What is even the point of diagnosis??!!!

Hi Pink Pixie,

 I've just put together some advice for a fellow forum follower which you may also find useful, re: statements.

community.autism.org.uk/.../help-please-newly-diagnosed-behavioural-issues

I hope you don't mind but I've suggested you read each others threads as it seems you have a few issues in common. As Socks says, I have been through the mill re: support for my boys.

Although my Ed Psych acknowledges my case was somewhat unique, it did also highlights what can happen when a parent is not naturally assertive and the lengths I had to go to to get the correct support for my sons.

Tribununal wrote a damming report about my LA and the Schools poor SEN policy. My Ed Psych said in 40 years of work in his field he'd never seen such a poor miscarrage of justice concerning a childs needs. We were advised to sue, but frankly I couldn't face it. All we wanted was what was right for the child!

Sadly, you will have to be firm. Like you, I was also very angry, but I chaneled that into getting the right support for my boys.

Take Care

Coogybear

Recombinantsocks- I realy think I've left it too late to move him. That's why I'm working so hard to make his college life easier x I dont like all this fighting that's thrust upon me :( what a dreadful system eh :(

Coogybear you are a rock- thank you. I really needed to let some of this steam go as Im Enormously frustrated. And angry with myself that I'm not stronger. And upset that not only does my boy have to deal with asd but that I now have to fight for simple help for him. It's a ridiculous and very broken system. I'm not a good shouter - hence him being year 11 and on,y just being recognised by the education system :(

Hi All,

 The trouble with CAHM's is that they are severely under resourced and the waiting times are huge. When a child; or even an adult for that matter, has a mental health issue, it needs addressing in a timely manner, not months down the line. I also know this from bitter personal experience. If you are able to finance outside input then do consider it. I couldn't for myself and it did add up to a protracted recovery in my personal experience.

Subsequently, I've found an excellent councellor whom I trust and this time around I've found I've made a more meaningful recovery from my depression, but obviously we are all individual and heal at different rates.

Both my boys are extremely high functioning, but have pretty poor executive function, which makes everyday living quite difficult. One also has stress related illness (Severe Migraines,) which totally incapacitate him and add up to a significant amount of time off college. The other has a dignosed sleep disorder and night terrors. This means I've had to centre my life around their care and work part time from home to ensure i'm their for them both. (no employer would employ me with such unpredictable demands.)

I'm affraid those with high functioning Autism are fairly commonly acknowledged as slipping through the net and most of any support I've encountered is largely parent driven.

If money was no object, I'd love to set up a centre to support such cases, but that's just a pipe dream I guess.

One of my sons did an ASDAN course on independance whilst on day release from School, but struggled greatly with managing his own finances. I hunted high and low for tailored support for this, but with little success. By the time my local Autism hub got around to organising courses, they were on a similar premise to ASDAN, not targeted support on one subject, so I opted to teach him myself using an NAS resource. It's felt like the blind leading the blind most of the time, but we are getting there.

Don't feel bad about off-loading here. Sadly, your predicament is one frequently featured on the forum. Their are many willing to help or just even lend a listening ear, when things get fraught.

It's up to you if you decided to apply for DLA, but again you will need to fill in forms and probably support it with a case statement of his needs. We have found it invaluable to ensure my sons safety. (One lad was assaulted on public transport, and struggles traveling due to extreme anxiety.) This expenditure is huge, but now he has access to college, which may otherwise have been beyond our means.

If I can help with any info; I will try, Just ask. Can't help much with form filling though I'm afraid, as that is my true achillies heel. When I was looking at statement writing I got help from IPSEA. A Lawyer helped me draft the statement for Tribunal, I'm not sure if the do the same for FE etc, but it maybe worth asking.

The key to statement writing, I was told, was to pick out the key terms and statements in the documents supplied by proffessionals in support of your outline. Hope thats of help.

