Re: AS and depression - Sylvia (was Re: OTRS - Sylvia)

[Guest guest]

Thank you, Helen, for your kind support and incredible insight. My daughter got herdiagnosis at age 17, so imagine the confusion during her lifetime. We do have options for support and I am working to find the right psychiatrist who will listen and monitor anti-depressants, as well as her seizure meds. (The seizures started during our extended caretaking period in 2010-12.) And yes, she does present as a teenager, but wants to be treated as an adult. We are starting with appropriate dress and will move on to transitional help leading, which we hope till lead to employment. Very low self-esteem, no friends locally; friends are from all over the U.S. who have the option to gather twice a year. They, for the most part, have jobs or are in school and this is increasingly depressing for her. She tried higher education twice; didn't work out. She tried working in my office; didn't work out, even with two job coaches. So of course I wonder if there are tests that a psychiatrist can administer that will show us exactly where she is intellectually and what her strengths are. I've got the name of someone highly recommended but we have to wait until October as a " new patient " .

Since it has become apparent that she will never be able to live independently, I have obtain legal guardianship and that has set a new dynamic in motion and she seems relieved. This has allowed me to be more responsible for her emotional and financial issues and she is more willing to work with me on establishing new behavioral patterns. Fortunately she is receiving SSD, and has Medicare and Medicaid. She is warming to the idea of an independent living arrangement but in order to qualify, she has to have a Major Depressive Disorder diagnosis. The psychiatrist will, I assume, assess this possibility.

The autoimmune illness could be part of the picture.  I will look into the testing options and see if we can get an answer there. I'll also look for K.'s posts in the archives.

Sylvia

 

Hi Sylvia,

My heart goes out to you!

When I lost my brother in my early 30's, I had already lost dear friends, relatives and my mom to untimely early deaths, but losing a younger sibling was especially heart-wrenching and shocking.

He was very ill for a couple of years before he died, and the management of his care fell to us, his siblings. It was a roller coaster of emotions with hope as he rallied, then devastation as he had another set-back, then more hope, then the carpet being yanked out again, and on and on. A very empathetic friend who had gone through this said that at times it does feel like they are going to take you with them if the illness does not resolve soon. Towards the end of their suffering, you just want it to resolve one way or another quickly - and then you feel horribly guilty for feeling that way, since this is their journey, not yours. This experience is not unlike what you and your surviving daughter must have gone through, and one year later .. well there's still fallout.

For me, my brother's eventual death did not bring closure, but more sadness, guilt, and an outlook that seemed greyer and greyer over time. It wasn't incapacitating - yet. Having been self supporting since my mid teens, copping out of life wasn't an option. I sought medical help and therapy. A good circle of support really helped, too. Having motivation (a life to get back to living) and peer support may be healing elements that are lacking for your daughter.

It would seem that in a sense, your AS daughter, though around 30, is like a teenager in her outlook and her dependent status. However, she is an adult, so it's even more difficult to force her to do anything. What a double bind for you, mom

Bereavement is certainly one factor, but your daughter has to remember that she isn't the only one. She lost a sister but you lost a child!

It would seem to me that her depression is compounded by a dawning realization that she is headed towards poverty if she does not improve her situation now. She probably does see that her same age peers have been and will go places that she has not and may never be able to, which is depressing her further. I don't know to what extent she is aware of her AS, if she is in denial or the opposite, feeling that it is an oppressive disability.

Does she/can she work now? Was she ever formally diagnosed? What is the level of her disability? It is such that she classifies as an adult who needs assisted independent living? Does she have some sort of disability status, and is she receiving any support? Can she qualify for vocational rehabilitation?

If none of this is in place yet, her level of disability could qualify her for state support and rehabilitation services. GOOD LUCK trying to get it, you'll have to jump through hoops of fire, especially if she is reluctant to be classified as disabled. They are more likely to offer rehabilitation services if the candidate is willing and enthusiastic about improving their situation. But at the age she is at, if something does not change, you know your daughter's living situation in mid life and beyond could be quite dire. If you give specifics, he may be able to advise you if that is the direction you need to take with her.

K. an ASPIRES member, is a dx'd AS adult who might have some ideas for you. Reading his archived posts over the past 5 years might provide some direction for you. never allowed himself to succumb to helplessness and hopelessness, though when he first came to this group five years ago he was certainly having some challenges. We have had the privilege of sharing in his journey and it is inspiring for anyone who is where he was. did have insight into what had been holding him back and he was working on finding the way forward, which he has, admirably. He was willing to put his pride in his pocket and seek a diagnosis, and access whatever help was available for him. Today is actively involved in the autism community, and is a strong self advocate and advocate for others. He is furthering his education to raise his qualifications and income level and plans to work in a field that is ideally suited to his skill set. I know he's busy now but I hope he can give you a message of hope. He's a little older than your daughter, but a relative youngster in our group

The final possibility is that she may have a metabolic or autoimmune illness which is driving the depression. We can discuss that more off list if you want, but then again, she, as an adult, has to have the wherewithal to manage her own physical wellness too. If she truly can not, you may have to get that formal " disability stamp " which I am sure she does not want, but perhaps really needs.

I do hope that other members here, adults with AS and loved ones of adults with AS, will also come forward with their experiences and suggestions.

cyber hugs (and apologies for typos..gotta go now)

Helen

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> Thanks Helen.

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> My biggest hurdle right now is my daughter's depression and I don't know how to help her find her way out of the Black Hole. Any suggestions anyone?

> Sylvia

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> Sent from my iPhone

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