Other parents with teenage girls

Thanks very much for the advice. I didn't really know where to start, in terms of what to look for privately.  I will definitely explore this avenue in my area. It is a good point you raised about their position in the NHS and would certainly add weight to any diagnosis. Thank you. 

It depends on the private diagnosis. Mine was done by the Consultant Psychiatrist who is the regional  NHS 'lead' (or whatever the word is) for autism.  The person in charge of NHS autism diagnosis. He does some private work on the side, as many Consultants do.   

My GP said she couldn't recommend a service but if I found one, she'd tell me whether or not it was OK.  Her reaction to this one was about as positive as it could be.  

Some private organisations are indeed rubbish and you have to be careful.  I suspect some NHS staff just don't like private service providers so they make sweeping statements like the one made to you. 

I'm not an expert and I don't need benefits but the local NHS mental health services have fully accepted my diagnosis (it was one of their bosses who did it, after all).  Might be worth investigating that a bit more in your region.

Hello,

Thanks for your reply. Is your daughter getting any support now she is at college? It seems to be a problem with late diagnosis,  getting the support put in when you need it. If we had realised earlier our daughter would have already had the appropriate things in place. As it is, I find I am chasing my tail trying to get things set up before she leaves school and (hopefully) goes onto college.  It is all very frustrating,  isn't it.  Take care.

Hi my daughter is 16 and at college .we have just gone through the same thing as you .we had a meeting with CAMHS  on Wednesday and was told the same will have to wait 2 to 3 years .she as social anxiety and now they have said she as got autism .

Hello Nikki,

Thanks for your reply. Strangely I am beginning to realise how "fortunate "(?) we have been. My daughter is no longer in mainstream school,  but attending a centre for children that can't access mainstream education for whatever reason, usually mental or physical health problems.  So her GCSE'S have already been reduced to the bare minimum, ( we are going for quality not quantity!) Things hit rock bottom all of a sudden for us I think, with my daughter having some sort of mental breakdown. So the support we got from her mainstream school was minimal, to say the least. However,  she is happy and doing well at the new centre and they are able to be flexible enough to meet her needs. The support we initially received from CAMHS was excellent.  Although we have now been referred up a tier and ironically left without regular support whilst we are on the waiting list to see a physchiastrist.

I think I have been too accepting of the situation, in the past. Like everyone does I  guess I thought these traits were just part of my daughters personality and as a family we have  adapted to accommodate her, not thinking there was anything else going on, until it all blew up

This is all new to me, so can I ask you about the EHCP. How do I apply for one? I think it would be important to have one in place before she goes to college.  But wasn't sure if she was entitled to one. 

Wishing you and your son all the best. Thank you.

Hello,

Thanks for your reply and advice. We were really lucky with our CAMHS nurse who we saw regularly for several months, I now realise how lucky we were.  I hope CAMHS works out for you. 

Are you in contact with the school SENCO? They may be able to hurry things along. 

Wishing you and your daughter all the best. 

Hello Catlover,

Thanks for the advice. It is good to know that a private diagnosis seems to open the same doors as an NHS one. To be honest I was a bit confused as to why there seems to be this reluctance to accept them. Certainly both my GP and CAMHS advised that it (a private diagnosis) would hold little to no weight. That I can understand if I just get some quack of the Internet, but as you say you need to do your research, which I would. Also, good point about diagnosing females, I will look out for that. Thanks.

Hi my son has Aspergers and routinely struggles to go to his secondary school which he just started. We saw a psychiatrist privately who advised that we request the school to drop a few subjects and focus on just 6-7 subjects to reduce the stress overload. He explained that as the stress levels increase, mental health deteriorates and sensory issues tend to aggravate. My son's social abilities have been impacted badly. We cannot have visitors at home, if we do he'll hide in his bedroom.

I am not a professional but based on my son's experience I would say that you could - 1) Try reducing the number of GCSEs and stick to the core and couple more aiming for 6-7 instead of 10. 

2) Please keep calling CAMHS every week, and tell them how bad the situation is. CAMHS only give priority to cases where they are suicidal or want to harm others, or have already attempted something causing danger to life. So in essence, you need to portray your case as grave to be seen quickly. Also ask the school to contact CAMHS, for you. It always help when schools put pressure.

3) If you are able to, then you should and see a private psychologist for some CBT. But make sure you choose the right one. There are many out there, but not all are as good.  Also getting a diagnosis helps people to understand that your daughter's problems are real not made up. ( Although you will find many who will not acknowledge the problems that autistic kids face, just because they look and behave normally)

4) Finally please apply for an EHCP which will help you daughter get some support at school, if they school aren't very helpful. She would definite;y need to be given extra time in exams and a separate room if being in a big hall full of students causes anxiety.  It helps greatly with EHCP applications if CAMHS write in their report about the need for EHCP; it helped greatly in my son's case.

