Parenting a child with LFA

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This is not intended to be an offensive post. The subject is sensitive, but a very real one.

There is one side:

The child with LFA is a human like any other, deserves to be cared for. They do, of course. They were popped out of the genetic generator in the same way everybody was.

The other: In reality, parents of an LFA child commonly suffer a massively decreased quality of life.

Nobody likes to discuss this, but I would say that it's a fact. It's not a matter akin to racism or any kind of hatred - a person(s) essentially loses their freedom at the cost of another. Maybe there is a parent out there who couldn't live with a child like me. That's reality. As a gay man with various disorders I have felt rejection from my parents in the past and while not nice, it is understandable.

There are parents that do raise children with LFA, props to them, that's fantastic. Personally however, I could not sacrifice all that I have to raise a child with a severe handicap. It seems OK to say 'I don't want children' but it is never OK to specify something like this; it's something that most people think but are not allowed to say.

I am genuinely curious, if a parent is unable to care for the LFA child, or does not wish to, what are their options?

Would you be able to cope with a similar situation?


If you find this offensive, I apologize. That's all I can do.

As far as I know, residential care is the only option. This comes with 2 pretty serious caveats that I know of:

1)availability and quality are not uniform, and with funding cuts it becomes increasingly difficult to qualify (unless you can pay out of pocket). I don't think merely being LFA is enough to guarentee placement

2)even good institutional care can't come close to being with family for a child's development. Families go that extra mile to improve a child's quality of life and give them loving attention. But I guess if the parents just can't then those benefits of home life wouldn't have happened anyway.

If I was so overwhelmed and I was scared I was going to snap and kill my child or abuse them, I would report myself to social services and threaten to kill my kid if there was no other help or not enough help.

It really depends upon the individual.

I would say most people with LFA, who would probably be called "level 3" nowadays, would be able to take care, at the very least, their basic needs (ADL's) by adulthood. They probably would not be able to live independently (except, perhaps, in a "group home")--but they certainly are individuals who benefit mightily from the care of compassionate caregivers. Progress, albeit relatively slow, would have been made. There might have been some frustration felt by the caregivers at times--but progress would have always made. They benefit from such things as PECS and AAU's. They might, at times, have seizures. The probably have man co-morbid conditions--physical, emotional, and mental. They are not the ones, however, who are so self-abusive that they require helmets. They are able to take care of their basic needs. They are capable of being happy, of responding, at least somewhat, to people Many of them might not have verbal speech--but could make their needs known in some way. In this case, I would make a concerted effort to take care of this person on my own, or perhaps allow him/her to live in a group home.

If a person, by adulthood, is not able to take care of his/her basic needs, and does not benefit from any intervention, other than the "restraint" type, it would be a much more difficult situation. This is something which requires much thought, and much input from those who have experienced this sort of situation.

All in all, being LFA does not guarantee a life of total disability.

I can't say for sure, since I don't have children at all, but I think I could shoulder the burden. It would not be easy, and it would be very tiring, but I would do it because you do what you have to. Whatever life brings you, you work a little harder and somehow you find a way to keep going.

I know of a family that has 6 kids and one has LFA. He stays at home, no nurse, no home care. His parents and siblings look after him, bathe him, feed him, talk to him. They take him on family outings, and they are careful to be sensitive to his sensory needs. They seems to take good care of him.

The other kids do ballet, singing, gymnastics, theater, soccer, and other extra activities. The mom even performs in the local theater group. My point is, they still have lives. They seem happy. Life for them moves around their sibling/child; it didn't stop.
So, even with a child who needs special care and will never be independent, a family can be happy and live full lives. It just takes a little more hard work.

I like what you posted, Jimmy. It's reflective of the truth: Having someone with LFA in your family could be a delight, as well as a "hindrance."

In reality though having ANY child means you give up freedom. That's what it means. The more kids you have, the LESS freedom. That's called taking on responsibility.

