15 yo son just been diagnosed with autism and refuses help

Hi Elpis,

I do apologise sincerely in advance for my obscenely long reply- I have tried my best but I couldn’t make it any shorter as there was a lot in your post that I felt needed unpacking.

It sounds to me as if your son has become completely and utterly lost, bless his young heart.

I am making assumptions here because I have no further information, but I imagine it likely your son may have limped his way through years 7, 8 and 9 as best he could, with perhaps his difficulties becoming more pronounced and alienating him throughout, which may have led to your seeking a diagnosis for him, only for things to reach critical stage last year? I think therefore it may be possible that your son’s needs and difficulties may have never yet been fully understood or addressed effectively to date, and it may therefore be highly likely that you and your son are now suffering the critical consequences of that prolonged failure.

Firstly, I don’t know how educated you are about Autism as your sons diagnosis is very new, and there were parts of your post which suggested that there are things about your son that are not making any sense to you right now (such as his changing his mind etc.) and yet, to me, his behaviours seemed really understandable from an ND perspective; so therefore I would recommend that you learn all you can about ASD in order to best understand exactly where your son may be coming from. If you are already educated about Autism you will know that your sons understanding of himself and the world around him (including his experiences and feelings about school) may be very different to other NTs (typical teens) his age, and that this can and will significantly impact upon his wellbeing and capabilities in some critical areas. 

I would therefore gently and respectfully offer the following points in the hope that, by suggesting possible causes of your son’s behaviours, this may help you understand where he might be coming from and perhaps help you to help him. Being ND (NeuroDiverse=on the spectrum) may mean:

Your son may be deeply afraid of and incredibly confused by change; and wholly unable to manage transitions (big or small) unsupported. In practical terms this means that it is not really good enough for a teacher to ‘coax’ him back to school on the first day back; your son ideally needs an educated, considered and thought out plan which has been agreed between him and the school in advance which can enable him to feel very safe and choose to return to school under his own free will. This situation itself rings alarm bells for me and suggests to me that there is no effective plan in place to constructively help your son gently and kindly back into school, (such as staggered re-entry, attending only an hour a day to begin with, small groups only, etc.) as it sounds as if everyone was simply winging it on the first day back instead?  After such a traumatic year out, I would respectfully suggest that expecting your son to simply return to school in any ‘normal’ way on any day was highly optimistic if not unrealistic.

Your son may have subtle and complex difficulties in the ways in which he perceives, understands and processes events and problems, and therefore he may not fully comprehend exactly what it is that is going wrong for him. In ‘real life’ terms this may mean that he may have difficulties with recognising and understanding his own feelings and his own responses to situations and events; he may only know that he is feeling unhappy and uncomfortable, but he may not fully understand what is specifically making him feel this way and why. This difficulty could show itself as him seeming to ‘change his mind’ about what he wants daily, but I suspect that, rather than this being a demonstration of him ‘being difficult or awkward’ or similar, this is more likely indicative of the fact he may be feeling deeply confused, and not fully understand what is going on, what is expected of him or what to do for the best.

Your son may have impairments in ‘imagination’ and communication skills so he may not be able to imagine alternative solutions to his current problems, nor effectively comprehend or convey his feelings, experiences or problems to you or others. So he may genuinely be unable to think of or tell you ways in which you or his school could help him.

Your son may not be as ‘emotionally’ mature as his peers and therefore he may have found the school environment too hard to manage as the years progressed and more independence and new skills will have been increasingly expected of him throughout (particularly from the start of Year 10 onwards) that he may not yet (or in some cases ever) be actually able to do, understand, achieve or manage.

These points (above) can ALL be very common aspects of being a high functioning ND. And therefore, it is very easy to see why your son may genuinely not know (nor can he necessarily effectively tell you) how he feels, what he wants, what the problem is, what he needs, or what the solution might be, unlike other NTs his age who can usually do so very easily.

I really do sincerely wonder here Elpis if your son is simply not as ‘capable’ as perhaps the school or others are currently assuming him to be? Our high functioning NDs suffer profoundly because their sophisticated differences and complex difficulties are hidden from plain sight in this way. The greatest pain and distress for NDs is if people around them expect them to reason, think, understand, feel, respond and behave as if they are not ND. And I really do wonder if, because your sons diagnosis is so new, no one has yet got a real handle on just how affected by ASD your son really is.

