In-laws aligned: is it not a bare necessity for our young-adult autistic children?
FOR OR AGAINST ME?
A letter of little hope to another mother
Dear R*****,
I believe that is your name, although L. rather I called you “mother of N.”. He also doesn’t want me to know where you live.
I believe we have some rights as women and we must not allow ourselves to be bullied by our children, so let me introduce myself. My name is Sukhasanasister. I am the mother of L.. I am his mentor and his Grandfather is his financial administrator. I mention these two details up front to indicate that my son is sufficiently handicapped by his Autism for the state to appoint us in these legal functions. (Classic Autism according to DSMIV, diagnosed in 2004, or ASD according to DSMV, 2015.)
I sincerely hope you know L. well enough by now, to know how profoundly his Autism affects him and how deceptively competent he otherwise seems.
L. has a normal intelligence and can compensate for the pervasive and chronic characteristics of Autism. He is able to mask his symptoms, especially, to the outside world. This enables short-term integration but also causes decompensational reactions (nervous break-downs) and pathological deceit (cover-ups). As a mother, but also as an ex-wife of an Autistic man (father of L.) I feel passionately that is my duty to inform you of this neuro-pathology.
L. has had special needs for the past 20 years. He has needed 24/7 supervision and assistance. His poor autonomy and low-level of self-reliance was acknowledged by social services and he was awarded the highest possible financial benefit from age 9 till 18 to enable me to continue with his full-time care and offer me occasional relief by way of specialised assistance and monthly week-end breaks at an autism facility. In short, my job has been extremely demanding. As has that of L.’s grandparents, who are my only support.
Most significantly to me personally, is how L.’s grandfather has dedicated every weekend over the past 15 years to training L.. They would work towards provisional certificates (at the Psychiatric Institute’s annexe school) first, and later towards O-Levels. They have also built many Lego Technic projects together, teaching L. patience, motor-coordination, planning and perseverence. There were cultural outings to help L. increase his confidence to being exposed to sensory triggers that otherwise lead to anxiety attacks.
Every Sunday L.’s grandfather would take L. on a walk, rain or shine, teaching him the history of our city or just trying to get L. to learn to communicate and take an interest in the wider world. This, sadly has fallen away since July. Not because L. has outgrown the need, but he cannot find the time anymore. N ties him down.
I will spare you the details of my constant struggle with L.. One does not end up at the day-care department of thePsychiatric Institute (replacing regular schooling) without a very good reason! The world has a massive impact on L., but since he cannot name that, it builds up into a bomb of nervous tension. The release always takes place at home.
N is not a factor that has lessened his tensions. Indeed, L.’s (mental) health has deteriorated disconcertingly since he has met her. His skin conditions do not belie it (dermatologist confirms stress as cause). His lungs are weak (so her smoking does not help). He gets insufficient sleep and falls asleep during the daytime. He was so often disturbed by her at work (on the phone) that he got fired. He has become hopelessly erratic in everything he undertakes (leaves everything in chaos, unfinished, misses appointments etc).
Surely, you must agree there is a sickly attachment disorder in the way they cannot be apart (he says it is not sexual attraction, but there is now a hormonal habit-forming, if you ask me). In any case it is immature by our social standards and it bodes ill for the future, that he cannot rise above it when he needs to. L. is weak-willed and lacks empathy by the nature of his psychiatric disorder, and strong-headed and self-serving by character.
L. and I had agreed that we had to work as a team if we wanted to stay in this house. He would have to see it as flat-sharing and he would have to stick to some reasonable rules (hygiene, tidiness, responsible use of gas/electricity/water). I have no income, so I am dependent on my father. This is my father’s house. We may stay on the terms that L. stays commited to his future, which must include finding full-time day occupation, and ultimately, preferably, a paying job. If this prooves impossible, he will have to be reassessed by a psychiatrist.
The psychiatrist at the Psychiatric Institute was never sure that normalisation would be so easily achieved. He recommended institutionalising L. in B.. I refused to have him committed, wanting to give L. one last chance of “integration”. I did this without the help of medication. We always took the hardest route. I took the task on me of a full-time staff that comes with an institution. This means great discipline and I need to be on top of everything. L. is hardly aware of any of this, because I try to leave him as free as possible. The kind of freedom you allow him, however, is of a different and unstructured nature and it makes my job impossible.
In July I went from fully supporting L. to losing sight of him over-night. Literally. It was insane. It felt like my child had been kidnapped by a cult. It was like living with a drug addict. This was more than a late-adolescent, hot-summer crush on a girl: this was a compulsive-obsession. I had no clue where my son was for days on end. When he returned he was unrecognisable, and from his dilated pupils I could tell he was no longer in control of himself. Who had brainwashed him, I wondered!
