Don’t be afraid to challenge the LA.
You have just described my son! However school have labeled us as “parenting problems” and reported us to Social Services. It has been a challenging year as now not only am I caring for a teenage boy with ASD and ADHD going through his GCSE’s. But having to meet social workers go to CAF meetings too! He is stressed about his exams but masks it at school and explodes violently at home.
Disgusting, sadly you are not the first. Please see my FB page https://www.facebook.com/PlanetOughtism (pinned post about false accusations against autism families) and contact Jan Loxley Blount at Parents Protecting Children https://www.facebook.com/PPPC.UK?fref=pb&hc_location=profile_browser. She has contacts and collates evidence about this issue.
My son behaves similarly he has an Asperger diagnosis since he was 9 he behaves well in school quiet attentive – works to fit in
Doesn’t want people to know and masks all the time
He believes he hasn’t got it
But lives in his bedroom and spends as much time as he can gaming where he is interactive
He explodes often and terrifies the family when he does
Yet he is a wonderful person usually
Any exam situ causes this explosion
Any situ he emotionally can not deal with
It is difficult to avoid medicating this but do not want him to be doped
Always so very sorry until the next time he can’t help it
So similar to an abusive partner and yet I know he genuinely can not help this so am on line searching for ways to get him to seek out handling
So true Luke and as I say, the blame culture from professionals means that:
(1) if the child misbehaves at school, the cause must be from parenting/home life;
(2) if the child misbehaves at home, the cause must be from parenting/home life.
They can’t have it both ways!! if the behaviour at school is difficult and they blame the parents, then by default they would take responsibility if the behaviour is good at school but difficult at home. Professionals’ attitudes need to change.
I even had a really great teacher (and nice person) with years of autism experience, tell me to record my daughter’s extreme behaviour for her to see, because she was good at school. This was despite me also copying a professional account of her very difficult behaviour during a research exercise away from the home.
There is this incredulity that if someone doesn’t see it themselves they can’t marry the description of the child being aggressive/meltdowns/violent with the inhibited and anxiously compliant child they see at school. This is also very often the case when the child is a girl.
My nearly 10yr old son sounds exactly like this ive spoken to his teachers about his behaviour at home but they dont see it at school, he had referral to camhs and was tested for adhd i done the connors form mine scored high up and surprise surprise the schools 1 was opposite apart from learning which was border line and because he behaved in clinic they couldnt diagnose anything but they said its obvious he needed routine and myself and school were to do visual timetables in which the school said he dont need 1, his on an iep and has been since reception class. His on melatonin at home otherwise he doesnt sleep its so frustrating
Sarah mcinnes, I have loads of information about masked ADHD as my daughter has this on top of her autism too and the NHS won’t diagnose her. I hope this helps:
http://www.nice.org.uk/guidance/cg128/evidence/cg128-autism-in-children-and-young-people-full-guideline2
“The pooled prevalence in children with ASD for the different conditions was:
ADHD: 45% (95% CI 24, 67)”
The NICE Guidance does not state that difficulties must be present at school (or even in clinical settings), but:
https://www.nice.org.uk/guidance/cg72
“For a diagnosis of ADHD, symptoms of hyperactivity/impulsivity and/or inattention should:
* be pervasive, occurring in two or more important settings including social, familial, educational and/or occupational settings.”
Note that it does not say one of those settings has to be school. So it could be socially, at clubs, at appointments, visiting other family members, appointments etc.
http://www.childmind.org/en/posts/ask-an-expert/2014-2-17-kids-adhd-great-behavior-school-difficult-home
“It’s very common for kids with ADHD to behave better in one setting or another, whether that is behaving well at home and terrible at school or vice versa. Oftentimes, this is because of a difference in the home and school environments.”
Ability to Focus to the point of hyperfocus in ADHD
http://www.additudemag.com/adhd/article/612.html
“High distractibility – in children with ADHD who are unable to stay focused on a classroom lecture or in adults with ADD who never get around to doing their paperwork – is a key ADHD symptom and diagnosis criterion. What you might not know about ADHD is that there’s another side: the tendency for children and adults with attention deficit disorder to focus very intently on things that do interest them. At times, the focus is so strong that they become oblivious to the world around them. For children, the object of “hyperfocus” might be playing a video game or watching TV. For adults, it might be shopping or surfing the Internet. But whatever holds the attention, the result is the same: Unless something or someone interrupts, hours drift by as important tasks and relationships fall by the wayside. Some ADDers, for example, are able to channel their focus on something productive, such as a school- or work-related activity. Others allow themselves to hyperfocus on something as a reward for completing a dull but important task.”
http://www.additudemag.com/adhd/article/1032.html
“Researchers recognize that ADHD doesn’t impair the ability to pay attention, but rather the ability to control what one pays attention to.”