However, I believe that your son is doing his very best to communicate with you, in the only ways he may currently have at his disposal, which is through his anger and his refusals. Listen to what his behaviour is telling you; something has gone so very wrong for him at school to such a degree that he fights against going there so strongly, fighting as if his life depended upon it- perhaps he feels that it does- perhaps school is so painful an environment for him that he does not feel as if he can literally survive it- looking at it from this perspective it is easy to see why he would fight so hard (so bravely) to avoid the place. He is already telling you some of his difficulties in school i.e. the noise and too many people- listen to him; this is telling me that everyday school life is currently far too chaotic, too overwhelming and too threatening for him. What could you and the school do to change this for him? If you and the school are not aware of appropriate adjustments to put in place for him, the school needs to contact their Local Authority Autism Team who can help them. Your son may also benefit from school referring him for an Educational Psychologist Assessment who should be able to help identify the specific problems he has in school and can provide guidance on how best to address them.

I know you said he had minimal support in place- which I couldn’t entirely understand what you meant- however, your son may not be able to imagine how the support can help him and therefore he may need to experience this support for himself first in a less formal setting, before he can trust this support (whatever it may be) such as, if it’s a person, meet them informally and let him spend time with them and get to know them before formal lessons begin, or if this ‘support’ is a technique of some sort, let him try it out in a quiet setting with just him and the teacher and you there too perhaps, who can reassure him, show him exactly how they will help him, what they will help him with and when etc. Currently I imagine that even the support is feeling like an unknown and serious threat to your son, who has already suffered so much with his ASD being unrecognised until last year, and with his anxiety and depression too (which may have been aggravated by his ASD not being picked up sooner?).  He may currently feel that even accepting any (new, unknown) ‘support’ is too much of a risk for him to take right now in his fragile state. But he may not be able to conceptualise his concerns and thus may not be able to inform you of this directly.

I know you said that your son just wants ‘everything to be normal again’ but I take this statement to mean he longs for a previous (perhaps less complex, stressful, or confusing) time in the past; and that this is what he is actually desperately needing and wishing for now, and so if you and school (Autism Team & EdPsych too) can get your heads together and think of some creative solutions which could actively make things more nurturing, more gentle, more simple, more safe, and far less stressful, complex and confusing for him, you will be making life ‘normal’ i.e. feel manageable and safe for him once again as it once was. Your son likely has subtle but pervasive communication difficulties and therefore you and others around him need to learn to not necessarily take what he says at face value but instead learn to look deeper and ‘read between the lines’ in this way.

I know that your son may not be able to help you to help him as much as NTs his age usually can; that you might not be getting the clear information, reciprocity, or direct feedback from him that could help you to make decisions or suggestions on his behalf; but this is ASD, and he may need you to work this stuff out for him, using everything you know about Autism, everything you know about your son, and everything you know about what has taken place in school to date to help you with the priority task of bringing joy back into his life and enabling him to gently move forward positively. If moving forward includes attending school again, so be it, but if it doesn't, if your son genuinely needs a different approach to education, (such a P/T attending, home education, alternative provision,) that might be something to consider too? 

Please do post again if you want to talk further about any of the points I have made. I can’t promise I will respond personally but everyone on here is usually really fantastic at helping one another.

Best of luck.

Hi Elpis,

I do apologise sincerely in advance for my obscenely long reply- I have tried my best but I couldn’t make it any shorter as there was a lot in your post that I felt needed unpacking.

It sounds to me as if your son has become completely and utterly lost, bless his young heart.

I am making assumptions here because I have no further information, but I imagine it likely your son may have limped his way through years 7, 8 and 9 as best he could, with perhaps his difficulties becoming more pronounced and alienating him throughout, which may have led to your seeking a diagnosis for him, only for things to reach critical stage last year? I think therefore it may be possible that your son’s needs and difficulties may have never yet been fully understood or addressed effectively to date, and it may therefore be highly likely that you and your son are now suffering the critical consequences of that prolonged failure.

Firstly, I don’t know how educated you are about Autism as your sons diagnosis is very new, and there were parts of your post which suggested that there are things about your son that are not making any sense to you right now (such as his changing his mind etc.) and yet, to me, his behaviours seemed really understandable from an ND perspective; so therefore I would recommend that you learn all you can about ASD in order to best understand exactly where your son may be coming from. If you are already educated about Autism you will know that your sons understanding of himself and the world around him (including his experiences and feelings about school) may be very different to other NTs (typical teens) his age, and that this can and will significantly impact upon his wellbeing and capabilities in some critical areas. 

