Hello - Asperger's diagnosis/school advice needed

Hi Kathy, 

have just come across your old post! It actually made me cry, I hope you have finally got things sorted with Dan and you are all happy & well... 

Sending love and positive thoughts. 

Betsy x 

Hi Kathy,

i have been reading through your posts and they are just shocking! I am so saddened that your son and you have had to go through this.It seems that he has gone so far through the system undiagnosed that if they issued a diagnosis now you could probably cause the so called professionals alot of grief!

I know you shouldn't have to do this but is there any chance you could go private for the diagnosis? I think your son must have ASD but he has coped alone for so long without the diagnosis that of course he has developed coping strategies.My son is 11 and was diagnosed with Asperger's syndrome at 10 years.We were told there was nothing wrong with him for many years,that he just had traits.They only took us seriously when he started to threaten to kill himself at 10.

You mentioned you lived in Yorkshire before you moved.We live near York.After my son's diagnosis we met other families with recent diagnoses.Ages of diagnoses varied from 3 years to 17 years though sadly the parents with the kids who weren't diagnosed until they were older had similar problems to yours.

My son has had a very bad last year at Junior school.The school haven't been supportive and he has literally been sat in the cloakroom on his own the last few weeks.This year he has refused to do any work in or out of the classroom.I am hoping he will settle down at High school but I have the feeling that it is going to be a struggle for us all despite the school being supportive and tha he is now,finally statmented.

You seem to lack any support from the people that are supposed to be helping your son,it seems like noone wants to be held accountable for him.I hope that things work out for you both.

Nicola. 

Thank you so much Noetic.  I totally agree and understand what you're saying.  We're still pushing for further testing.  If he's scoring high on the ADOS there are in my mind two possibilities - one is that his coping mechanisms are clouding the results and the other is that we're on the wrong track with our concerns about ASD.  If he is not on the spectrum we still need to know what IS causing these issues.  More than anything, Dan wants answers now.  I think half the problem is that like his consultant says, he ticks boxes for ASD, ADHD and other issues.  The consultant sees a lot of teenage lads who have been seen as the "bad lad" and who tick so many boxes but don't get a diagnosis.  He has a particular interest in it but also is very pessimistic about actually getting a diagnosis.  It's not good enough though to say they don't need one - when your child is threatening to kill himself because people take advantage and when he's getting assaulted then yes you need a diagnosis. 

Sorry to hear what you are going through, it does sound like it is not a straightforward case of ASD due to him having elements of other things also (possibly some mood disorder alongside at the very least autistic traits if not mild ASD) but what they have been fobbing you off with about "he can do eye contact so he passes the ADOS" is complete and utter cobblers - the ADOS is far more complex than just checking whether someone makes eye contact!

I know this is about a much younger child but this should give you a better idea of how the ADOS works:http://www.stuffwiththing.com/2011/02/autism-diagnostic-observation-schedule-ados/

Well it was pointless trying.  They've said he can give eye contact and describe a basic emotion so he passed the ADOS test.  I explained that Dan was punished at his old school for "being rude" by not giving eye contact so now he forces himself to do it but she said if he was on even the lowest end of the spectrum he would be unable to overcome it like that.  She had no other feedback from the test so presumably no weight was put on his total inability to make up a story and do actions.  Dan was really distressed by her saying all this which in turn upset me and I have totally let us both down by crying.  

She then went on to backtrack saying he could have that old chestnut of 'autistic tendencies' and that we can just "wait and see", which is all CAMHS have done for eight years.  She also said that he might still be autistic as it's only one test but that he doesn't need a diagnosis as he would get exactly the same treatment as if he did have a diagnosis and wouldn't have a 'label'.  All very well but what about when he leaves college or if he refuses to go back?  What about explaining to his future boss or getting him extra support, we've tried getting him help but people want proof he needs it.

I pushed for her to write down the issues we are having and she kept mentioning that PMHWs aren't qualified to do anything test wise but then went on to say she wants to see him alone.  He doesn't want that but has agreed but we all know what's coming.  She'll just keep drilling it into him that there's nothing wrong while I'm not there.  I've also asked for an appointment with the psychologist but she said she'll get back to me and after waiting over 18 months already I just don't trust that I will hear back.  Why can't they at least allocate him an OT?  If they believe no kid with ASD can give eye contact how come Dan's cousin got a diagnosis when he gives good eye contact?  Dan's just being put off and put off and that's how he ended up having a bloomin breakdown.  Noone cares and I can't find any backup to help me push for things.  I can't access ASD specific support for him without him having it,  so what exactly do they think he has? Nothing I guess.  

