Hello - Asperger's diagnosis/school advice needed

Hi everyone

Long time no see.  I have an update for you, and it's possibly the longest post you'll ever read, so here goes.  It's not pretty.

I've been a member here for a while but were blocked in every way from getting Dan help in Yorkshire, and are now living in Newcastle, nearer family. We've always believed Dan is on the spectrum, but have not been successful in Yorkshire at getting him diagnosed, and for years we were told that we shouldn't push the issue as he would suffer for having a "label" and that all his behaviour was normal for his age. It's not that the signs weren't there, it is that he was passed around, which is a problem in many areas. CAMHS would say it was an EP issue, EP would say it wasn't in structured classroom time that he had problems but in unstructured times so he wasn't their problem either.

You've seen a lot of Dan's history in the older post above, but some of it ties in so much I can't seperate it out, so I've had to do a full history again, adding in the new bits. 

Dan was a delayed speaker, never crawled (just got up and walked at 16 months), and had years of speech therapy. He had facial tics, scrunching his nose a lot. He would avoid eye contact and physical contact, and would bite and "freak out" when picked up or restrained in any way. He has tested as having extremely poor working memory and at one point in primary school was diagnosed with dyslexia, which was then retracted in secondary school. He was on the gifted and talented register but also on School Action Plus for social issues and his reading/writing. Dan always struggled socially and only had one friend, who was similar in nature - reserved, on the outskirts, not very good at reading others' emotions and intentions (and both were prone to being bullied/exploited as a result). 

Dan started to get very stressed by school at around the age of 9, and started to run off as we walked home. He has not worn a coat in 10 years, even in the snow or peeing rain as he can't stand the feel of them. We once had to replace a brand new sofa as he couldn't bring himself to sit on it as he hated the feel. He has not learned to swim as the noise at swimming pools was too much for him. We learned not to take him to or throw him birthday parties as being around more people than just us would result in him taking himself off to his room and shutting off. He would hold in emotions until they got to boiling point and then take himself off somewhere and curl up in foetal position and not allow people near him (he would growl and rock). Dan collected bottle tops and lego men and would get very agitated and anxious if the men weren't in position on the windowsill of his room or if the bottle tops were not in his pillowcase - how he slept with them in there I have no clue.

Fast forward to secondary school and the immediate problem was that although his IEP should have been continued, it was dropped. Dan found assertive and overtly masculine people (particularly adults/teachers) very frightening and would run away if told off by one. He was bullied but didn't really realise it - kids would tell him to do ridiculous things and he would do anything they said (including very dangerous things). The SEN at the secondary school was amazing and adamant that Dan had Asperger's or similar, but the school would not back her. Dan did get an EP initial assessment, where he refused to engage, saying "I'm fine" to everything, and was written up as having low self esteem and nothing else really.  However, the EP rang me at home and said he felt Dan had "rehearsed" the whole thing and had social issues, probably ASD.  When none of that appeared in the report, I was totally gutted - I felt like the system were preventing him from getting help on purpose.  I spoke to other parents of special needs kids at the same school and many had the same problems, and were dropping their kids out.  Dan was labelled "just a bad lad" by teaching staff, this was an issue with the entire school's attitude to SEN - wait for them to drop out. The SENCO would explain to his teachers that he had to be able to walk out at some points when he wasn't coping, but teachers would restrain him physically from doing so and he would panic like a trapped cat, and "kick off", empty threats and shouting that would get him in more bother and then he would run away (twice to another city!).  Dan was often accused of being "on something" by secondary school staff as him rocking from side to side, agitated, and flicking his hair with his hand made him look "like he's hiding something".  It didn't help that he had blood sugar problems too.  The school were refusing to help him in "unstructured" time which was his hardest part of school.  They said it wasn't their job to supervise him and he had to toughen up.  He was treated as a big of a mug by other kids, which at one point landed him in hospital when they grouped round him chanting at him to drink a swig of Jack Daniels and he drank the lot, half a litre.  He told me afterwards that he couldn't bear the chanting and just wanted them to stop.  Of course kids do stupid things and try to get out of it, but to this day he felt although he wouldn't do that now, the noise played a part.  That was the beginning of him starting to use spirits as a means to "zoning out" in social settings in particular, and he also tried marijuana twice, and had his first sexual experience (with a girl he met the day before, at 13  ).  