I would therefore gently and respectfully offer the following points in the hope that, by suggesting possible causes of your son’s behaviours, this may help you understand where he might be coming from and perhaps help you to help him. Being ND (NeuroDiverse=on the spectrum) may mean:

Your son may be deeply afraid of and incredibly confused by change; and wholly unable to manage transitions (big or small) unsupported. In practical terms this means that it is not really good enough for a teacher to ‘coax’ him back to school on the first day back; your son ideally needs an educated, considered and thought out plan which has been agreed between him and the school in advance which can enable him to feel very safe and choose to return to school under his own free will. This situation itself rings alarm bells for me and suggests to me that there is no effective plan in place to constructively help your son gently and kindly back into school, (such as staggered re-entry, attending only an hour a day to begin with, small groups only, etc.) as it sounds as if everyone was simply winging it on the first day back instead?  After such a traumatic year out, I would respectfully suggest that expecting your son to simply return to school in any ‘normal’ way on any day was highly optimistic if not unrealistic.

Your son may have subtle and complex difficulties in the ways in which he perceives, understands and processes events and problems, and therefore he may not fully comprehend exactly what it is that is going wrong for him. In ‘real life’ terms this may mean that he may have difficulties with recognising and understanding his own feelings and his own responses to situations and events; he may only know that he is feeling unhappy and uncomfortable, but he may not fully understand what is specifically making him feel this way and why. This difficulty could show itself as him seeming to ‘change his mind’ about what he wants daily, but I suspect that, rather than this being a demonstration of him ‘being difficult or awkward’ or similar, this is more likely indicative of the fact he may be feeling deeply confused, and not fully understand what is going on, what is expected of him or what to do for the best.

Your son may have impairments in ‘imagination’ and communication skills so he may not be able to imagine alternative solutions to his current problems, nor effectively comprehend or convey his feelings, experiences or problems to you or others. So he may genuinely be unable to think of or tell you ways in which you or his school could help him.

Your son may not be as ‘emotionally’ mature as his peers and therefore he may have found the school environment too hard to manage as the years progressed and more independence and new skills will have been increasingly expected of him throughout (particularly from the start of Year 10 onwards) that he may not yet (or in some cases ever) be actually able to do, understand, achieve or manage.

These points (above) can ALL be very common aspects of being a high functioning ND. And therefore, it is very easy to see why your son may genuinely not know (nor can he necessarily effectively tell you) how he feels, what he wants, what the problem is, what he needs, or what the solution might be, unlike other NTs his age who can usually do so very easily.

I really do sincerely wonder here Elpis if your son is simply not as ‘capable’ as perhaps the school or others are currently assuming him to be? Our high functioning NDs suffer profoundly because their sophisticated differences and complex difficulties are hidden from plain sight in this way. The greatest pain and distress for NDs is if people around them expect them to reason, think, understand, feel, respond and behave as if they are not ND. And I really do wonder if, because your sons diagnosis is so new, no one has yet got a real handle on just how affected by ASD your son really is.

However, I believe that your son is doing his very best to communicate with you, in the only ways he may currently have at his disposal, which is through his anger and his refusals. Listen to what his behaviour is telling you; something has gone so very wrong for him at school to such a degree that he fights against going there so strongly, fighting as if his life depended upon it- perhaps he feels that it does- perhaps school is so painful an environment for him that he does not feel as if he can literally survive it- looking at it from this perspective it is easy to see why he would fight so hard (so bravely) to avoid the place. He is already telling you some of his difficulties in school i.e. the noise and too many people- listen to him; this is telling me that everyday school life is currently far too chaotic, too overwhelming and too threatening for him. What could you and the school do to change this for him? If you and the school are not aware of appropriate adjustments to put in place for him, the school needs to contact their Local Authority Autism Team who can help them. Your son may also benefit from school referring him for an Educational Psychologist Assessment who should be able to help identify the specific problems he has in school and can provide guidance on how best to address them.