Furthermore, research has found that levels of attention and focus differ between the different ADHD sub-types:
http://ww1.cpa-apc.org/Publications/Archives/CJP/2002/november/schmitz.pdf
“The group with ADHD-HI did not show significant impairment in any neuropsychological measure, compared with the 2 other subtype groups and the control subjects. Thus, the findings from this exploratory study suggesting neuropsychological deficits only in ADHD subtypes where inattention is significantly present concur with studies that have demonstrated more academic impairments in subjects with ADHD-I and ADHD-C, but not in subjects with ADHD-HI (18,25,26,50). It therefore seems that the hyperactive dimension of symptoms is not linked to significant cognitive problems. The performance of the ADHD-I group on the ST supports Barkley’s model for ADHD, suggesting that inattention in this ADHD type may be associated with more specific deficits of selective attention and that inattention may be qualitatively different in ADHD-C,”
http://adhd-edu.be/Web/index.php?toPage=MjI= (3/5 on this list apply to our daughter)
“Children and adolescents with masked AD/HD include the following:
* Boys with inattentive type AD/HD.
* Girls with all types of AD/HD.
* Boys and girls with borderline AD/HD and another condition or conditions.
* Girls and boys with a learning disability and/or another condition on the autistic spectrum who also have AD/HD.
* Gifted girls and boys with AD/HD.”
https://spectrumnews.org/news/clinical-acumen-key-in-discerning-autism-attention-deficit/
I’m still fighting for my 12 year old son,they didn’t believe me at school and even the pediatrician doubted me ,when he had his mda low and behold they wouldn’t give him a diagnosis, he’s started at high school now and they’ve helped me and him more than you can imagine, my son talks inappropriate to people,he hates loud noises,will not brush his teeth hates his nails cut,walks on his tiptoes and he can have screaming temper tantrums which he can lash out, I feel like I’m just banging my head on a brick wall, I’m so scared and anxious about him all the time,its making me very sad and I need to know what is wrong with my beautiful boy
My ds was diagnosed with asd last week I’ve had a meeting with the school but they keep saying his teacher has no problems. She has been with him 2 years now because his behaviour in reception was so bad he still has the occasional melt down at school but no where near as bad…. but every morning and after school is behaviour is awful punching swearing and even running out the house most nights I sit in tears feeling like a awful parent but it was so refreshing reading this and knowing I’m not alone in my struggles even some family members keep telling me he’s fine as if the professionals have made a mistake.
I hope you don’t mind, but I found this article of yours a while ago and I have shared it with other families who, like us, were going through difficulties with their child’s school. A copy of it (always credited btw!) went in my son’s EHCP request that we did ourselves..we were one of the few families who got one first go, so, thank you for your help..our boy starts his new special school next week!
Thank you for this.
People commenting here might want to use this as evidence alongside Luke’s information:
http://www.autism.org.uk/about/behaviour/common-questions/school-home.aspx
An EHCP, like a statement of SEN is not only for children who are struggling academically.
Any special need which impacts the education may warrant one, so don’t be fobbed off by LA officials or teachers etc. telling you your child doesn’t qualify.
It really annoys me that there is this parental blame when children are struggling in school and for teachers to report parents to social services just because they don’t see it in front of them is appalling.
Flat affect can be common in autism! Masking is common in autism!
Thank you for this article. It describes my son and I have been getting rather frustrated. The school are saying “average” and “not a problem” where as I am answering questionnaires that say he is undoubtably on the autistic spectrum. Fortunately we took video of my son stimming and the paediatrician is supporting a diagnosis of ASD for him.
Yes – having to take video evidence is something that isn’t uncommon! best of luck…
Thanks for the post!!! We have the same problem with a ten year old grandaughter. The parents are at their wits end so maybe this article will be of some help. Thanks again!
Good luck and I hope it helps!
We have this same thing always pushed in my face my childs fine just becoz he manages at school walking through those doors at home time i can tell just by his face what kinda night we are in for i have noticed things just taking him in. speach and language did an assesment at school yet again fine so i decided to video record at home to take to the pead who was convinced he had asd from the 1st visit so for telling people for months put my son in a different setting you will see how he reacts i showed the pead the videos and how bad things really were and his anxiety and she was totaly shocked from the 1st visit with pead he would cry hiding under tables screaming with his hands on his ears the fire alarm that went off in clinic it was giving him a headache the lights hurt his eyes he wouldnt interact with her nd no eye contact so she phoned speach and language and said to have an appointment out of school in clinic lone behold he reacted the same way he did with the pead and she was shocked how much he cant cope with change he sat in the corner with his nose in the wall and wouldnt entertain toys hiding under chairs the speach lady has agreed and a new report to be done she told me some children on the spectrum manage really well with structure and routine nd thats the case for my boy he holds it in at school until hes at a comfortable place for him to release it so found out after all im not going mad and have done the right thing for my boy keep battling on as its no easy ride but eventually people will listen if you stand your ground.