We felt like we were walking on eggshells at home once the hormones came in - he would always see everything as totally black and white and it was a fine line between dealing with his issues and becoming doormats.  We either worked our damnedest to keep him calm (and he was reasonable when not attending school), or spent the night dealing with the police out looking for him.  I remember desperately trying to stay on his good side and not surprise him with anything.  The other kids were suffering, seeing Dan as stealing attention away from them and getting softer treatment (he wasn't, discipline/boundaries just had to be approached/enforced differently and he'd gone way beyond them).  He often felt there was "no point" and was very low that he couldn't cope with school and with reading the intentions of other kids. He started to punch walls and himself.  He nearly got to the point of hitting us.  I was the only one who could "talk him down" from outbursts and even then it didn't always work.

He couldn't bear having his hair cut, and so began to refuse, using it to hide behind the longer it got (this is an ongoing issue) and flapping it with his hand when talking or anxious. He would cover his face with his hand when talking and would struggle with eye contact. He wouldn't wear his prescription glasses as they felt "wrong" on his face. He still doesn't, despite having pretty severe impairment. He is sadly not able to have contacts.  He would (and still does) go out inappropriately dressed for the weather.  Sometimes I would get up and he had climbed out of his window and slept in the garden (presumably after sneaking off to drink with losers). 

We knew we just had to move away for a fresh start for him, so we came to Newcastle where some of my family are.  We saw the GP soon after coming here, December 2011 and he referred Dan back to CAMHS as we felt he was depressed and still showing behaviours that we needed answers for - running away, locking himself in the bathroom and rocking, not coping with the change at all.  We knew getting him in mainstream school would be an issue and the education department suggested we send him to a Pupil Referral Unit, not as a "bad kid" but because class sizes were small and they were aware of his needs - they were happy to give him the same day to day routine of an ASD child. They were absolutely great and totally "got" him, meaning he improved vastly in school and out, but unfortunately he was assaulted by a student just outside the gates. He was so badly beaten the police said he couldn't return for his safety. So he had to go into one on one tutoring for half an hour a week in a library and his mood slipped again, although at this point he had made a stand saying he wasn't going to run away ever again.  

He had no friends and started to go into the city with his brother to meet new people, which was a well intended idea but didn't work out that way. His lack of awareness of risks got him into bother again when he brushed off his brother, accepted a drink off a "best friend" he'd only known for that afternoon, and was drugged with GHB, taken away by 3 strangers to a remote location and burned with lighters, beaten and left in a pond. 

As a result of this and obviously a culmination of the other assault and his social problems, Dan began to break down. He punched a phone box, breaking his hand, and had to have surgery to have pins in. He couldn't bear having a pot on and repeatedly removed it himself, having to have it redone three times. He felt trapped by his new decision not to run away any more (but can't ever be seen to lose!), and soon after surgery he fully broke down, locking himself in the bathroom after trashing things in the house, and attempting to pull the pins out of his hand with his teeth as he couldn't bear them any longer. We had to hospitalise him, only over night, but finally got the attention of the medical and mental health community more than any of our repeated begging. 

Dan came home to involvement from social services, the emergency mental health team, Barnados and a local runaway charity called SCARPA. CAMHS (who had still not sent us an appointment, 8 months after referral) promised they would see and assess him on the ward, but didn't, then promising an appointment within a week, which was cancelled by them after he got home. The emergency mental health/initial response team carried out a questionnaire as a first step in assessment for ASD as they felt it was blindingly obvious he had those sorts of issues. Dan got an appointment with the chief paeditrician of the local hospital who's special interest was teenage lads labelled as "bad" who might be "borderline" for certain conditions. He felt Dan has aspects of ASD, OCD and ADHD among other issues, but just "bits of everything, not enough", and felt it would be unlikely that he would get a diagnosis as he was functioning too well. He diagnosed him with reactive depression alongside these comments.  He helped us to chase up CAMHS to get proper assessments done.  No response.