A handicapped child is going to be more taxing on your energy and time, requiring more support from your community but if you truly want to be "free" or, at the very least, fool yourself into believing you are truly that way even if you are not because none of us truly are totally free, then elect not to have any kids because people who want to have everything their way tend to resent having to sacrifice their time, energy, money to anyone else.


Having a normal child is not going to be that easy, either. That's reality.

I would have a lot of difficulty parenting a severely disabled child.

There's a lot of factors involved. It does indeed depend on the individual. My dad has dealt with it better than my mom. Having really good insurance and enough money was a big help to them in being able to get me a lot of treatment and enroll me in special programs and special ed schools.

I figure a baby is full time high maintenance and people manage deal with that. Some have 2 or 3 babies to raise simultaneously. A kid with level 3 pretty much just goes on needing that level of care and maintenance. And it becomes a family thing with everyone pitching in. I know I'm an only child because of how much care I have required.

Luckily for them I progressed to level 2, but I still require a lot more care than the average kid my age. Support is a big issue. When you have a kid with autism or down syndrome or severe cerebral palsy etc. you sort of belong to a special club of parenting and parents of special needs kids band together.

I feel guilty sometimes that my dad can't have a regular son, because he is so much into the father and son thing. But he insists that having me for his son is the best thing ever and has been a rewarding experience for him. He is the sort of guy that really loves a challenge.

Gay man here, so this is really quite hypothetical lol. I wouldn't want to do it, but I believe I could & would. I <3 kids (I have God kids, nephews, their siblings/step siblings etc) & would <3 my own kid too much to not want to raise them just because of the challenges of LFA. I've taken on a lot of other challenges in my life to date & wouldn't be afraid of that one. Life would simply be... different. I might have to adjust other time commitments/schedules, plans and goals, but such would be life.

A family friend has a teenaged daughter with muscular dystrophy. She still has a job/career, 3 other kids, a husband etc. She's had some financial help from her well off father, but even w/o that she's the type of hard working never give up kind of person that just toughs things out. An amazing example. If she can do everything she does for her kid, then I could do everything I needed to for my hypothetical LFA kid.

I just had to add this bit after I finished typing that.. for most of my life I've felt like I should never have kids because I couldn't imagine putting a child through the depression that I've lived through, assuming it would be passed along to them. But now that I've had a much clearer, happier, mind the past couple of years.. obviously my perspective is different. I can imagine having a hypothetical kid, one with LFA, and just doing whatever I need to do vs. my old automatic response to thoughts like that.

Don't feel guilty. I'm sure you two have father/son time, or even mere moments, where he feels the connection you think he's missing out on because he doesn't have a "regular son." Also, if he had a different son instead of you.. he wouldn't have you, and I guarantee he wouldn't choose that if he's anything at all how you've described here & in other posts.

Believe him when he insists that. That's not the sort of thing a man like him would lie about.

See? How could he be truly challenged to his potential w/o having been blessed with you. Everything happens for a reason; even you.

I think a high level of services are extremely valuable and that these can help families who might not have other resources to cope, for example respite care.

While it is often the best case scenario to raise a kid at home, sometimes it's not possible. Once those children's are adults I think it's reasonable to find them a safe and secure group home (we just need more that are high quality). Some disabled individuals may even enjoy the greater independence they get from living away from home.

Some families, especially poorer families or families who don't live near/have supportive families (and even some who do) sacrifise an awful lot for their kids. I don't think it is fair to force them to live under that degree of isolation for the rest of their child's life.

I also think it is important to make sure you've sorted out what will happen to your child after you die, and for this, again, we need better services.

Other families cope well and can't imagine not having their child at home. As long as they are happy with this, then that's fine too.

I've worked with "LFA"/Level 3 children and my nephew is also Level 3 and they are an absolute delight. I don't mean for this post to buy into the 'oh, no, how dreadful...' stereotype. I just think that in some cases severely autistic people (and some people NTs) get along with each other much better as adults when they're not constantly together.