It doesn’t sound as if you’re mad to me! Well done for sticking up for your son.
Hi! I am having the opposite problem with my 8 year old non verbal asd kiddo. He is kicking his teaching aids and other behaviors that he does not display at home. He is usually a happy go lucky little boy but lately when i drop him at school he starts crying. I dunno what to do?
Hi Rachael – sounds to me like there is a problem at school, or maybe the new term and all the changes that come with it have thrown him?
My grandaughter is good at school but really aggressive to me when home
Kicking trashing swearing running out doors now been put on child protection and diagnosed with adhd but think there is more to it
My son also masks at assessment interviews. He scored above the threshold for ASD (but I hate the term disorder) in the 3Di interview with us parents looking at history and behaviour but when the psychologists and speech therapists assessed him they said they don’t think he has autism. He is very intelligent and a lovely boy who likes to do well at school but we have terrible meltdowns at home when plans change, things don’t go the way he thinks they should or there are sensory issues (too many thunder flies, sun in his eyes, brother sitting too close, brother chewing too loudly etc). He scored highly for anxiety but surely this is part of autism? He does a great jib at school but you can see the tension in him. Very dissatisfied and disappointed that our very famous London hospital doesn’t see that he is masking.
I am having the same problems with my 6 year old son. At school his teachers say there is no problem with his behaviour but at home he is having daily meltdowns. He has been rejected by CAMHS three times because school don’t see that side of him and I am now having to go through parenting strategies again, which didn’t work the first time I had to do them three years ago. It is so frustrating when people don’t believe you then blame you.
Dear Luke,
My son fooled junior school for years. He was fine there and came home to me like a bottle of pop shook all day long. The lid was removed in the car on the way home.
He went to high school Sep 16 and his anxiety levels were so high I couldn’t cope at home and he is now in foster care.
The reason they want to keep him there now is that as he only erupts with me, they don’t want him to come back to me even though we are trying to get him in a special school as ‘it might start again’. So it’s my fault and I’m fighting a full care order. I need as much evidence that some children with autism can hold it together and erupt at home but it isn’t the mother they love that is the problem it’s the challenges in mainstream school. Can you help in any way?
Could it be that the reverse could be masking too?!? More manageable at home for the most part but extremely difficult with many meltdowns at school! Undergoing a second neurodev assessment at the moment as more symptoms have to come light since his initial diagnosis 2/3 years ago.
Thank you for this, it’s very helpful. We also have a (probably PDA) son whose behaviour is ‘unproblematic’ at school and unbearable at home. We don’t live in the UK & here PDA is totally unknown. Slowly, slowly getting through to staff that although he can ‘behave’ at school, the pressure build-up is literally un-liveable-with when it explodes at home. It’s exhausting, as I’m sure it is for all parents on here. Keep going, don’t give up! Keep loving your
kids!!
I’m glad you mentioned the home/work thing. I used to hold it all in and act ‘normal’, wreck when I got home. It all finally got me in my late twenties when I lost my job and lost functioning. Finally diagnosed after My son’s dx aged 34. My daughter (8) is just the same, she was lucky enough to be assessed by Dr Judith Gould and is doing well now. I don’t want her to end up like me.
I have been reading the comments about EHCP’s. I have an aspie girl (8), highly intelligent and very well behaved at school. She has an EHCP with full time 121 plus daily SALT, OT, weekly mindreading and social groups. We did have to go to tribunal, but only over content. Please don’t believe anything an LA or school tells you without checking it out with independents like IPSEA or SOSSEN. To get a statutory assessment for your child, which may lead to an EHCP you have to meet a legal test. The rest is in the Children and Families Act sec36 (8 ). To get an assessment you need to prove that your child MAY have SEN and MAY need extra provision. Note the word may, it’s a low legal threshold. I just wanted to comnent because my daughter is doing so well now she has had her needs identifued and met. I want this for all our girls. I wish I had had support at school, I often wonder what I could have become. Good luck.
I’ve been told EHCPs only come into play if the school can’t show they can meet the child’s needs.
My son (8) was diagnosed with epilepsy last year but is in the CAMHs waiting list for an ADHD assessment although the school have issued ASD concerns to both myself and CAMHs.
I’m not sure about any of it. I’m on my own, he has an older sister who is just amazing (10) yet part of me still thinks what if he’s just naughty because of me? Maybe I’m a bad mum. He displays spectrum behaviour at school and even more at home but never at his Dad’s when he visits one a fortnight?