Finally, I sought help from the staff at the Psychiatric Institute’s School (where else to go?!). Of course they could do nothing for me with the confidentiality act in place. I had hoped to get in touch with you. Maybe, you, too, were worried about your daughter not coming home at night? Mrs.H. recognised how L. had become entirely “rudderless” and that this made him a danger to himself. She would try to inquire with you casually how you were coping with N. I don’t know if she ever did that. I told her to give you my phone number. I never heard from you. I gave L. my number to give to you. I never heard from you.
L. hopes we can all be friends in the New Year. Fresh start! But there never was a proper start to begin with; only a plunge in at the deep end, and no resurfacing yet! Why should I now be okay with letting N crash at my house? You people are complete strangers to me and have put at risk everything I built up for L..
I am not writing to criticise your daughter. It is misfortunate, perhaps, that I have only heard disturbing things about her (community service order, other defiant incidents, associations with the Mormon Church, unsupervised termination of medication, smoking, drinking, failure to attend school and keep a job, and severe anxiety attacks) but this cannot be enough to fault her as such, eventhough L. is a far more unwritten page and innocent in comparison. I cannot say anything about her personally; besides parents don’t have to approve of their children’s friends, nowadays, anyway.
I do think our children’s backgrounds are very different. Especially religiously, nationally, academically and economically. We live at opposite ends of this city. So I wonder what our families might have in common. Clearly, we can only accept it if our children want to divorce their family for a new life together. Perhaps, L. is happier in your family home. But based on the horrors of the past six months, you may appreciate that I cannot reasonably consider blending our families any time in the near future. L. cannot comprehend this. Furthermore, in my heart of hearts, I do not think L. has made a positive choice; he has been lead by somebody else’s desire and needs until he could not think for himself. Sometimes he seems to be fed up of it, but then she reels him back in. Sometimes he promises to do better at home/in studies, but he fails the very next day when she distracts him again, or “summons” him in panic.
It troubles me that L. speaks of marriage and children with regard to N.. It is not a situation I shall ever accept or become involved in. It is ludicrous to even have to mention it at this stage of his life. When I met her briefly, she left no more than the impression of a typically insecure teenager. It is very infantile of L. not to see he is making a fool of himself to run before he can walk. It would be helpful if you could tone down their expectations at your end. Double enforcement and advice on one line is my last hope of saving L. from himself.
This is how it comes to be that I need to decide whether you are either with me or against me. The Autism Syndrome demands of me to know the difference and set limits for myself. I cannot live with false hope and I also cannot pretend that this situation is not emotionally destroying me.
I feel it is of the utmost importance that we act preventatively. We cannot take this relationship lightly, as if it were between two children. Technically they are adults, and they could run away and be married tomorrow! They are impulsive enough to do anything. L. susses my concerns but fails to back them up with any constructive changes to his life. I know that he is unable with his disability to take such responsible measures for himself by himself.
L. has an impaired mental ability to deal with cause and effect. Applying (emotional) information effectively is problematic for L.. We may add to his Autism the character of an Oppositional Defiant Disorder (argumentative, refuses to comply with requests or rules, deliberately annoys or upsets people, always blames others for his mistakes or misbehavior). This occurs because he cannot manage to take responsibility for himself and think clearly and feel connected to others. Your daughter seems to have a similar disposition, which only enforces this trait in L..
I fully realise there is nothing I can do to stop L.; but the same goes for helping him. He will have to choose willingly for my help and my rules or I will have to resign.
There will be consequences to me letting go. Socially, I will be doing nothing out of the ordinary by asking my son to take his incompatible life-style away with him and do his own thing on his own terrain. A family home does not lend itself for his behaviour and activities.
The Autism problem is not properly understood by society. The prognosis therefor (with this scneario) is grim. Without our network of financial, practical and mental support, L. is likely slowly to slip into a thick mist of his own making.
In sum, what I object to is L.’s obsession with N, and her dependency on him. She does not seem to contribute positively to his future which is understandable in light of all the work she must do on herself, first. L. is not the right person to help her find herself. This would be the blind leading the blind. If you feel this to be otherwise, you may consider yourself the better coach for the pair of them.
If things continue like this, I will give up on L. and I will have to leave this house and so will he. I have told him this for the past 6 months, but I don’t think he registers how serious this situation is. Assisted living is not an option for him, because he needs a psychiatric evaluation for that (which he won't go in for). The waiting list for a Council flat is 8 years. We are not buying him a flat. He does not want to go into student accommodation if he gets into polytechnic next September. I presume he hopes you will have a solution.
The two of them live in a delusion which I sometimes feel you are not doing enough to dispell. I am not sure you CAN by yourself. That is why, initially, I saw US working as a team. Just like mothers organising sleep-overs for 10 year old girls. But I now have to presume you are in accord with them having an adult relationship, sharing a bed - regardless of the claim they make they are not having sex. First the sofa now her bed. It feels wrong to me: from zero friends to this level of intensity. You allow it all the time. Even on the holidays, as if we never celebrated anything at my place. Of course L. will not relate enthusiastically about his home life. Out of sight, out of heart for him. But have you ever considered my feelings? What about all those dinners I cooked he never turned up for?