Since then (last summer) Dan recovered well and gained a very small group of friends, also starting at the 14-16 provision at the local college under the oversight of the PRU he had attended. He had issues at first with attendance (mostly problems with room changes without notice which panicked Dan a lot, and the course being across 3 different campuses) but because the paediatrician put in writing that Dan had social issues, rigid and inflexible thinking, etc, he made leaps and bounds. The consultant also suggested things such as visual cues and timetables and the ability for Dan to be able to have five minutes out if he felt he needed it.  Dan stopped drinking altogether. He has had a slip in mood recently when he saw that he wasn't getting the qualifications others in mainstream school were getting. He has a tendency to obsess over certain topics for months on end, one was GCSEs and another was surrounding his strength and whether he would win a fight (both understandable but not appropriate in intensity or duration). 

I have avoided talking much about ASD with Dan as everyone kept saying not to label him. However, Dan himself feels he struggles to read other people socially and that he has issues he struggles with even when he is not low, such as crowded places, textures, making friends his own age, etc.  Dan told me how when he had to walk through a local festival, he really didn't like all the people and noise, and had to leave, and how he has learned to "zone out - like feeling stoned".  He wears earphones in class time.  He can't have anyone touch his back as it makes him feel sick and faint.  He is similar with his hair.  

Routine wise he is a bit inflexible without careful planning - he would refuse any upcoming appointment or visit from the interventions if it meant having to change his routine.  He reflects emotion - that's my term for it but what I mean is that if anyone is angry or upset, he becomes agitated and fidgety even if he himself feels he has no reason to be that way (eg. when my other two children were being "told off"). He has only allowed my sister to cut his hair and even then it was once in 18 months. He still can't wear a coat. He struggles sharing a room (as many teens do I know) and can't have anyone touch his things. He is overtly clean for a teenage boy, washing his hair twice a day and being unable to go out without doing that, even if he's going to make himself late for something. He flaps his hand in his face (elbow on lap, finger/hand running across face repeatedly) when talking to someone or when nervous, and flicks/runs his fingers through his hair with his hands repeatedly, more so (and more exaggerated) when anxious. He fidgets a lot when anxious, rocking side to side from foot to foot. He can get very righteous and angry over his black and white view of things, or be "blank" and uncooperative, but is controlling himself far more now. 

Last week we finally got his CAMHS appointment (yes, 18 months later!) and they want to immediately assess him for ASD - we did get an apology and the PMHW was lovely. I feel a bit sick about it as I was prepared for this years ago and half of me feels it's too little too late, the other half feels relieved but angry. I worry about him growing up and not coping in college and the workplace though and he wants answers. I do too but not if it's me being "over protective" as the previous team suggested. They've said that regardless of the ASD assessment route, he will be getting workshops/therapies offered now. Whether or not I can get him to engage when he shuts himself off I don't know.

I'm really sorry for the long post, I tried to cut it down. What I really need to know is whether this raises any ASD flags to any of you (I kindof think it will) and what the process is in the UK for assessing ASD at this late age - if anyone knows that is!  I am really concerned about how he has developed coping mechanisms that hide some of his issues and may mean he's overlooked even more than he was when it was more obvious. 

On a side note, Dan's cousin (my identical twin's son) has just been diagnosed with Asperger's (not formal for another fortnight) and quite severe sensory processing disorder, not sure if that's relevant as I don't know how much these things "run in families". However, her son had more obvious signs and is still in primary school.  That said, Dan's biological father (who has not been on the scene in 13 years) was thought by his childhood social workers to be on the spectrum, and I know he had several diagnoses that he wouldn't share with me in our time together.  Have things for Dan gone too far timewise for him to benefit from this route we are taking? 