I have a son who is nearly 12, he was diagnosed at 5 with ASD, moderate learning difficulties. Hes a lovely child, a pleasure to be around – until he goes to school then its a different story, hes hit other pupils, thrown trowels, chairs, inappropriate and rude comments, over-reaction to his own behaviour has lead to him making 3 suicide threats in the past 6 months. What I,m really confused about is why he is (usually) well behaved at home? no meltdowns, does as hes told, I can take him almost anywhere though I do have to keep a very close eye on him or he,d wander off..I,ve read a lot about children on the spectrum kicking off when theyre at home but better behaved at home – really confused as a result and struggling to find any real answers!
Hi Luke,
I am in a rather difficult position because I am a Step-Dad to a 15 y.o. ASPIE boy. The problem is that his behavior at home is deplorable. He shows absolutely no regard for others and constantly acts very immaturely. Somehow, I am expected to laugh atwhat he finds funny (not), constantly pick up after him, constantly remind him to do things, constantly be told I don’t know what I am talking about etc etc etc…His mother agrees that he is not at all a likable boy at home. Whereas outside the house he “turns it on” and is charming. So, everyone thinks I am a dog because I am grumpy about him. They just don’t get it.
Of course, his mother LOVES him and I can’t stand him. I don’t wish him ill and do all I can to be supportive. But I think it is causing irreparable harm on the relationship with my partner. I could go on and on describing this, but I think I am in a no-win position. We have tried professional help, but we seem to stop just at that point where he has to comply with instructions. And you know he know best – not. Any ideas, please
Peter, I must admit your comment actually put tears in my eyes. I have a 6yo ASD boy. My husband is not his father. His father is non existent. He is very verbal but it affects his behavior. I am going to told you what I told my husband. There is absolutely no interference on my end. I allow him to discipline my son without me interfering. If I do not agree, I still do not say anything I wait until the children are not around before I open my mouth. My husband and my children are in a unique situation. My children, all 3 including my ASD child, all picked him and actually asked him to be their dad. Being that they are not his kids, he feels how you feel. Every time they do something wrong it is because of their DNA. That boy cannot help things sometimes. I don’t know the exact situation with you and your wife, but my standpoint is I give him some chances because I know he needs it. My son did not ask to be born this way he should not be mistreated just because he is different. So what if he isn’t your kid. He looks at you like one and loves you like one. Imagine if that was truly your child. I doubt you would be saying that.
My daughter was diagnosed with ADHD when she was 16 she’s is now 26 and has her own daughter. We all struggle my grandaughters behaviour, she is 5. She is sound amazing at school she designed a presentation at my house with pictures and paragraphs and then presented it to us. All off her own back.
But she does things that are hard for us to manage like we go for a family meal, she screams shouts hits us throws things and everyone looks at us. One day she kept hitting me and when my daughter came back she tried to get out the car while it was moving she wound window down as child locks were on, and opened car door by handle out the window. My poor daughter was a wreck of fright horror and doesn’t know how to cope. We took my granddaughter to her GP he’s referred her to a children’s mental health specialist but it could be a few weeks.
Good to see this piece, hopefully more research and evidence will follow too. We have been played down by a consultant paedriatrician and our daughters school ‘senco’ was sympathetic but completely uninterested after an initial meeting. The offer of support seems to hinge on exactly what your article asks – trouble at school, no? Well no help then.
So you’re essentially saying that children with autism can become non aitistic while at school, and “choose” to control their autism. I don’t believe this. True disability doesnt disappear. Autism is a developmental disorder and children can’t suddenly hide autism whenever they choose. And saying they can actually demeans the severity and issues that parents of children with severe autism face.
No. I am not suggesting that in the least – quite the opposite! I absolutely agree autism cannot change – but the presentation (behaviour) of a child can, and does – at huge expense to the child in many cases which is why I think this is such an issue – the child may be massively distressed at school while masking those very problems.
I can relate to this so much, my son currently 5 years old ticks every single box for ADHD & Autism.
Problems first came to light when he started reception in 2016, his behaviour wasn’t good he would hit other children and tell children the most nastiest things as in (he was going to smash there head in with a hammer! ) I have had to deal with constant calls and meetings with the school as well as the behaviours consistent with ADHD.
He has toilet problems where he will literally sit in his own soil and wet, I have had so much stress from school and at home battling this problem. I have to physically restrain him as he will lie and tell me he’s done nothing run away, hit & kick me all because I am trying to change him as I don’t want him sitting in it. When I eventually do change him he stands there laughing at me and even jokes about poo, when he’s out in public he calls people poo this & that anything he’s saying is related to this 🙁
This has been a very long process and has been a constant battle for advice on what to do with him etc.