Take care,

Coogybear

Agree with what others have said. Coogy has been through this mill so she know's a lot of stuff.

ThePinkPixie said:

Right now my son gets nothing. The school refused to see a problem until the new senco was employed. Then from her employment to my sons diagnosis was a mere 3 months!!! That was this October . Shes good but I still feel very guarded. He IS very capable BUT he is autistic and he needs support. Socially and with his independance.

Other schools are available. There are mainstream schools that have special support units for autisitic children. (these have a particular name but it escapes me for the moment) It sounds as though his current school isn't very aware of the issues so it could be time to move him.

www.autism.org.uk/.../choosing-a-school-in-england.aspx

My other comment is it may be worth going back to CAMHS again with less british reserve and more emotion and desparation (and a box of tissues?) Situations and circumstances change and they won't have said thaat they will never help.

Sorry, wow, I had no idea they changed that! I did Year 12 and then quit and went to college instead. Not heard a thing about it.

Good luck to you both.

Right now my son gets nothing. The school refused to see a problem until the new senco was employed. Then from her employment to my sons diagnosis was a mere 3 months!!! That was this October . Shes good but I still feel very guarded. He IS very capable BUT he is autistic and he needs support. Socially and with his independance.

Coogbear that's loads of information which I will read and ingest tomorrow. Tonight I'm just glad for a place to release some of this bad feeling and feel s little more supported. Thank you xxx sincerely x 

I forgot to ask, Does your son get DLA?

If so, you can use it toward private therapy with an Autism Aware councellor. I had to do this for my son when CAHMs sessions were unproductive. Turned out it was money well spent as he learned way more coping strategies. Additionally, CAHMs often only offer a set number of sessions. My experience is that every individual heals at a different rate and few heal to a prescibed time.Worth considering, if you feel he needs it.

Do ask if I can be of any further support

Coogy

Hi Pink Pixie,

  Can I ask does your son have a statement? Because of his age (It's quite a late stage diagnosis.) I'm not sure you would have had the time to get one. Statements; (Now replaced by the EHC Plans) run out at age 16 in any case. From then, they would normally have moved to MOAP's (Moving On Action Plans.) If the college he intends to move to is a good one, with Autism Awareness and a good SEN Dept they may follow a MOAP to the letter if he has an existing statement. The trouble with MOAP's is they are not legally binding, unlike Statements.

Do you have ConneXions involved with you son or operating in your area? I know finding has been cut very dramatically.

ConneXtions normally work with any child with SEN and stay with that child until about 25 I think.

My experience of the deliverance of MOAP's has been a real mixed bag, sadly. I have two sons on the spectrum in the same School year, who went to two separate colleges. One is doing A levels, the other level three BTEC.

One College embraced the MOAP and once they realized the level of progress he made with the correct intervention they took him more seriously. He's now and ambassodor for Autism at the college, mentoring other students on the spectrum through integration and transition sessions. He also helps staff with Autism Awareness training.

My other son was less fortunate. His college provided nothing on the MOAP and ended up dropping him down a level to compensate for their lack of support. Obviously, this was not a level commensurate with his intellegence and he quickly lost heart. When we challenged this lack of support, it got very serious. He ended up leaving after they made him sit down and sign 40 signatures next to support he was alledged to have received, but never did. Despicable behaviour to cover their backs.

With the law having changed in Sept, which I gather tightens the obligations on Colleges to adhere to MOAP's, things may be better now, I'm not sure.

Can I suggest you write a case statement. It needs to be written objectively and almost like a legal document. This will be a statement from yourself on all aspects on your sons difficulties. From sensory to social and any other learning difficulties he has either educationally or physically. Include any illness he suffers, stress triggers, food allergies, the works. This will make grim reading on the face of it, but by looking at his difficulties in their entirity it will allow a good SEN officer to work on strategies to help him in College. These could include addtional study time, fewer subjects to study to keep stress levels down. Assistive software if it's necessary, key support workers, the list goes on. 

