Convinced but can't get diagnosis

My son has been under CAHMS since September and because they were dragging their heels with getting him assessed I took him to a private child psychologist out of my local area. The psychologist aslo works for CAHMS in another area. Since his diagnosis CAHMS have refused to agree with his diagnosis even though his has only been seen once since a new chap has taken him on. I did question this chap's qualifications and he got very shirty with me. I have a feeling he is still at college part of the time. What I am trying to say is that you might be better off going for a private assessment which will be quicker than going via CAHMS. My son has also been seeing a private counsellor who also backs up the ASD assessment. My son also has an ed psych report saying he is exceptionally bright and I get the impression from my research that he is using his intelligence to mask and overcome some of his ASD difficulties. Although anxiety and social stuff is harder to hide now that he is a teenager. I hope this makes sense. I am at the beginning of the post diagnosis journey and still have no idea what support my son will get from his school etc. 

I'm so low just now and I can't seem to shake the Black Dog that's following me.
The stream of appointments and juggling the responsibilities for the boys seems never ending. I'm desperate for the end to their academic year and some respite from the strain of getting all to their respective destinations.
However, What for their future? Few jobs available in the area and none of them Autism friendly it seems.
One of my boys has done voluntary work for a few companies for work experience and in the hope that something more comes of it, but nothing presents itself and one 'prospective employer' really took advantage, yet because of my sons disability, he's unable to see it.
I was toying with the idea that we could go to Jobcentre Plus for advice, but reading the recent experiences had by those with autism, makes me shiver at the thought.

'Quote from National Autistic Society'
Only 15% of people with autism are in full time employment, despite the fact that 79% of people with autism on out of work benefits want to work. We want to make sure that the all job seekers with autism, including Asperger syndrome receive effective support to secure meaningful employment.
Too many people are telling us that they are not happy with the access to, and services provided by, their local Job Centre Plus and employment support programmes.

“When I went to the Job Centre and asked to be put on to a disability advisor. The person I spoke with was not helpful at all. She just looked at me with a shocked expression and said “you’ve got autism?!” in a loud and disbelieving voice.” Job seeker with autism 

I know my boys have something to offer, but with every door slammed in their face, and employers taking advantage of those desperate for experience, what do you do?
I don't want them to have to sign on this Summer, but what other option is their?

I'm either juggling with their everyday needs or consumed with worry for their future. I'm pretty sure I need to step back and take a break, but i can't sit back and let them loose hope. I struggling here with the lack of provision for post 16. No one wants to help and ConneXions have all, but abandoned my lad who is extremely anxious and having regular meltdowns at the moment.

I'm running out of fight and so terribly low. 

That's a statement of special educational needs.  I don't know if you have them in Scotland...they call us the United Kingdom but there are different rules in different bits!

Sorry you had to deal with your daughter escaping, that must have been awful.

I Googled some Scottish info for you which might help:

http://www.scotland.gov.uk/Publications/2004/02/19009/33932

http://www.goodschoolsguide.co.uk/help-and-advice/special-needs-advice/sen-law-and-you/90/sen-and-scottish-law

http://www.equalityhumanrights.com/advice-and-guidance/before-the-equality-act/guidance-for-students-pre-october-2010/getting-into-education/the-right-to-an-effective-education-and-support-for-children-with-disabilites-or-special-educational/

http://www.scotedreview.org.uk/pdf/122.pdf

http://www.netdoctor.co.uk/adhd/yourchildslegalrights.htm (according to this link it might be called a record of needs in Scotland).

http://www.autism.org.uk/global/content/search%20results.aspx?q=scotland (various NAS links about Scotland, might have useful stuff).

BTW, I can't believe they told you 8yo was too young for an accurate diagnosis, that is a load of BS.  There are toddlers aged under 2 years being diagnosed!

Thanks for your reply intense world.  I am sorry but I don't know what that statement you talk about is.  Is that NHS guideline also applicable in Scotland.  Just had the police here as my daughter decided to just go off out without telling us! Seriously considering going for the jugular with all the authorities as we are struggling to cope now.