Thanks. I just wish sometimes I could do stuff like play ball with him etc. But he has a lot of fun with me being me and we have a lot of great father son time. We both like to go exploring and sometimes go onto areas that might be trespassing on county or city property. So the idea he came up with is that if we ever get caught and challenged, is to claim that I got away from him, which I thought was hilarious. He laughs stuff off and jokes in a way that makes me feel better about my disabilities. He says that sometimes the best way to deal with adversity is to laugh at it.

I would not be able to raise a child in general let alone one more disabled than me...I imagine I'd still be more of a threat to myself than said child, as far as directly though indirectly it would cause a lot of neglect. I'd say it is important that there are programs to help raise such children where the birth parents are unable...I realize we have adoption and what not but from what I understand much like the mental health system it is a broken system full of abuse as well. I'd say that needs to be changed not sure what steps that would take not sure if its under-funding or just simply badly funded or not prioritized at all.

But yes anyone can read stories of parents who have harmed/neglected children because they couldn't cope with it....and feel anger and rage, and wish horrible things upon them and their family, but that does little to really address it let alone help keep those kids safe.

I do not think what even Aspies think are LFA people aren't really LFA. I was likely considered LFA during the time and a few years after I regressed when I was 2 1/2 years old. Then when I was 5 or 6 years old, when I made even more improvement like speaking again at age 5 (around the same age that kraftiekortie started to speak) and having better adaptive behaviors, I was considered HFA from that point on. kraftiekortie, you were proubably considered "LFA" too between the time of your birth until you were 5.
Severe Autism does not always Equal LFA and Mild Autism does not always equal HFA. In fact I think the terms, HFA, MFA, and LFA are quite useless. For example, someone with Autism might be mild in some areas but debilitating in others in others. I think basing Autism severity is based best on the very individual, not HFA, MFA, or LFA lebels. There are nonverbal people that are indeed aware of the world. I thought that mental age would be best to determine wether an autistic person is HFA and LFA but it was still quite useless. For example, I might be 13 in one area, like maturity, a college grad in another area, like biology, 8 in another sympton like motor clumsiness, 6 in some parts of emotional control, and 16 in social relating. This is how someone with autism typically is and it drastcially varies from autistic person to person. Delays are very uneven in different areas, abilities in symptons instead of being delayed at the same level and being like a 6 year old in ALL areas, abilities, and symptons together in a typical person with an intellectual disability. If you do not believe me, this is what you consider LFA in the video. And that is almost like how I was between the time I regressed (age 2 1/2) and the time I made significant improvement (age 5). Look at how aware the "Low Functioning" person is:

This is one of the better posts on Autistic severity and functioning. If this confuses Aspies it is even more confusing for NT's. This lack of understanding is a prime reason it is so hard to gain acceptance.

A bit confused how they figure you or anyone 'regressed' at the age of 2, or how they figure it out...I mean last I checked 2 year olds are pretty immature, not good at communicating and make a lot of noise, and younger than that well somehow I doubt you where a great speaker at the age of 1 or younger and then lost your speech only to regain it at age 5....how do they know you didn't just get overwhelmed, or that you didn't learn to say a few words but not develop an interest in that way of communicating enough to keep it up consistantly? Not trying to be rude or doubt your condition....just trying to understand, and I tend to be skeptical of doctors/professionals claim that a child has 'regressed' at ages as young as 1, 2 or 3, since I don't understand what there is to regress from at those ages. I mean its like when they've diagnosed a child with severe autism/intellectual disability and are already pushing medications and the option of residential treatment at the parents when the childs maybe 10.5 months old or whatever...I mean isn't that a wee bit young to make such assessments?

Interesting video though, more of this needs to be promoted/made public so people stop assuming low functioning autistics are empty slates/shells with empty heads without thoughts and feelings.