I can imagine how stressful all this would be for you especially during GCSEs. Please do look after yourself. xx

I have a 13 year old daughter and I've got her on waiting list for pediatricians for assessment for ASD and Shes had about 4/5 referrals to CAHMS for them just kept discharging her and she was self harming and has been getting worse she also struggles with serve anxiety and depression but finally we got her on a waiting list with CAHMS now its just waiting now....she struggles with school everyday doesn't like going in and struggles with her social and communication teacher see her as a rude child and angry but that's her and her additional needs. my daughter thinks everyone is against her and talking about her she shuts down doesn't like opening up to anyone. two of her other siblings have ASD and ADHD.

Just keep fighting you know your child better than anyone else. here if you need anything x

I couldn’t get anyone to listen or help my daughter between the age of 11 and 15. She finally got an NHS referral, had her assessment, and didn’t get diagnosed with anything!

A year or more later I paid for her to go private. We came out with 3 diagnoses. It was the best thing I could have done for her. It doesn’t affect anything at all. She’s let her GP have a copy of her report, and has just started a PIP claim. She can book herself onto any NHS mental health service or access any help that may be available. The NHS treat one thing only, so should she need medication for her ADHD for example, she will have to register and be referred to that department and wait. Or, go private again for faster support. 

Yes it’s expensive, but that’s obviously the case, since it isn’t free like the NHS. You pay for what you get in my opinion. I could barely afford jt, and aim now paying for my own assessment., but needs must. Don’t be out off. Just do your research. You want some one who has experience of diagnosing  children, and females. Someone with qualifications in ASD or a special interest. You also want to be paying one fee for the whole process from start to finish. 

Hello Lou, thanks so much for your reply, it is indeed very helpful.  You have confirmed what I was beginning to think regarding the private diagnosis.  It would be helpful all round just to know what we are dealing with.  Knowledge is power after all! I know going privately will be expensive but as you say it effects daily life. I am particularly keen for a diagnosis as there is talk of medicating my daughter for her anxiety. How you can treat someone without the full picture concerns me. 

It is reassuring to hear how you have accepted and moved on with your diagnosis.  Thank you again, your reply meant a lot.

Hello,
I don't know whether I can be of much help,
However I was in a very similar position 3 years ago.
When I was 14 I had been referred to a psychologist for anxiety and they (alongside me and my parents) had notices many autistic traits in my behaviour...

We were told that the wait for a diagnosis (in our area) was anywhere from 18 months to 3-4 years, and we're also made aware that if we went privately then the diagnosis could possibly still not aid in accessing services.

However, we decided to go privately as the wait a diagnosis would mean that I would be out of education by the time that I had received it. As well as this, personally I just really needed to know ASAP whether I was autistic or not, as I was really struggling to cope with the fact that I didn't know why I acted certain ways, or was made extremely anxious by change.

Honestly, it was the best decision for us to go privately. I think the whole process from being put on the list to get a private diagnosis and actually receiving the diagnosis was around 2 months. I had 4 assessment dates and they made a very detailed report which allowed both me, my parents and the school to understand me better. As well as this, they were also able to pick up on different sensory processing difficulties that I was experiencing as well as give me a separate diagnosis of dyspraxia...

Although we had been warned that the private diagnosis may not be viewed as valid as a NHS diagnosis, and we may not be able to access services, we found that this was not the case. We took the report to our local gp, which said that I had been given a diagnosis of autism and they added it to my medical records and referred us to an occupational therapist (as the report had recommended that I see them). The school have also been able to support more since the diagnosis. The teachers have been able to put different measures into place which have supported me. However most of all I was able to start to understand myself more - which I think was really really important.

I think a lot of support  is definitely tailored for for younger children; I have found that sadly, especially in my area, there is little to no support for teens with autism. For me it has been very much a journey of accepting my diagnosis, as well as managing the impacts of the the fact it was so late. 

But I think getting my diagnosis quickly was the door to beginning to accept my diagnosis, learning how to cope and ensuring that my mental/emotional/physical health wasn't hurt any more by the fact that I didn't have a diagnosis for a condition which was affecting me daily.

If you can get a private diagnosis (as I understand they are extremely expensive, and there is the worry that it will have no weight in accessing services) then I would highly recommend it.
I really hope that you are able to find the support that you need. I am also more than happy to answer any questions you may have.