You have every right to request a specific assessment for ASC with CAMHS or an appropriate centre.  NHS NICE Guidelines state the child has to be assessed within 3 months of referral.  You can likely self-refer.  Just be specific that you want an ASC assessment and make it clear you know your rights.  Your daughter desperately needs a diagnosis to access support.  Apply for a statement of SEN if she doesn't have one.  You can do all this yourself, don't be fobbed off and you don't need teachers or other professionals to give you permission.

I also have a daughter who is currently waiting (after almost a year) to see CAMHS.

She is now 12 and her behaviour is almost out of control.  I had her at CAMHS when she was 8 because I went to the doctors with my concerns about her then.  After a few appointments, they told me that she was too young for them to get an accurate diagnosis, so we just got on with things.  However, last year, my daughter's school called me in for a meeting to discuss her rapidly declining behaviour and asked me if it was ok to refer her to various "professionals" for help with her behaviour. As you can imagine, I was delighted to agree to this!

We are now a year on, her behaviour in school has gotten so bad that she has been excluded once already.  She runs away from class if she feels angry or threatened, bangs her head off things or pulls her hair and shouts back at the teachers.  Despite being exceptionally bright, she is refusing to do tasks set out for her, and often destroying any work she does do.

At home, she will just refuse to do anything - I have to set out her clothes, direct her to get washed/dressed etc or she just wouldnt.  She has no organisational skills at all, has no concept of personal hygiene, and has no social skills.  She is becoming more and more aggressive and will run away from home or hurt herself if you say anything she doesnt like. 

She has been assigned a key worker from Social Work who is supposed to be supporting her and our family too.  On her first visit, after meeting me and my husband and son, she told us that there wasn't much she could do for us as she wasn't trained to deal with any mental health issues, but would we like parenting classes!!!

Having now had several meetings with the school and key worker, we are still no further forward, I have been told that my daughter may not be seen by CAMHS by June and she is supposed to go to high school this year.  I know for a fact that she is not going to cope, and even the school are starting to agree.  When I try to chase up CAMHS, I feel that I am being given the "Cover Our Asses" excuses, and I am at my wits end.  I feel that everyone is losing sight of the fact that I have a very scared and confused daughter that can't control her emotions, and is a danger to herself at the moment. 

I am sorry for rattling on, but if anyone has any suggestions on anything that we can do, I would be really grateful.

:)

Stand by your rights and challenge them.  They will fob you off if they can.  Read up on autism in females and make your case.  Insist on a referral to a specialist in assessing girls with autism, not a general CAMHS psychologist.  I think you are likely to be right that she has ASC from what you said.

http://www.autism.org.uk/about-autism/autism-and-asperger-syndrome-an-introduction/gender-and-autism/women-and-girls-on-the-autism-spectrum.aspx

If your son is diagnosed this is proof of your daughter's genetic risk (also in those NHS NICE Guidelines above and which you can quote to doubting clinicians).

My son is 22 and its taken me 20 years to get a referral for autism, I also believe my daughter of 16 has alot of the same traits, I'm not sure if she is autistic or bipolar, but what I do know is that a girl of 15 being diagnosed with, anxiety, depression, school phobia, eating disorder, ocd and self harming and has been referred to camhs 4 times since aged 6, has a root problem that is being ignored by the health professionals.  

http://www.nice.org.uk/nicemedia/live/13572/56428/56428.pdf

1.5.9 If there are discrepancies during the autism diagnostic assessment between reported signs or symptoms and the findings of the autism observation in the clinical setting, consider:

• gathering additional information from other sources and/or

• carrying out further autism specific observations in different settings, such as the school, nursery, other social setting or at home.

1.6.2 If any of the following apply after assessment, consider obtaining a second opinion (including referral to a specialised tertiary autism team if necessary):

• continued uncertainty about the diagnosis

• disagreement about the diagnosis within the autism team

• disagreement with parents or carers or, if appropriate, the child or young person, about the diagnosis

• a lack of local access to particular skills and competencies needed to reach a diagnosis in a child or young person who has a complex coexisting condition, such as a severe sensory or motor impairment or mental health problem

• a lack of response as expected to any therapeutic interventions provided to the child or young person.

The above, whilst not law as such is NHS recommendations which really ought to be followed and they would (or should) be embarrassed to be caught out not following them.