Well today is the day.  Feeling totally adrift so I'm just going to have to play it by ear.  I am feeling totally useless for not knowing the process for him and therefore not being able to advocate for him based on what I could or should be demanding out of his care and assessment.  This is a very big deal as he has been assaulted again and I don't know who to turn to for advice.  I mean absolutely no offence by saying if people here can't help us how can I get this right for him and get him safe. :-(

Sorry to post yet again but I'm feeling quite lost.  Dan goes back on Friday for feedback from the ADOS test but we have no idea what else to expect in the diagnosis process.  He has had a comprehensive history taken and we completed a questionaire with a mental health worker for CAMHS while he was in hospital, and now the ADOS test.  He is not in school now (he returns to college in September) so presumably classroom assessment won't be a part of it?  There doesn't seem to be much guidance online for older teens and how they are assessed so I don't know what to expect when we go back.  Thanks xx

Well no news - his case worker cancelled the appointment saying she would rearrange for this week but I haven't heard a peep from her since.  No idea what's going on, don't feel very informed on what I'm meant to be doing to be honest.  And when I don't know what they're supposed to be doing I'm not prepared to make sure he gets what he needs.  Feeling a bit left adrift yet again.  I suppose he's coped this long without them he'll just have to carry on without them.  

Hi again everyone

Dan had his ADOS test today.  He seemed pretty, well, not upset, but affected by it.   He said he feels an idiot because he didn't know how to "do the actions" for the picture story.  When I asked him what the picture story was about, he said he had no clue, something to do with flying frogs.  We joked that it was clearly a story warning about the dangers of drug use lol.  He said for his item story he got a sponge, a cube, an umbrella, and a playing card.  Not sure what the fifth was, he couldn't remember.  His story was "Spongebob and Cube sat under an umbrella and played cards".  We think it will go far as a children's story, youngsters would be amazed at the complexity and depth of the story.     

He said he told them about the things he doesn't like (noise, touch, etc) and he talked about his relationships.  He said they asked him if he knew what a friend was, he tells me he can't remember what he said.  I knew he would avoid this one as he suffered the horrendous consequences of trusting people as friends the first time he met them, and so doesn't like to think about that in him.  Don't blame him.

Anyway, I've sent him off to his college exam now and I am back home.  We see his case worker tomorrow and were told they would score the ADOS and feed back to her for that appointment.  Seems quick!  I was wondering what the scoring system works like?

Thanks

Kathy

Thanks ever so much Mum of 3 and Mary.   Mary - he has been out of that school for about 2 years,, not sure if you missed the update above?   

Kathy your story is just so similar to ours. Right from the difficult birth through being told he does not have autism and including the trouble at secondary school.  We removed our son from the school on advice from his doctor, then we got a statement, a diagnosis and a place in a special school.  It took a year and we will probably feel the backlash for years to come in terms of what it has done to his mental health.

There are so so many similar stories is breaks your heart, it it of some help though knowing you are not alone with this.

If there is a way you can legally remove your son from this school I would do it without delay.  See your GP/camhs doctors and ask for their help.

Good luck, remember it is not your fault or your sons - things will get better but you may need to very forceful and persistent with the authorities to get what your son needs. At the moment they are failing him and he is not getting a suitable education. A lot of children with ASD end up being homr educated - have you considered that?

Hi Kathy,

I'm sorry you have had such a rough time.It seems as though professionals have let you down at every level.

I am not able to tell you about diagnosis, but I think that by getting into CAMHS at last you should begin to get somewhere, and it is good that he is still school age, as apparently getting a diagnosis for an adult can be very difficult.

It does all sound like an ASD. The advice not to 'label' him, whilst well meant, is probably not helpful. ASD is a recognised disability and therefore he has some protection under the Disability Discrimination Act/ Equality Act once he has a diagnosis.

For my son, who had long realised he was 'different' it really helped because it gave him an explanation. He does not have to share that diagnosis if he chooses not to, but it has helped him understand himself (although sometimes he still says he hates AS). He is 18, diagnosed at 12.

Best wishes.

