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 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.

Hi Elpis,

I’m really glad you’re posting, I have been thinking of you and wondering how things were going for you and your son.

It’s fantastic that school are accepting of your sons need for a P/T time staggered start on his terms. I do understand your fear of how long school will tolerate this but I think the Law may be on your side here. Now school have already agreed to this by currently ‘allowing’ it, I think they would now have to prove a valid reason not to continue if they ever wanted to stop offering it. And I think the only valid reason they could ever have would be if there was evidence that your son has no intention of ever returning to school full time. So, as long as school believe he intends to make a return to full time education at some future point, I think they have to keep continuing offering him options. If school ever do start to talk to you (or threaten you) about not being able to accommodate your son any longer, please don’t make any decisions or agreements with them without first contacting IPSEA for advice.

So, as the school return was going really well (on his terms) until the EdPsych Assessment, do you wonder if it was still too much for your son to handle in one go, all in the very first few weeks of returning to school? Trying to manage his return to school then having to worry about an assessment on top? Maybe you could delay the assessment until he is feeling more relaxed about and in control of his school return situation once again? I know you are likely hoping one will help the other but, could a delay really hurt? Giving him a chance to return to school on his own terms and see what happens?

Returning to the underlying issue of you feeling ‘up against your son not wanting help‘ the difficulty here seems to be working out whether he is refusing help due to anxiety about it, or whether he is refusing help simply because he really doesn’t want it. If it is the former (anxiety) I am wondering whether he is accessing any counselling to help manage his anxiety or depression- CAMHS don’t always offer it and can sometimes only offer CBT sessions with a Mental Health Nurse instead which may not always be as helpful as an experienced and qualified therapist can be.

However, if it is the latter (he really doesn’t want the help for ‘valid’ reasons i.e. not reasons fuelled by fear) I have no idea whether what I am now going to offer you is good or bad advice but, my sense is that, I think in some ways, you have no choice really but to let your son take the leading role in guiding himself, mistakes (warts) and all.

Giving your son the power to control his own return to school seemed to be working really well so, I am thinking, perhaps your son really needs you to (continue to) give him the power to choose for himself in this way right now? Even if this means making mistakes, perhaps making mistakes does not feel half as bad to your son than having no choice or no control over his own life and school experiences? I am thinking along the lines of; if you give him the option to refuse help and respect his decisions, it may help him to eventually trust himself (and others) again and choose to accept change or help in the future?; as he may feel more reassured (confident) that things (control and power over the things) that are happening in his life really are happening with his consent and on his own terms?

I really do understand your fears about risking to trust your sons judgement in this way right now because of his difficulties and fragile mental state, you have all been through so much, and obviously you must continue to monitor his needs and step in and take decisions (with his agreement or not) when his safety or wellbeing are at risk, however, with all other areas of his life, when his safety and wellbeing are not at direct risk- I gently ask, could you learn to deeply trust him and trust yourself and let him make his own decisions, even seemingly ‘bad’ ones too?

I am so aware that his diagnosis is so new and one of the many things a diagnosis can do is to completely shatter parents trust in themselves, trust in their parenting methods, trust in their child and trust about (the world and) their child’s future too. I think this is because, although often expected, it can also be a total bombshell too, and it kind of rips up the ‘parenting handbook’ and can leave parents feeling lost and having to rewrite a new one from scratch, usually with little or no help, support or experience to help you, which is terrifying. And the future can become a deeply fearful unknown too, especially during the first 18 months or so of first receiving a diagnosis. The future is always an unknown for every single one of us, but a diagnosis for your child can (temporarily) raise your awareness of this fact to terrifying heights.

So, this may be bad advice but, I admit that I would be tempted to continue to gently hand your son the reins (within safety limits) as doing this so far (with his recent school return) seems to be working, a ‘standing by but standing back’ approach and see what he does with them - he really might pleasantly surprise you?

Very best of luck.

Again, thank you for your reply. It's just so helpful to have someone who is so knowledgeable to give a perspective which allows us to think through our decisions. I am currently starting to build up a network of support and through a local charitable organisation I will be able to access an Educational Solicitor but am aware of IPSEA too. 

Re Ed Psych assessment, I did speak to him on the phone and he did say maybe in a few weeks  my son would be more acceptable to the idea and we could try again. I don't mind a delay as I was hoping it would help him after school and in the future (was hoping it would help him get into college).

My son's refusal of help seems two-fold. He says he doesn't value education but he needs the structure of it as he doesn't just want to "drift". He doesn't attach value to getting good grades, just enough to get him through to the next stage (college) however he then says he does want to do well in English (which he has a passion for and excels in) - so he obviously is attaching value to the things he is interested in and does not fear. He has a specific career plan (film director) and believes if he really wants to do this he can achieve this anyway he chooses, with or without the qualifications needed. Yes he doesn't want support because he wants to be in control (I suppose this is the fear element) and go down the same path as everyone else.