Many thanks and sorry for War and Peace.

Hi everyone

Long time no see.  I have an update for you, and it's possibly the longest post you'll ever read, so here goes.  It's not pretty.

I've been a member here for a while but were blocked in every way from getting Dan help in Yorkshire, and are now living in Newcastle, nearer family. We've always believed Dan is on the spectrum, but have not been successful in Yorkshire at getting him diagnosed, and for years we were told that we shouldn't push the issue as he would suffer for having a "label" and that all his behaviour was normal for his age. It's not that the signs weren't there, it is that he was passed around, which is a problem in many areas. CAMHS would say it was an EP issue, EP would say it wasn't in structured classroom time that he had problems but in unstructured times so he wasn't their problem either.

You've seen a lot of Dan's history in the older post above, but some of it ties in so much I can't seperate it out, so I've had to do a full history again, adding in the new bits. 

Dan was a delayed speaker, never crawled (just got up and walked at 16 months), and had years of speech therapy. He had facial tics, scrunching his nose a lot. He would avoid eye contact and physical contact, and would bite and "freak out" when picked up or restrained in any way. He has tested as having extremely poor working memory and at one point in primary school was diagnosed with dyslexia, which was then retracted in secondary school. He was on the gifted and talented register but also on School Action Plus for social issues and his reading/writing. Dan always struggled socially and only had one friend, who was similar in nature - reserved, on the outskirts, not very good at reading others' emotions and intentions (and both were prone to being bullied/exploited as a result). 

Dan started to get very stressed by school at around the age of 9, and started to run off as we walked home. He has not worn a coat in 10 years, even in the snow or peeing rain as he can't stand the feel of them. We once had to replace a brand new sofa as he couldn't bring himself to sit on it as he hated the feel. He has not learned to swim as the noise at swimming pools was too much for him. We learned not to take him to or throw him birthday parties as being around more people than just us would result in him taking himself off to his room and shutting off. He would hold in emotions until they got to boiling point and then take himself off somewhere and curl up in foetal position and not allow people near him (he would growl and rock). Dan collected bottle tops and lego men and would get very agitated and anxious if the men weren't in position on the windowsill of his room or if the bottle tops were not in his pillowcase - how he slept with them in there I have no clue.

Fast forward to secondary school and the immediate problem was that although his IEP should have been continued, it was dropped. Dan found assertive and overtly masculine people (particularly adults/teachers) very frightening and would run away if told off by one. He was bullied but didn't really realise it - kids would tell him to do ridiculous things and he would do anything they said (including very dangerous things). The SEN at the secondary school was amazing and adamant that Dan had Asperger's or similar, but the school would not back her. Dan did get an EP initial assessment, where he refused to engage, saying "I'm fine" to everything, and was written up as having low self esteem and nothing else really.  However, the EP rang me at home and said he felt Dan had "rehearsed" the whole thing and had social issues, probably ASD.  When none of that appeared in the report, I was totally gutted - I felt like the system were preventing him from getting help on purpose.  I spoke to other parents of special needs kids at the same school and many had the same problems, and were dropping their kids out.  Dan was labelled "just a bad lad" by teaching staff, this was an issue with the entire school's attitude to SEN - wait for them to drop out. The SENCO would explain to his teachers that he had to be able to walk out at some points when he wasn't coping, but teachers would restrain him physically from doing so and he would panic like a trapped cat, and "kick off", empty threats and shouting that would get him in more bother and then he would run away (twice to another city!).  Dan was often accused of being "on something" by secondary school staff as him rocking from side to side, agitated, and flicking his hair with his hand made him look "like he's hiding something".  It didn't help that he had blood sugar problems too.  The school were refusing to help him in "unstructured" time which was his hardest part of school.  They said it wasn't their job to supervise him and he had to toughen up.  He was treated as a big of a mug by other kids, which at one point landed him in hospital when they grouped round him chanting at him to drink a swig of Jack Daniels and he drank the lot, half a litre.  He told me afterwards that he couldn't bear the chanting and just wanted them to stop.  Of course kids do stupid things and try to get out of it, but to this day he felt although he wouldn't do that now, the noise played a part.  That was the beginning of him starting to use spirits as a means to "zoning out" in social settings in particular, and he also tried marijuana twice, and had his first sexual experience (with a girl he met the day before, at 13  ).  

