The value of diagnosis

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Hi,

please could you help me with some research I am helping with, looking into how young people on the spectrum and their parents & carers value a diagnosis.

Basically, I am hoping to quantify the tangible benefits of receiving a diagnosis.

I'd really appreciate your thoughts on this - and whether you are responding as a person on the spectrum (and your age) or as a parent/carer.

With many thanks and warmest wishes,

Susan
UK

probably not what your looking for but i was diagnosed at 35. Explained a lifetime of difficulties, gave me a handle on myself. Helped to shine light on other problems and the fact that they could be treated. Opened up a new world of people and made me realise i was not defective. I still struggle, example today was very low functioning but the evening is picking up.

A diagnosis for my son gave me direction I didn't have before. It opened up a world of support that gave me information and resources that has helped me help my son. (such as this website, which I would have never heard of if not for the autism diagnosis, as well as his school he is currently attending, the support groups I'm involved in and the people that I have met in the same situation).

I'm responding as an NT with friends on the spectrum and I think a dx is helpful because it gives the person extra help, in places like schools or colleges, which they otherwise wouldn't have had. Not to mention benefits

My daughter was diagnosed at 16. The value of the diagnosis is phenomenal on many levels.

1. She had answers for why she was the way she was. Since diagnosis she is much more open about things she is struggling with. It has given her the confidence to say "I need help with this". She can now see what is her and what is the Aspergers.

2. People are more understanding and helpful, even when they don't understand. They know it's not her, it's the condition and try harder to look past it.

3. My sanity has been pulled from the depths of hell. Up until diagnosis it was apparantly all my fault. It's not any more.

4. Expectations change. Before diagnosis everyone (myself included) fought against the Aspergers to get her to behave/react normally. Having a formal diagnosis makes it easy to work with the things that can be changed and to just accept the things that can't.

5. Protection in law. eg. My daughter recently had to fly to another country alone, before she really would have been alone, now that she is diagnosed and the airline were informed, they were duty bound to provide extra help to her when she needed it. It also meant that they knew she may need it, so were better prepared. I doubt she could have gone otherwise.

6. Financial support. Any extra help she needs as a result of having Aspergers will now be provided by the relevant authorities, at no cost to her. Learning support, supported travel, accommodation, extra help looking for work and incentives to prospective employers and so much more.

I am the parent of an Aspie child who was diagnosed at age 13.

The diagnosis for my son caused two major changes.

1. As others have said, the diagnosis made all the things we didn't understand, understandable. It completely changed how we addressed his "issues." Considering that, the diagnosis was a tremendous benefit.

2. However, the diagnosis shut off almost all health care insurance. We were squeezed out of the insurance we had (we are self employed), and no other insurance company would take an autistic child. What we ended up with is half of an insurance policy, because of insurance mandated by the state of North Carolina. Consequently, if our son gets smacked up in a traffic accident or contracts some terrible disease, we will only go halfway into financial ruin.

I think I would have preferred that we were told of the Aspergers without a formal diagnosis. For our unique situation, knowing he is Aspergers has been a tremendous benefit, but the actual formal diagnosis has only been a liability.

I'm in Scotland and my son was diagnosed with Asperger's in March last year, aged 7.

Although my son was already receiving support at school and was allocated a Speech and Language Therapist, and a referal to Occupational Therapy, the diagnosis meant that the school had to prepare a formal plan for his Additional Support Needs. Really, all this did was formalise and put in writing what was already being done.

However, the benefit would be that if he were to go to a different, possibly less understanding school, the diagnosis means that his needs cannot be ignored. I find the diagnosis helpful in providing a way in which I can briefly explain his behaviours and needs to others without having to go into long explanations. So, for example, if he goes to a new Sunday School, I can simply say that he is AS and detail some of his more obvious difficulties. So far I haven't encountered anyone in that type of situation who wasn't aware of ASDs and how to accommodate such children.

Finding out about Asperger's and sensory processing difficulties have helped me to understand my son, and myself, better and I feel I am more accommodating and understanding about his behaviours.

It has been a positive experience so far.

Hi,

I just want to thank each of you sincerely for your responses to this question. As a mother of an 8 year old on the autistic spectrum, I have also found there to be great value in receiving a diagnosis. Reading your experiences has been both helpful and enlightening.

It has also helped me to word a similar question that will be put out to ASD networks in the UK in order to better inform the new national Autism Guideline that is currently being worked on.

{{Thank you}}

With warmest wishes,

Susan
UK

We are waiting for a diagnosis and it would be a huge relief. It would mean I am not crazy and that what my child does is not what is considered normal although it is normal for him. We can work on making his life better for him and teach him to cope. We will be able to make him happy again. We have been through hell and finally we may be getting the answer to the questions I have been asking for the last 7 years. We also will be changing doctors who wrote this off for the past 7 years as well!

I just found another advantage that I am well chuffed about. Here parents get paid time off work when their children are sick to take care of them. This covers children upto 16 years. We are now covered until my daughter is 21 because she is diagnosed autistic. Yeah!