He is now fine in school most the time with going to the toilet and at home he is just backwards he still runs off, lies kicks me, shouts at me, won’t change himself and still laughs at me when I’m literally trying to clean him up minutes later he will do it again as if its just one big joke. School are not supportive and haven’t been good as in helping me with the problems, it has been aimed at me not being able to parent and the looks and comments I have had from the Head of Reception is not good at all, as long as he’s fine in school they just don’t care what happens at home, he has been labelled as a naughty child since he started Reception.
His behaviour is out of hand, but its quite normal to me. I can’t take him out in public shopping or just to pop out as it ends up being a major disaster, the one thing the school did do was get him assessed by their private Educational Psychologist which helped in some way as they basically put in the report that he is suffering many symptoms that children get the diagnosis of ADHD & Autism (Spectrum Disorder) there are so many things I could sit here and write, I would be here all day.
I am in contact with CAMHS at present trough plenty of chase up’s with my doctor and constantly chasing various people. He had his first assessment in November 2017 and he was then going to referred for ADHD for more assessments to be done, I have had to chase this plenty of times which resulted in me gaining an appointment to explain everything and now they are going to assess him in school and talk to him and then a report will be done which will determine him being referred to the right team for further assessments. I just seem to be banging my head against a brick wall. I have had many tiffs with the school about his behaviour they don’t believe it and when they are explaining my child to me it is a totally different child, it is so exhausting. I have lost my job because of all the problems I had been having to deal with meetings, arrangements, making sure he had spares constantly.
I just feel like I’m fighting a loosing battle 🙁 , I definitely know he has ADHD and some Autism characteristics, but the school are just so against me its unreal, they say hes not playing up in school so we can’t do anything. Every time I ask anything I can see the frustration in the teacher’s face as they don’t know how to deal with what I say most the time. They have just labelled him as a naughty child ever since he started the school there is no help and I’m looked at like I cant control my child, I get told to do parenting courses and am just so stressed out.
Does anyone else seem to believe me or even have similar problems ?
This is my son, he literally explodes as soon as he is home from school. At school he is academically one of the top in his year, they don’t see issues? Although often get aggressive during break times, when they are recorded. Becomes physically aggressive as soon as he is home. If tea not ready by five he becomes uncontrollable. Tried to get him referred through gp but due to lack of evidence keeps getting thrown out. Eha makes me out to be a bad parent, it’s such a joke and unfair.
Hello,
I have an autism Son,
At home, He doesn’t say any words. But when my spouse picks up him at school today, His teacher says He can count from 1 to 5.
This is unbelievable. I just wonder why He doesn’t do that at home, He also behaves very bad at home as well.
My grandson behaves at school at his dads and mine but kicks of at his mums. Dad has him every second weekend and extra days in between sometimes puts him to school and collects him. Has recently had him for two weeks and a sibling was born at beginning of the two weeks, I had week previous where he has been fine. Back at mums kicks off again . Would that fit in to an autistic child . Where he can be okay also at boys brigade and football practice and only displays bad/behaviour/ low self worth with mum.
My daughter is 6 and we have just been to a 3rd assessment with occupational therapy. All through the session my daughter would not listen kept repeatedly touching things after being told not to by both myself & the assessor. Climbing on chairs tables etc. Assessor told me she was a different child to what she had seen in school no problems there according to her. Doesn’t think she has a processing disorder & got the ditinct impression she thinks my daughters problems are down to me. I’ve sat down and cried about it because no one will listen. I’m so frustrated as nothing works. Around supermarkets my daughter bites into raw meat touches everything touches people’s necklaces bags etc. Picks sweets up off the floor and eats them and somehow this is my fault. I’m at a total loss of what to do.
All of these comments I have read with tears. My DS is 9 tomorrow and has been diagnosed with APD. He’s unruly, violent explosive at home to the extent I’m scared of what he may do next. He’s always angry, miserable and depressed and constantly says he wants to die. He will only wear certain clothes as in colours etc and the same with his shoes. His anxiety is through the roof. His language is appalling and does not hear bad language at home. At school he is an angel. I am at my wits end and heartbroken as I don’t know which way to turn the school is not interested and say he doesn’t need an education plan and have ignored GOSH recommendation for an Edulink for his auditory processing disorder and also state that he should sit at the front of the class and still they ignore. Could any of you guys give me some advice as the school are not helping thank you
Hi all
I am waiting for ASDAS assessment for my 3 year old he does not show or display any behaviour at nursery, they just say he has speech delay and will not get Ehcp though I have been telling them how he behaves at home I feel like We not being heard of what we are saying to them at times, also I am concerned when we have assessment they will take report from nursery and it will have a effect when it comes to Diagnoses him .