I am sure you agree: these two have too much leisure time and they have an infantile attitude to money. I am not sure how you envision the pair of them making ends meet.
I find he seldom (takes the time/trouble) to eat well nowadays, and his immune system is low. Over all he especially needs to slow down. If L. didn’t mind about his (skin) condition, it would be one thing, but he is upset by it. On his own, lacking in knowledge on how to take his life into his own hands, he can only turn to precription drugs (which I consider a defeat and not a life-style or root-cause curative measure).
It has crossed my mind: it could all be worse. Of course it could! Drugs, alcohol, sex, pregnancy, crime…. And maybe, this adolescence finally kicking in is a good thing even, helping him to process a traumatic phase in his life (the OCD for germs and nausea during his teenage years). But ONLY if N is as mentally handicapped as L., can we hope they make a long-term match. Otherwise, I can testify with a life of my own marred by autism since childhood, she will suffer under his Autism. Bear in mind, for L. there is no room for self-reflection, and self-improvement must be micro-managed. He is fundamentally motivated by an impulse to secure his own needs and act impulsively on his (milling) thoughts.
I consider it my duty to advise in this regard, with great stress any and every prospective girlfriend of L.. Even autistic women are sensitive to this handicap in others …. Frequently, such men end up with servile but emotionally independent women, who marry only for status (coming from the Far-East or the Soviet Union eg,).
We can no loger merely hope this is short term. Their compulsive natures now cannot simply ease up on the arrangement without causing anxiety and fear of abandonment. But let us not forget how very bored and hyper-active, not to mention anxious N. always is, needing to be entertained and comforted. This feels like she has her claws in him. I don't know what L. gets out of this relationship other than a sense of self-importance.
I hope you see how he cannot support her best interests. It would also be unfair to expect this of him, too, while he still needs to be young, free, and single himself!
Typically, people who have children of that age, are advised to “let go”. They are mistaken to think that I am suffering from empty-nest syndrome, and you are holding onto your daughter by allowing her to do whatever she wants as long as she doesn’t leave home. It is unfair and ignorant to advise mothers like us to let our children go over-night. Our past experience of their behaviours is a good indication for the rocky road ahead. Autism is never over, nor does it get better. Circumstances change, that is all. You get used to it once it has been stablised in a protective, restrictive environment.
There never have been natural transitional phases for L., but this one is the most radically disturbing and artificially induced one for us, yet. It leaves us totally powerless to protect and serve his best interests.
To be frank, I come to you to ask you to help reempower us, by doing your bit to not enable this relationship without specific conditions. Can you not slow N down in this relationship and warn her of the radical consequences it is having for L.? I think once or twice you tried. This impressed L. (to the extent he told me about it). But you have to stick at it on a daily basis for this to have effect and bring about lasting changes.
Once the last straw has broken our camel’s back, there will be no way back for L. into our fragile support network. Despite many family conferences alerting him to his systematic erosion of all that we built up for him; he has been unable to change his ways in the past six months.
My father says that L. is trapped in his relationship. I call it an addiction. My mother is unable to trust anything L. says to her. It’s not so hard for us to let go of L. and finally have lives of our own without the constant care for L.! We are worn out after six nightmarish months. They have been torturous. They have come on top of 20 largely depleting years.
Finally, let me make my standpoint perfectly clear about why I cannot possibly allow N into my house. Firstly, at present, seeing how it started and has developed, I cannot enable this relationship, which interferes with L.’s autism-management and disempowers his support network. Secondly, with these two it is a case of giving a finger and losing a hand unless you set boundaries and goals for everything. I even consider it NEGLECT if we fail them in this.
I will not pretend that I can better control TWO children with their array of mental difficulties and compulsions if I cannot already manage ONE. L. needs to show he can include a girlfriend and integrate her into his OWN normal life. If L. completes his first year polytechnic with flying colours, I will be prepared to have his girlfriend over for a formal dinner, when she may speak up for herself and persuade me why she is an asset and support to my son, and how she intends to assist him in his life-long handicap.
If L. does not get into polytechnic, this March, the damage will have proven virutally impossible to repair. I don’t know if you have a back-up plan? Even if he does get in, we are not out of the woods yet. In fact, iron discipline will be required to make something of this study, which cannot include N. seven days a week.
If he does not get in, and is not willing to try something alternative, I will be closing up my house this summer and emigrating. L. will be homeless. At any time, before then, L. is free to leave and go to court to have his guardianships appealed (good luck to him!). My priority now is to prevent further abuse from him. Not setting a limit to the damage HE is causing his grandparents and myself, would be to fail HIM. How can you live as an honest soul having caused so much suffering just because you have the mentality of a very young child? He is now using both me and my parents for comfort/luxury and you/N. as occupational activity. The actual autism-management that can ensure a sucessful future for him is not being represented by either.
My regards and support to you,
Sukhasanasister