I know you said he had minimal support in place- which I couldn’t entirely understand what you meant- however, your son may not be able to imagine how the support can help him and therefore he may need to experience this support for himself first in a less formal setting, before he can trust this support (whatever it may be) such as, if it’s a person, meet them informally and let him spend time with them and get to know them before formal lessons begin, or if this ‘support’ is a technique of some sort, let him try it out in a quiet setting with just him and the teacher and you there too perhaps, who can reassure him, show him exactly how they will help him, what they will help him with and when etc. Currently I imagine that even the support is feeling like an unknown and serious threat to your son, who has already suffered so much with his ASD being unrecognised until last year, and with his anxiety and depression too (which may have been aggravated by his ASD not being picked up sooner?).  He may currently feel that even accepting any (new, unknown) ‘support’ is too much of a risk for him to take right now in his fragile state. But he may not be able to conceptualise his concerns and thus may not be able to inform you of this directly.

I know you said that your son just wants ‘everything to be normal again’ but I take this statement to mean he longs for a previous (perhaps less complex, stressful, or confusing) time in the past; and that this is what he is actually desperately needing and wishing for now, and so if you and school (Autism Team & EdPsych too) can get your heads together and think of some creative solutions which could actively make things more nurturing, more gentle, more simple, more safe, and far less stressful, complex and confusing for him, you will be making life ‘normal’ i.e. feel manageable and safe for him once again as it once was. Your son likely has subtle but pervasive communication difficulties and therefore you and others around him need to learn to not necessarily take what he says at face value but instead learn to look deeper and ‘read between the lines’ in this way.

I know that your son may not be able to help you to help him as much as NTs his age usually can; that you might not be getting the clear information, reciprocity, or direct feedback from him that could help you to make decisions or suggestions on his behalf; but this is ASD, and he may need you to work this stuff out for him, using everything you know about Autism, everything you know about your son, and everything you know about what has taken place in school to date to help you with the priority task of bringing joy back into his life and enabling him to gently move forward positively. If moving forward includes attending school again, so be it, but if it doesn't, if your son genuinely needs a different approach to education, (such a P/T attending, home education, alternative provision,) that might be something to consider too? 

Please do post again if you want to talk further about any of the points I have made. I can’t promise I will respond personally but everyone on here is usually really fantastic at helping one another.

Best of luck.

Hi Angel Dust,

Sorry for late reply. It is so refreshing to hear someones point of view who fully understands where our son is coming from. There are a lot of points you make that are so valid and have helped. I am immersing myself in knowledge of autism and am very sympathetic towards my son and fully accepting of his diagnosis but as you say we are only at the beginning of the journey. 

We have had a p/t timetable in place for the last 6 weeks of the summer term which he was accessing but in an adhoc way. As he has never liked change these were the difficulties he found with the p/t timetable - changes of teachers, change of classrooms etc- so could not access it fully. Since then we have had summer which has been good. My son was adamant that he wanted to go back to school full time without any adjustments in place. We had talked about going somewhere  quieter at break and lunch but his reply was that he didn't want to not be with his friends. He thought going from class to class 5 minutes before the bell would be a good idea but again refuses this when it comes to implementing this. 

He has now started going back p/t but this time he is choosing when to go in and for what lessons until he is , in his words, 'ready to go back full time'. We were doing ok until yesterday when he was supposed to go in for an Educational Psychology assessment. He refused , getting into a highly agitated state. We had been here before a week and a half ago and ended up calling emergency services due to aggressive outburst with suicidal ideations. He hasn't been able to go in today. We are going to try again tomorrow. My worry is is how long will school be this flexible? I am trying to get hold of someone at SENDIASS to speak to regarding this.

Our main thing we are up against is my son's idea that he does not need help and wants to do what everyone else has to do. My feeling is that he has carried his ASC around with him for the last 15 years and has struggled in silence and feels that has got him through (only just though) so it will carry on working that way. He was relieved with the diagnosis because it confirmed his feelings of 'feeling different' (from he tells us, age 7) yet it is not yet helping him with accepting help. We just don't know the best way to handle this. Do we still provide the love and support we always have and always will but let him learn for himself (which to me seems a v dangerous way to do things given his deep depression last year) or do we push for some kind of support from CAMHS? My husband and I are due to start the Cygnet parenting course at the end of September and when they have finished my son will be handed over to the complex needs team (mid November) however CAMHS have been very vague as to what they will entail.

In the meantime we are just trying to provide him with a stable, quiet ,unpressurised home life so he can at least enjoy, or begin to enjoy again, some aspects of life. However my worry is the world doesn't seem to wait for people who are ill and at such a crucial stage of their education. There doesn't seem to be many options out there.