I can totally relate to this. My experiences are being repeated for a second time round. My first son we knew was adhd amongst other things from a very early age, school brushed our concerns off year after year and we were refused a diagnosis when he was 9 and discharged with no support. Fast forward to secondary school and my son fell apart, just as I predicted he would do. His new school had an amazing senco and our concerns were finally taken seriously. Took until he was 13 to receive diagnosis of ADHD, ODD, dyslexia and a few other things, finally we could access support… or so we thought, but unfortunately because my son was so used to struggling alone he refused to accept such help and with ever deteriorating behaviour he was granted an EHCP earlier this year, now in a SEMH specialist school but he is still out of control. I wonder if we were taken seriously the first time round things would be different for him now. I also have one completely neurotypical child and then a 6 year old girl displaying the same extreme behaviours we saw the first time round, and again she masks at school and my concerns are constantly down played, so far I have been trying for a paediatrician appt for her for two years to no avail. Until they are a problem at school no one cares or listens and we as parents are made to feel like we are the ones at fault. It breaks my heart for my daughter knowing history could repeat.
Hi my 6year old daughter has globle development mental delays and she is good at school but at home she plays up and she gets angry and lashes out when she dase not get her own way. She always plays up every morning and after school when she plays with anther kids she always comes home with attitudes and when find it hard to take her to public places she plays up even in the car we can not get her to sit still she always think it is funny jumping around in the car. She got no fear of heights or danger. I need some advice
OMG I was screaming at the screen this is so my son he’s 9 working reception level he can’t even write his own name properly and they saying he’s fine no problems. No they don’t get them i do. I get the meltdowns the tears and everything else. He doesn’t eat or drink in sch. It took me a year to get him on a my plan. Now am fighting for a EHCP. I’ve been called a overreacting parent. The hospital as Sent letter after letter am going round in circles. Am now at the point of cutting his sch hours so hopefully it will kick them into gear cos the LA won’t be impressed with him been reduced hours.
Do u have a up to date Facebook page cos I’d love to read it cos u get it
I just have this Blog online, but I do have a book coming out specific to autistic children…
This is my child he’s now 10 we have been back and forth since he was 5 he has other problems with his learning very poor working memory and very slow processing speed, he sits quietly at school and behaves but he’s like a loose cannon from the second he leaves the school door. At home and all other public places apart from school he’s hyper impulsive angry a real mix of up and down. He can’t sit still he chews all his nails off… yet he’s ok as he isn’t like this at school. I have real concerns for his future all because he’s ok at school apart from the fact he’s 3 years behind. I feel like they are playing with my child future !!
This is my son down to a T. I need help with him
I can so relate to this with my 4 year old boy. I’m having this battle with the shool
My daughter is 3 and a half and everyone always told me she showed signs of ADHD. Her hald brother who is 11 has it severe. I didnt believe them and was in denial. My health visitor came out to do her 3 and a half year review and my daughter was climbing all over her, wouldnt let her speak to me and kept shouting over her. The health viaitor asked me if this is what she is like all the time so i said yes. Straight away i had community nursery nurses organised, a referral to CAMHS and also a referral to neurodevelopmental team. Maybe if some of you have health visitors speak to them mine was the ones who picked up on it and set it all in motion. My daughter is alot better in school than she is at home but i was told by the health visitor and community nursery nurse that that happens and it doesnt mean they are completely fine.
My 12 year old daughter with autism has always been well behaved at school but also is extremely introverted at school and rarely talks. At home she is a completely different child who has nonstop outbursts from the minute she gets home from school. She is completely defiant, fights my husband and me on everything, breaks things, curses… I have spent years telling people in the school system, as well as other professionals working with her, about her behavior at home and frequently I felt as though they thought I was exaggerating or just didnt know how to handle an occasional meltdown. Many times I was offered advice on parenting which was beyond upsetting! Eventually I started to record her episodes on my cell phone while it was hidden in my pocket and in a single weeks time I had at least 16 recordings of her extreme outbursts that began from the minute she woke up in the morning. I played these recordings for the people who worked with her and literally their mouths dropped as they couldn’t believe that was the same child that they saw everyday. It wasn’t until I played them these recordings that I felt they started to take me seriously and believe everything I said about life at home. I feel these children are able to hold it in all day because otherwise they will be extremely embarrassed in front of all their classmates. However, my daughter definitely looks stressed and anxious throughout the day as was reported to me by multiple teachers. The second she gets home she has an outburst because she has been holding it in all day and it just needs to get out and what better place than the comfort of her own home. So please audio record your child without them knowing so you can play the recordings to the professionals so they will start to take your situation more seriously!!!