We felt like we were walking on eggshells at home once the hormones came in - he would always see everything as totally black and white and it was a fine line between dealing with his issues and becoming doormats.  We either worked our damnedest to keep him calm (and he was reasonable when not attending school), or spent the night dealing with the police out looking for him.  I remember desperately trying to stay on his good side and not surprise him with anything.  The other kids were suffering, seeing Dan as stealing attention away from them and getting softer treatment (he wasn't, discipline/boundaries just had to be approached/enforced differently and he'd gone way beyond them).  He often felt there was "no point" and was very low that he couldn't cope with school and with reading the intentions of other kids. He started to punch walls and himself.  He nearly got to the point of hitting us.  I was the only one who could "talk him down" from outbursts and even then it didn't always work.

He couldn't bear having his hair cut, and so began to refuse, using it to hide behind the longer it got (this is an ongoing issue) and flapping it with his hand when talking or anxious. He would cover his face with his hand when talking and would struggle with eye contact. He wouldn't wear his prescription glasses as they felt "wrong" on his face. He still doesn't, despite having pretty severe impairment. He is sadly not able to have contacts.  He would (and still does) go out inappropriately dressed for the weather.  Sometimes I would get up and he had climbed out of his window and slept in the garden (presumably after sneaking off to drink with losers). 

We knew we just had to move away for a fresh start for him, so we came to Newcastle where some of my family are.  We saw the GP soon after coming here, December 2011 and he referred Dan back to CAMHS as we felt he was depressed and still showing behaviours that we needed answers for - running away, locking himself in the bathroom and rocking, not coping with the change at all.  We knew getting him in mainstream school would be an issue and the education department suggested we send him to a Pupil Referral Unit, not as a "bad kid" but because class sizes were small and they were aware of his needs - they were happy to give him the same day to day routine of an ASD child. They were absolutely great and totally "got" him, meaning he improved vastly in school and out, but unfortunately he was assaulted by a student just outside the gates. He was so badly beaten the police said he couldn't return for his safety. So he had to go into one on one tutoring for half an hour a week in a library and his mood slipped again, although at this point he had made a stand saying he wasn't going to run away ever again.  

He had no friends and started to go into the city with his brother to meet new people, which was a well intended idea but didn't work out that way. His lack of awareness of risks got him into bother again when he brushed off his brother, accepted a drink off a "best friend" he'd only known for that afternoon, and was drugged with GHB, taken away by 3 strangers to a remote location and burned with lighters, beaten and left in a pond. 

As a result of this and obviously a culmination of the other assault and his social problems, Dan began to break down. He punched a phone box, breaking his hand, and had to have surgery to have pins in. He couldn't bear having a pot on and repeatedly removed it himself, having to have it redone three times. He felt trapped by his new decision not to run away any more (but can't ever be seen to lose!), and soon after surgery he fully broke down, locking himself in the bathroom after trashing things in the house, and attempting to pull the pins out of his hand with his teeth as he couldn't bear them any longer. We had to hospitalise him, only over night, but finally got the attention of the medical and mental health community more than any of our repeated begging. 

Dan came home to involvement from social services, the emergency mental health team, Barnados and a local runaway charity called SCARPA. CAMHS (who had still not sent us an appointment, 8 months after referral) promised they would see and assess him on the ward, but didn't, then promising an appointment within a week, which was cancelled by them after he got home. The emergency mental health/initial response team carried out a questionnaire as a first step in assessment for ASD as they felt it was blindingly obvious he had those sorts of issues. Dan got an appointment with the chief paeditrician of the local hospital who's special interest was teenage lads labelled as "bad" who might be "borderline" for certain conditions. He felt Dan has aspects of ASD, OCD and ADHD among other issues, but just "bits of everything, not enough", and felt it would be unlikely that he would get a diagnosis as he was functioning too well. He diagnosed him with reactive depression alongside these comments.  He helped us to chase up CAMHS to get proper assessments done.  No response.

