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Old 06-10-2013, 11:43 AM #1
KathyUK KathyUK is offline
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10 yr Member
KathyUK KathyUK is offline
Member
 
Join Date: Feb 2013
Posts: 151
10 yr Member
Default Diagnosing older teens - UK

Hi everyone

I've been a member here for a while for me (totally unrelated to this) but thought I'd make use of this bit for some info for my son who is 16. We've always believed Dan is on the spectrum, but have not been successful in our previous locality 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.

Dan was born quite early (planned section) and as a result had collapsed lungs/respiratory distress syndrome and related issues, including ketotic hypoglycaemia, and repeated episodes of tachycardia and bradycardia throughout his childhood. The tachycardia has continued and is under investigation. These episodes can tie in with meltdowns and at first were written off as panic attacks until they saw his heart rate was over 140 and that sometimes they came on without obvious stressors. He was 6ft1" by 15 and is still growing, but is skinny and athletic. His metabolism is like a racehorse and he eats similar amounts to one lol.

So that's his physical health done. 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 was "just a bad lad", this was an issue with many special needs kids at that school and most ended up leaving. The SEN 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!).

We felt like we were walking on eggshells at home once he hit 13 and the hormones came in - he would see everything as totally black and white and it was a fine line between dealing with his issues and becoming doormats. He felt there was "no point" and was very low that he couldn't cope with school and with reading the intentions of other kids. 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 when 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.

The manipulation by bullies escalated to dangerous proportions and his school attendance and trust disintegrated so much we had to move away. We knew getting him in mainstream school would be an issue and given our lack of help on the mental health side of things, 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 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 matured beyond running away.

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, 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 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 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 and ADHD among other issues, but also 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.

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. 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. 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 late to meet others. He flaps his hands in his face when talking to someone new or when nervous, and flicks his hair with his hands repeatedly when agitated even slightly. He fidgets a lot when anxious. 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 and they want to immediately assess him for ASD. 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. 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!

On a side note, Dan's cousin (my identical twin's son) is in the process of getting his formal diagnosis of autism and they've warned my sister to expect a "more serious" sensory disorder diagnosis too, not sure if that's relevant. However, her son had more obvious signs and is still in primary school. 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.
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Old 06-10-2013, 11:10 PM #2
Sweets Sweets is offline
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Join Date: Jun 2013
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10 yr Member
Sweets Sweets is offline
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Join Date: Jun 2013
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Heart some advice, not so much answers...

I think opening the door to your son about having some sort of autism spectrum disorder would be extremely benneficial to him.

Considering he is "higher functioning" according to his teachers/doctors/etc. he should be able to relate to other people and their expereinces.

If your son is able to meet people on the spectrum, whether in a in group session or a forum on the internet, I hink he will be better able to understand himself and be a bit more aware to what is going on and what he can do for himself.

From what I know about ASD, and the symptoms I show as well as the more prominet symptoms family members show, it definitely sounds like ASD. Granted, it sounds like other issues are going on at the same time like maybe anxiety and/or mood (not to mention physical) but it sounds like the underlysing issue is ASD. Which most teens/young adults present as a "bad lad" as higher functioning people because they are so widely misunderstood and overlooked.

I don't have a lot of answers, but I can say I understand and think you are doing the right thing about looking for answers and treatment. Although I do think you should include your son on the issues.

Best regards,
Sweets
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"Thanks for this!" says:
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