When you are sure you have it all down, this document can be given to ConneXtions and his SEN officer so they are all singing from the same hymn sheet. Aside of not having to repeat yourself over and over it also prevents you from forgeting aspects in various meetings. Any intervention can be adapted from it and changed as and when necessary. As your sons confidence, grows things can be changed or adapted.

The diagnosis your son has is proof enough. What is probably required is a statement on his specific needs. After all, with a spectrun disorder no two students experience the same difficulties.

Your School experience may have been bad, but hopefully the college experience will be much better. Do visit the colleges well in advance. Ask Colleges for transition days so your son can adjust to the changes. Ask for copies of their SEN policy and what's available for those with ASD. If you get the balance right it can make a huge impact on his overall wellbeing.

Resistance to change is common and a natural fear reaction to changes in routine, environment and peer groups. Be patient and encourage him to embrace the prospect by exposing him to the environments and helping him to familiarize himself with it all. He will have off days, but then who doesn't!

I've been in your shoes and feel your angst, but trust me things do get better.

I strongly advise you get in touch with IPSEA also. They will have a much clearer understanding of the current system of EHC and may even be able to advise you of what options are available in your area.

https://www.ipsea.org.uk/

Your son is likely to take longer than most to settle into College. Be prepared for that, but above all remember that the diagnosis is just the starting point of his journey. Diagnosis can be a very positive thing, but as individuals we are much more than just a diagnosis. Focusing on his difficulties to get the correct support is just one element. Happiness and wellbeing should be focused on equally and their is good evidence to suggest that those that follow their dreams and gifted tallents find their own way with time.

Good luck

Coogybear

I spoke to camhs last year and we're just coping too well for help :( I just wish they knew the truth of how well we cope sometimes) x my mothers protective gene is just a little too strong I guess.  We'll get through it, we always do, but I just wish this diagnosis meant a little of the pressure was off me. It isn't. I'll Get over it .... 

That's what I began to remember when you said it was compulsory. Have you thought about getting help from  CAMHS?

The law just changed in the uk- this is the first year that year 11 MUST do years 12 and 13 :( the timing for us is dreadful :( any idea what I can do?!

Sorry, I read your comment about him being adamant that he doesn't want to go to college as him not wanting to go on to further or higher education after his current school. I wasn't thinking of the latest changes in school leaving age.

What country are you in? It was my understanding that GCSE refers to the UK, I'm aware though that in different countries "college" refers to different stages of education. In the UK "college" is voluntary education rather than a legal requirement, compulsory education ending after the completion of GCSEs. While college is, from an educational viewpoint, recommended I'm not sure where on the earth it is a legal issue. In the UK you also don't have to start college immediately after finishing compulsory education either, perhaps you could defer a year? Although stopping education may make it difficult to start it again.

I'm not packing him off to college... its the law :(

Ruby's experience is really positive and demonstrates that diagnosis can be really useful.

Although ASD isn't an illlness, he may benefit from guidance and counselling assistance from CAMHS services. These are obtained through the health service rather than through the education system. Speak to your GP about your concerns.

What does he think about his difficulties? Does he want to be more social and independent?

Packing him off to college, before some of these difficulties are addressed, may make the situation worse so I would not push him too haard in that direction for the moment.

I don't think I'm going to be much help, but I'm 18 and my diagnosis was important because it got me extra time in exams and a room to myself. This was really important in helping me pass my exams because I get really stressed when my brain goes blank and I can't read it properly so when I have extra time I have time to calm down and try and get the right answer, and I get less distracted and anxious because there's no one making noise or moving when I'm in a room on my own. The doctor who diagnosed me did a report to say where my difficulties were, I don't know how this works for everyone but is it possible to get a copy of that report for your son's school so that they know and can pass the information on to colleges? My mum found that getting support from school was really difficult too, for me and for two of my other brothers who are also autistic.

I hope things get better for you and your son