Since then (last summer) Dan recovered well and gained a very small group of friends, also starting at the 14-16 provision at the local college under the oversight of the PRU he had attended. He had issues at first with attendance (mostly problems with room changes without notice which panicked Dan a lot, and the course being across 3 different campuses) but because the paediatrician put in writing that Dan had social issues, rigid and inflexible thinking, etc, he made leaps and bounds. The consultant also suggested things such as visual cues and timetables and the ability for Dan to be able to have five minutes out if he felt he needed it.  Dan stopped drinking altogether. He has had a slip in mood recently when he saw that he wasn't getting the qualifications others in mainstream school were getting. He has a tendency to obsess over certain topics for months on end, one was GCSEs and another was surrounding his strength and whether he would win a fight (both understandable but not appropriate in intensity or duration). 

I have avoided talking much about ASD with Dan as everyone kept saying not to label him. However, Dan himself feels he struggles to read other people socially and that he has issues he struggles with even when he is not low, such as crowded places, textures, making friends his own age, etc.  Dan told me how when he had to walk through a local festival, he really didn't like all the people and noise, and had to leave, and how he has learned to "zone out - like feeling stoned".  He wears earphones in class time.  He can't have anyone touch his back as it makes him feel sick and faint.  He is similar with his hair.  

Routine wise he is a bit inflexible without careful planning - he would refuse any upcoming appointment or visit from the interventions if it meant having to change his routine.  He reflects emotion - that's my term for it but what I mean is that if anyone is angry or upset, he becomes agitated and fidgety even if he himself feels he has no reason to be that way (eg. when my other two children were being "told off"). He has only allowed my sister to cut his hair and even then it was once in 18 months. He still can't wear a coat. He struggles sharing a room (as many teens do I know) and can't have anyone touch his things. He is overtly clean for a teenage boy, washing his hair twice a day and being unable to go out without doing that, even if he's going to make himself late for something. He flaps his hand in his face (elbow on lap, finger/hand running across face repeatedly) when talking to someone or when nervous, and flicks/runs his fingers through his hair with his hands repeatedly, more so (and more exaggerated) when anxious. He fidgets a lot when anxious, rocking side to side from foot to foot. He can get very righteous and angry over his black and white view of things, or be "blank" and uncooperative, but is controlling himself far more now. 

Last week we finally got his CAMHS appointment (yes, 18 months later!) and they want to immediately assess him for ASD - we did get an apology and the PMHW was lovely. I feel a bit sick about it as I was prepared for this years ago and half of me feels it's too little too late, the other half feels relieved but angry. I worry about him growing up and not coping in college and the workplace though and he wants answers. I do too but not if it's me being "over protective" as the previous team suggested. They've said that regardless of the ASD assessment route, he will be getting workshops/therapies offered now. Whether or not I can get him to engage when he shuts himself off I don't know.

I'm really sorry for the long post, I tried to cut it down. What I really need to know is whether this raises any ASD flags to any of you (I kindof think it will) and what the process is in the UK for assessing ASD at this late age - if anyone knows that is!  I am really concerned about how he has developed coping mechanisms that hide some of his issues and may mean he's overlooked even more than he was when it was more obvious. 

On a side note, Dan's cousin (my identical twin's son) has just been diagnosed with Asperger's (not formal for another fortnight) and quite severe sensory processing disorder, not sure if that's relevant as I don't know how much these things "run in families". However, her son had more obvious signs and is still in primary school.  That said, Dan's biological father (who has not been on the scene in 13 years) was thought by his childhood social workers to be on the spectrum, and I know he had several diagnoses that he wouldn't share with me in our time together.  Have things for Dan gone too far timewise for him to benefit from this route we are taking? 

Many thanks and sorry for War and Peace.