I can relate to this alot at the moment under going diagnosis the school believes he carnt be like it also feel they saying it my parenting which again I have learnt over the years how to deal with my son alone with no support to nip the meltdown in bud and not have a bigger battle I feel like no one’s listening no one believes as he masks it well at school then min leaves school gates meltdowns tears the lot I’ve tried explaining he’s scared of school and them there but again don’t believe me but I’ve had him sat on my knee half an hour crying till struggling to breathe stating he hates school hates the staff and kids peads agree something is wrong he has got a form of learning difficulties etc but school will not have it and it tearing me down and like I told the school I will fight this battle alone now I got to peads his teachers last year said expressed anxiety and this year teachers say he hasn’t
Won’t be shocked to know. Same here. 4 yo been to doctors twice and brushed off and health visitor agreed to take further but old nursery and new say no problems yet she doesn’t eat sleep brush teeth, spins in circles, climbs everything, runs off, interrupts all the time and has huge meltdowns after nursery and most days to be honest. Is funny about textures and clothing and fights me on everything. Loads of things in house are broken that stood the test of four children for 20+ years yet she’s broke in 2years. Honestly I feel like it’s all in my head, and if it wasn’t for my mother who had kids of her own I probably would have thought it’s my fault. She too agrees with my concerns.
I can honestly relate with what’s have said my 12 year old gets home from school walks in door and it’s minefield the abuse starts swearing and the violence I’ve made my own reference to social cate as it’s getting worse over time I’ve told school about it an£ 5hey say he’s a star pupil and it’s so annoying as I wish they would see what he’s really like as feel like they think I’m lying al, the time I’ve had diagnosis for 5 years now and medication day and night very challenging at times and frustrating as u feel like u are all alone so it was really nice to know there is people going through the same
It was a relief to see a post about this. My 4yr old son is so strong & I’m struggling and worrying about how I’m going to manage when he’s older. He’s brilliant at school. When I collect him he’s like a volcano of emotions. He ll hit, scratch, bite, kick.
He bit me a few weeks ago, I didn’t react he looked at what he’d done to my hand & broke down in tears which shows me he doesn’t mean it.
You can see the despair in his face.
If he has a meltdown when we are out, he won’t calm down till I get him home away from everyone. But the next day he will say hello to anyone & everyone. The summer holidays he was sat on the stairs rocking he looked distressed. I could say we are going to Disney land & he would say “no, I’m going to school” Everything has to be the same. But school look at me like I’m making it all up. Heartbreaking.
Thank you for writing this article. Like so many people who have commented, I am having the same problem getting an ASD diagnoses for my grandson, who I care for. He literally loses it as soon as he is out of school. Running off, refusing to get in the car, and so it continues. His teacher just says “oh he is fine in school.”
My daughter is six. She is being observed at school and they say she behaves normally. Class though she does not speak. At home she is explosive as soon as she walks through the door. She makes random noises from screeching to clicking sounds. She constantly lifts her arms above her head and claps her hands. She will swing her leg when she is nervous or existed. She eats paper and plastic. I have asked her if she does these things at school and she says no because she doesn’t want them to know. She doesn’t have friends at school and says she doesn’t understand how to make friends. She doesn’t want the kids in her class to say she’s weird. I’m not sure what to do or how to show the school what’s going on. Her fits last hours she throws things, hits things and people and bites herself and bangs her head.
Shytannia,
We are having the same. My grand daughter was 4 when after a week she started to be inattentive, disruptive , flitting from task to task, wouldn’t come in off the play ground, unsettled and over familiar with her teachers and other staff members. Not eating because of noise and smells (sensory ) I’ve worked with ASD pupils so wanted them to see her behaviour. They have been brilliant and put strategies in place and she is doing much better. I write a diary of her days both in and out of school. And write down minutes of meetings as evidence. I would urge you to do the same. Don’t give up. If you don’t get anywhere either go to the governors of the school or your local authority and make an appeal. My grand daughter masks and focuses in school and then comes home and explodes. I know the difference between a tantrum and melt down. Read as much as you can and video her discreetly if you can when she is stimming or having melt downs.