He's just finished CBT (9 months with a Mental Health Nurse who has found it challenging and has discussed that he's not been able to address CBT as he would do normally) so we wait to see what happens next in November when we meet with the lead practitioner of the Complex Needs Team. This is where we will be able to take your point on board and ask, amongst other things, how they can help him manage his anxiety and depression. 

So Yes I feel you are right that my son needs us to give him the power to choose (he says, in general terms, that if someone tells him what to do he will do the opposite). I do think this is the way forward to enable him to build up trust with the world again but like you suggest, with us in the background stepping in when needed as regards to well being.

Yes I do feel like the parenting rule book has been ripped up but then again I've been struggling with it with him throughout his (undiagnosed) teenage years. This is the journey I am now on - trying to write a rulebook that will help him and so I am in the process of building up a network of people and organisations that will help guide us through this very long (and bumpy) process.

The battle I have with myself (and I suppose this is the one my son is having too) - should we just carry on through the education system and life as normal without putting extra support in place or should we adjust to a life where autism dominates and affects our decisions and choices.I suppose its finding a balance of the two and I expect this will fall into place over the coming months and years. I see the world from a very different perspective and a parents perspective (I can see the pitfalls and the struggles life throws at you) and it is this world my son will have to navigate through with his own unique perspective. We will always keep him close and will always be watchful of him. We will 'stand by and stand back' , he is 15 and so desperately wants and needs independence like any other teenager/young person.

Unfortunately our local colleges don't seem to provide the support or opportunities that yours do (and this is where I was hoping the Ed Psych report would help) but this is something I am now looking into speaking to various people with the knowledge I need. There is nowhere to resit GCSEs unless it's English and Maths  and it's needed for your course. Homeschooling/self learning is not an option as my son doesn't respond to this , he doesn't like the 'unstructured feel to it' - 'a home is a home not a school' are his feelings.

You have helped immeasurably and given so generously of your time I can't thank you enough. Me just writing down responses to others thoughts are helping me to order mine. I am hoping to meet many more people like you along our journey. Take care and thank you.

Again, thank you for your reply. It's just so helpful to have someone who is so knowledgeable to give a perspective which allows us to think through our decisions. I am currently starting to build up a network of support and through a local charitable organisation I will be able to access an Educational Solicitor but am aware of IPSEA too. 

Re Ed Psych assessment, I did speak to him on the phone and he did say maybe in a few weeks  my son would be more acceptable to the idea and we could try again. I don't mind a delay as I was hoping it would help him after school and in the future (was hoping it would help him get into college).

My son's refusal of help seems two-fold. He says he doesn't value education but he needs the structure of it as he doesn't just want to "drift". He doesn't attach value to getting good grades, just enough to get him through to the next stage (college) however he then says he does want to do well in English (which he has a passion for and excels in) - so he obviously is attaching value to the things he is interested in and does not fear. He has a specific career plan (film director) and believes if he really wants to do this he can achieve this anyway he chooses, with or without the qualifications needed. Yes he doesn't want support because he wants to be in control (I suppose this is the fear element) and go down the same path as everyone else.

He's just finished CBT (9 months with a Mental Health Nurse who has found it challenging and has discussed that he's not been able to address CBT as he would do normally) so we wait to see what happens next in November when we meet with the lead practitioner of the Complex Needs Team. This is where we will be able to take your point on board and ask, amongst other things, how they can help him manage his anxiety and depression. 

So Yes I feel you are right that my son needs us to give him the power to choose (he says, in general terms, that if someone tells him what to do he will do the opposite). I do think this is the way forward to enable him to build up trust with the world again but like you suggest, with us in the background stepping in when needed as regards to well being.

Yes I do feel like the parenting rule book has been ripped up but then again I've been struggling with it with him throughout his (undiagnosed) teenage years. This is the journey I am now on - trying to write a rulebook that will help him and so I am in the process of building up a network of people and organisations that will help guide us through this very long (and bumpy) process.

The battle I have with myself (and I suppose this is the one my son is having too) - should we just carry on through the education system and life as normal without putting extra support in place or should we adjust to a life where autism dominates and affects our decisions and choices.I suppose its finding a balance of the two and I expect this will fall into place over the coming months and years. I see the world from a very different perspective and a parents perspective (I can see the pitfalls and the struggles life throws at you) and it is this world my son will have to navigate through with his own unique perspective. We will always keep him close and will always be watchful of him. We will 'stand by and stand back' , he is 15 and so desperately wants and needs independence like any other teenager/young person.

Unfortunately our local colleges don't seem to provide the support or opportunities that yours do (and this is where I was hoping the Ed Psych report would help) but this is something I am now looking into speaking to various people with the knowledge I need. There is nowhere to resit GCSEs unless it's English and Maths  and it's needed for your course. Homeschooling/self learning is not an option as my son doesn't respond to this , he doesn't like the 'unstructured feel to it' - 'a home is a home not a school' are his feelings.

You have helped immeasurably and given so generously of your time I can't thank you enough. Me just writing down responses to others thoughts are helping me to order mine. I am hoping to meet many more people like you along our journey. Take care and thank you.