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 Kathy,

I live in Bradford too! My 11 soon to be 12 year old son was finally diagnosed last year as high functioning, aspergers. It really was a struggle to get him referred as school did not pick up and our GP made us attend 4 appointments with him before he would even refer to St Lukes.... After 12 years of age the diagnosis needs to be done at CAMHS but you should be able to demand that the School nurse refer him for testing. I am at work at the mo but if you need any further info just ask... Theresa.

Thank you Sandra, I have only just registered last night and wasn't sure how to send a post for a new topic! Have now re-posted.

Many thanks

Hello Karen

I think it would be well worth starting up a new discussion with your post above - I think you might get more people able to respond to your particular situation that way. You can do that here:

http://community.autism.org.uk/node/add/forum/1305

Also you might like to know about the Education Rights Service:

http://www.autism.org.uk/our-services/advice-and-information-services/education-rights-service.aspx

If you need any help or advice regarding education you could give them a call.

Good luck.

Sandra - mod

Hi there,

I am a parent of a 15year old boy who has been diagnosed with Asperger's Syndrome 5 months ago. Mike is a very able boy who goes to an Independent School having achieved a very high score in his entrance exam, particularly in mathematics and verbal reasoning and an average mark in English. As a result he won an academic scholarship upon admission.

Over the years Mike has struggled socially and got into trouble many times and as a result he has been labelled as disruptive and argumentative. I think it's only just sinking in for Michael that he has problems which are not anybody elses doing.

The school have been informed of the Psychiatrist's diagnosis, the Psychologists assessment and the Speech and Language Specialist's report and they are beginning to address Michael's needs. I have began the process of applying for a statement, I will find out next Friday if the application can continue. We have decided that if this is a 'no' we will appeal and obtain the assistance of a solicitor if we need to fight our corner. Can anyone offer me any personal experiences of applying for a statement this late on? Mike would like to continue into 6th Form and possibly university all being well.

Mike is at a very low point in his life and is very negative and often says 'what's the point' if a suggestion is made for anything. I have been advised by one of these specialists that a complete change of an appropriate environment is perhaps what he needs. We have thought of a residential school and have seen one on the internet which is run by a Quaker organisation in Thirst, Yorkshire. Has anyone any experience of this residential school specifically for high functioning Asperger's children or know of anywhere else to recommend.

Any information would be welcome.

Thank you

Karen 

Hi Mike,

Thanks for that, if Zoe is having problems registering you could ask her to contact me on community.manager@nas.org.uk and I'd be happy to help resolve any issues.

A friend who is having trouble getting conected to the community asked me to post this.

Hi Kathy

You can ask your GP for a referral for a diagnostic assessment - you don't have to go via the school nurse.  It sounds as if the school nurse is being quite obstructive and not helpful - you might be better to circumvent her if you can.

You may even be able to self-refer, or to have the school refer - its different in different areas but if you want to be sure what the procedure is, the person who could tell you is the Manager of the Autism Assessment Team at St Luke's Hospital tel 01274 365461

This assessment team deals with children under 12, so its no good for Dan, but they should be able to tell you the correct procedure for getting a referral for an older child.

That should get you on to the road for an autism assessment.

Re the Remove Coordinator - if Dan is at School Action Plus then the school know he has additional needs of some kind (even without a diagnosis) and its possible a case could be made that this Coordinator is not complying with his/her duties under the Equalities Act.  I agree with Mike that this person seems to have acted very unprofessionally.

It sounds as though Dan isnt getting any additional help at school and hasnt got a statement of SEN.  If you want him to be assessed for a statement then you can make what's called a parental request for statutory assessment, or ask the school to begin the statutory assessment process.  The NAS Education Advice line would be able to support you through that process.  Tel 0845 070 4002

Hope that helps

Zoe

Kathy

Your school nurse and remove coordinator are really testing my professionalism here. Best I say nothing about them and move on.

You mention your son's IEP so i guess he has a statement. If so it should give him some legal protection. If you are not getting IEPs they are in breach of statutory guidelines. If you do not hve a statement you have the right to request one and Bradford have to respond. If they refuse you have the right to appeal.

In my son's case, many years ago, Cumbria wrote to inform me that as a result of his annual review they had decided not to maintain his statement. I responded with a request for the minutes of the meeting as I had not been invited and told them I was challenging the decision. As a result he was reassessed and his special needs allowance was doubled. Sometimes you have to call their bluff.