Published on 12, July, 2020
Hi everyone. I am new here, as I was unsure where else to turn for help with this particular problem. I have fairly recently been diagnosed with Aspergers, on top of ADHD, Tourettes and various anxiety disorders. In total my diagnosis took approximatley 7 years. I am not here to talk about myself, however.
I feel that it is likely my brother also has Aspergers or is somewhere else on the spectrum. We are very similar in many ways. He is going through a very difficult time at the moment. He has a new girlfriend, his first full-time job and my mother just got married. (As he still lives at home this effects him.)
Last night he was arrested for breaching the peace. He had a huge meltdown and threatened to kill himself, also accidentally hitting a police officer whilst flailing around. He was put in a cell overnight, and was released this morning with a caution.
I feel that his meltdown was most likely due to the high amount of stress he is under, and the anti-depressants he has been prescribed. He consulted his GP last week to ask for help with possible Autism etc. and mentioned my situation, but was brushed off as 'stressed' and his anti-depressant dose increased.
Since my diagnosis I have found my life much improved, and feel that the same thing would help him. However, it is clear that he cannot wait 7 years! I was wondering if anyone had any advice on how to accelerate getting a diagnosis for him as it has become very urgent. Is it possible to contact the clinic that diagnosed me directly, and ask for a consultation without a referal as we are related?
I also think he will have to reduce his hours at work. Could anyone advise regarding how to achieve this? I am currently unable to work after 10 years of burning myself out, and would like to avoid the same fate for him.
In addition, I wondered if anyone could help me with dealing with my mother. She believes that diagnosis gives one an excuse not to work hard etc. and is now threatening to kick him out of the house in an act of 'tough love.' She feels that the independance would be good for him, but I know that when she did the same to me it triggered multiple breakdowns and helped to put me in my current position.
I apologise for the length of this post and any irrelevancies therein. Thank you in advance for any help.
Print it out and fax/send it to the GP. If it's in writing he cannot ignore it. Place your referral request in writing too. Contact your local Healthwatch organisation and they can contact the GP on your behalf.
Unfortunatley, I have read through all of this previously and it is of little help in this senario. The GP was informed about the Autism Act, but simply disregarded it. I am not entierly sure that he was clear on what was being said to him. We are contacting PALS to lodge a complaint, but I don't know what to do in the meantime. It's a small surgery, and my brother has a full time job, so he cannot see another doctor. (They are fully booked for the inevitable future.) Is there any other route for urgent diagnoses? For example, by speaking to the clinic that diagnosed me directly?
http://www.autism.org.uk/about-autism/all-about-diagnosis/diagnosis-information-for-adults/how-do-i-get-a-diagnosis.aspx
What if my GP does not refer me?
If your GP decides not to refer you for a diagnosis, ask for the reason why. If you don't feel comfortable discussing their decision then and there, you can ask for a second appointment to talk it through.
There is a complaints procedure you can follow. See Local authority and NHS complaints procedure on our website, or call our Autism Helpline on 0808 800 4104 to ask for a printed copy. You can contact your local Patient's Advice Liaison Service (PALS) or the Independent Complaints Advocacy Service (ICAS) who can help to support you to make a complaint.
The law and guidelines
The Autism Act 2009 led to the government producing statutory guidance for adults with autism, which is called the ‘autism strategy’ (published in December 2010). This means that local authorities must have a clear pathway of diagnosis for adults. Wherever you live, you should be able to have a diagnostic assessment and your GP or local authority should be able to tell you how you can get this assessment.
It may be worth letting your GP know that you are aware of this legislation. If your GP does not want to refer you for an assessment you could show them our information about diagnosis and the Autism Act to challenge their decision. There is more information about the autism strategy on our website, here: http://www.autism.org.uk/autismstrategy.
The process of diagnosis will vary depending on where you live. There isn’t one standard way for an assessment to be carried out, but there are guidelines that professionals should be following such as those issued by the National Institute for Health and Clinical Excellence (NICE). You can read the NICE guidelines on the NICE website: http://www.nice.org.uk/CG142
What if I want to complain about the service I have received?
If you wish to complain about any aspect of referral or diagnosis, there is a complaints procedure that you can follow. See Local authority and NHS complaints procedure on our website, or call our Autism Helpline on 0808 800 4104 to ask for a printed copy.
Well my partner took him to the doctor yesterday, and he still will not refer him! He has, however, refered him to a phychiatrist, which is better than nothing. He was given a copy of the AQ10 and also some other questionnaires left over from my diagnosis, but simply glanced at them and filed them away. We are going to lodge a complaint, but I am very concerned about my brother having another huge meltdown. It is making me very anxious! Is there anything else we can do?
I had not though of having him fill out an AQ10. That is a very good idea, thank you. I am still concerned that the GP will not listen even though he is required to, but hopefully my partner will be going with him so that may help. I will make her aware of the Autism Act infomation.
Unfortunatley, my mother will, i feel, not be so easy to convince! She has said before that she always thought the he was Autistic and that I had Dyspraxia, but simply did not wish to get us looked at. I shall try to communicate his problems to her more clearly though. Thank you again for your advice.
The GP cannot refuse to refer him. According to the Autism Act and the Autism Strategy your brother has the right to request a referral to an autism assessment service. Tell your brother to complete the AQ10 (http://guidance.nice.org.uk/CG142/AQ10Test/pdf/English & http://docs.autismresearchcentre.com/tests/AQ10.pdf) it's a condensed version of the AQ50 by Simon Baron-Cohen et al and is a useful screening tool for a GP, and to take it to the appointment with the GP.
You could accompany your brother to ensure he is not fobbed off.
Give your mum some information on autism/Asperger's and ask her to read it. She may be in denial. Explain to her that being kicked out of home will not make your brother be able to do all the things she wants him to do. Explain Asperger's is a neurological difference that needs support. That doesn't mean he will never be able to be independent.