Same here, I kept the school in the loop and let them know what was going on at home. School of course thought I was doing something at home because they weren’t see it. Extreme highs when he would get off the bus and lows in tears doesn’t want to feel like this any more telling me he is stressed. This started when it was getting to the end of elementary school and next year he was going to start intermediate school, new building too. Intermediate school finally saw the meltdowns and then COVID happened of course everyone forgot about it. Me being pro mom, I was trying to get him reevaluated and into a psychiatrist… waiting list :-/
He was Suspended and then the school decided to do homebound due to meltdown causing his School Autism Consultant having a small concussion from him
I finally found ABA that would take
We were running into issues that he wasn’t Severe enough because he’s high functioning autism or his aggressions to extreme :-/
Well he was discharged from ABA
due to it being a deeper Psychosis so they were unable to see improvements to help with his behavior :-/
School Special Ed Director is now involved and she is setting up wrap around meeting…
I am afraid they are going to say he needs to be hospitalized
So I am looking into boarding school
Not sure what else to do :-/
His psychiatrist said he needs ABA
Unable to find a new one that would consider him
I believe My daughter masks in school, school have been extremely unsupportive and accused me of emotionally abusing my daughter and thats the reason her behaviour is so awful at home and perfect (their word) in school. Repeatedly reported to social services as an abusive mum. School refuse to support an assessment and have blocked it for years now. No help and ignorant people aren’t helping my child. I’ve even been accused of munchausen byproxy.. ♀️ All because I keep insisting my daughter needs an assessment.
Danielle, I’ve just read your comment and my heart goes out to you. This is disgusting. I don’t know your case but I believe you are being neglected by your child’s school. If you are not getting anywhere write to the governors of the school or go to your local authority and take your case to appeal. Video footage of your child’s traits, stims, melt downs etc.
I’ve no clue what is happening so can’t advise anything else but I do believe you are being failed.
Good luck
My grand daughter definitely has Aspergers. I’ve worked 16 years with children who have never received a diagnosis (girls) or those who have slipped through the net. I’m now seeing it from a parental view. Luckily her school are supportive. But she has already been refused a diagnosis because wait for it ‘she has good communication skills’ I’m sure you all will be familiar with some girls are quiet and others loud. We went in and spoke to the head and teacher…..concerns were she was struggling in afternoons and she wasn’t eating. She is quite hyper so he has made a referral for ADHD. The SCAT team (She is 4) are assessing her again in November. If we get know where this time because she is now behaving due to strategies and them encouraging her everyday to eat. (She has sensory issues) we will go to appeal. This is ridiculous!! I have read nearly all your comments and I am totally disgusted that the system is failing so many of your children. Keep fighting and don’t give up. You know your children best. My advice is to read up as much as u can. Also if you struggle don’t be afraid to apply for DLA. You don’t need a diagnosis to apply. Don’t give up!
To all,
I’ve asked for a home school diary to keep record of behaviour in and out of school. I always used them for my pupils
I had very similar issue with schools not wanting to help my daughter get tested for Adhd. School said she was fine no problems which was a slap in the face has we had countless of meetings with school, X amount of family support workers. Me and her father was made out we couldn’t cope. It took 8 years off fighting and begging school to help us get her reffered to camhs. Finally got her in last year due to anxiety it was the lady who ask if we ever had her tested for adhd. I told her we been trying for years but school won’t entertain idea. We gave forms to school results all came back high and same on what we see and notice. She got diagnosed last week. My daughter nearly 14 now. I am relieved but so angry on how schools kept brushing it off. Don’t ever give up if you believe they is something there
Such sad stories of children who obviously need help but getting a diagnosis still doent mean the support is there. My grandson was diagnosed at 4 with asd but he also has complex sensory issues and cant get occupational therapy as the council say they have no money. It is affecting his education as he is quite clever but the sensory issues ate holding him back. My daughter is now having to pay nearly a thousand pounds for a report from a private educational phycologist in an attempt to get him occupational therapy that he has been denied for 11 years.
“Good Behaviour at School, Not So Good at Home” is a thought-provoking blog post from the team that sheds light on the challenges faced by some children with autism who exhibit different behavior at school compared to home. It emphasizes the need for collaboration between school and parents to create a consistent support system. Thanks for addressing this issue and providing valuable insights.
Wow just came across this and this fits my daughters to a t twins that behave at school but as soon as they get home explode one is alot worse than the other and is very violent to me and her 3 siblings school don’t see any of this behaviour although we have a family support worker who has managed to get school to refer the one who is violent also my younger daughters school has now referred her as well (also thanks to the support worker)she has also been seen in school by a speech therapist because of her lack of social skills she recommended some things for school to do to help my girl but so far non have been implemented ,I just feel tired and drained all the time
Teachers and schools need educating about autism, its so sad reading these. Something has to change!!!
My daughter is autistic, school has been really supportive, but lately I feel she is being forgotten about because she is doing well with her learning (and of course that’s amazing!)but she has anxiety at home and tells me everyday she doesn’t want to go to assembley and asks me everyday if she has assembly tomorrow. She has melt downs as soon as she comes out of the classroom, walking to the car. I have told her teacher she is struggling with assembly and asked if she can not go to them anymore. I get the feeling they think I’m over reacting because at school she seems fine. But I will see what sort of support she receives with this.
There is more to her needs other than education…..
good