Appended to add: when our CAMHS failed to diagnose my eldest, I insisted on a referral onwards.  Later I will try to dig out the NHS NICE Guidelines that states they must refer onwards if the case is complex or there is uncertainty.  Even if they claim not to be uncertain, you are entitled to ask for a 2nd opinion on the NHS.  I presented a case to the funding panel by email, and it was an overwhelming case.  The arrogance of our CAMHS, was that they claimed in a subsequent report regarding the 2nd opinion, that "this service is currently assessing..." when it was nothing to do with them it was all my hard work!

Hotel california said:

There is a lady on this forum, IntenseWorld, who is a fountain of knowledge on statementing and your rights, so hopefully she will get back to you on this.

If you are going to get a statement you have to do it quickly.. there is a little known clause in the statementing process that says that they do not give statements from Year 9 onwards.  My LEA  dragged it's heels when I applied and I asked if they were doing so because of this clause, which would have got them off the hook.  My sons statement came through two weeks later.  Check if this clause is there and if so make sure they know you are aware of it and your concerns about it being used.

 thank you!  You however have one up on me, as I hadn't heard about that clause.  It's always a learning curve, even for those of us who seem well-informed!

Your daughter sounds so much like mine.  She is 12.5yo and was equally resistant to the idea of a diagnosis for exactly the same reasons, and she is also tested as very superior.

Our local CAMHS failed to diagnose her, I pushed for a second opinion which was done out of area.  They did a slightly better job but even so gave her the wrong DX (PDD Other) instead of the Asperger's she has.  I have not told her about her diagnosis and don't know when I will be able to, because of her attitude, the same as your daughter.  How I got her to go to the 2nd opinion assessment was, she was desperately unhappy at secondary school and having severe meltdowns and anxiety as well as self-harm.  I told her we were going to see some people who could help her with her school problems (which wasn't a lie).  She knew her school were refusing to accept she was having problems for the same reasons your daughter had.  So she knew we needed proof.  Otherwise I don't know how I would have got her to go for the assessment as she isn't far off my size and you cannot drag an unwilling adolescent onto a train out of town.

I have a suggestion.  My daughter is really into the geek theme.  She has been reading some books called "Geek girl" and the girl in it has very Aspie traits.  My daughter has noticed how like her the character is.  If you get your daughter to read those books (there are two in the series I think) she may well identify, then talk to her about Asperger's being called the "Geek syndrome" and all the positives about it.  http://www.escapistmagazine.com/videos/view/escapist-expo/8286-The-Geek-Syndrome-Aspergers-in-the-21st-Century

Geeks are cool at the moment.  Apparently all the children at school are wearing the thick-rimmed geek-style glasses.

I am horrified by the ignorance of the clinicians you have seen, but sadly this is not uncommon (been victims ourselves).  I have Asperger's too and the state failed me in two assessments, I was diagnosed privately.  The problem is that they just don't get the female presentation, and we need to battle this to get the awareness out there.

Both my sons have ASC and suffer from anxiety.  The eldest not so much now as he has more control over his life now, in the sense that he has found "safe" places to go where he is accepted, it is only unfamiliar places / events that trigger his anxiety.

The youngest however has huge anxiety, which he expresses both at school and at home.  Like your daughter, my son was asked to keep a diary of his moods.  He refused to do this and I agreed that for someone who already has anxiety, writing down negative feelings just compounds the problem.  I told the Ed Psych this and she said that it was really designed for younger children (what!!).

Anyway, even without a statement there are things that you can do to support your child.  Schools can and do offer extra time in exams, quiet places for lunch and break times and the use of computers (if children work better using computers) in class.  I know of two children at my sons school who have these provisions even without a statement.

There is a lady on this forum, IntenseWorld, who is a fountain of knowledge on statementing and your rights, so hopefully she will get back to you on this.

If you are going to get a statement you have to do it quickly.. there is a little known clause in the statementing process that says that they do not give statements from Year 9 onwards.  My LEA  dragged it's heels when I applied and I asked if they were doing so because of this clause, which would have got them off the hook.  My sons statement came through two weeks later.  Check if this clause is there and if so make sure they know you are aware of it and your concerns about it being used. 

Good luck.