what kind of career can one have with a child on the autism spectrum?

[Anonymous]

I'm learning with our teen recently diagnosed with a chronic illness or at minimum one that will take a few years to get under control that it would be impossible to work full-time. I work quite a bit part-time and that's been challenging. Part-time and flexible is what has allowed me to keep working so far.

We have to readjust everything, don't we? Good luck OP in finding something that allows flexibility. Unfortunately it means a pay cut just when expenses are going up medically (or at least in our case).

[Anonymous]

Both me and my husband work fulltime and have two kids - one HFA. We both have flexible jobs and take turns covering the various appointments. We also have a wonderful full time nanny who takes care of the other DS while we cover all these appointments.

It's not easy but it what makes sense for us. I spent a year not working before my son was diagnosed but when we knew there were red flags. I made myself sick with worry and put so much pressure on my DS to make progress. Working helps me keep it in perspective, in addition to helping us pay for all the various therapies.

[Anonymous]

You just do what you have to do. Life doesn't stop because you have a child with autism. I work full time, as does my spouse. I have flexibility... but i still have to get all my work done at my job, even if it takes me int the night doing it.

Many people talk about the appointments that you "have" to have. The truth is that you do the therapies that you can. We do OT private, speech therapy through school. I would like to do ABA... but I just can't afford it or schedule it. It sucks. The truth is that there will never be enough support, enough hours in a day, enough money. You make it work. You have to find balance for yourself and your family.

[Anonymous]

This same thread repeats itself every few months and I'm always amazed by how many posters say they abandoned their careers.

I have three kids, one NT, one with ASD, and one who will likely be diagnosed with HFA. My husband has an extremely demanding job that involves long hours and regular travel, plus I work full time.

We've always had great childcare (full time nanny when kids were younger, now an after school nanny, who takes kids to routine after school appointments, like speech and OT). I've also invoked the FMLA, which gives me a huge amount of flexibility to attend the important appointments, like a IEP mtgs, mtgs with developmental pediatricians, etc., plus enough therapy appointments so I know who the providers are and can periodically check in.

Every family has to figure out what works for them. But I resent posts that suggest that if you want to be there for your SN child you MUST quit your job. That's the decision many people make for understandable reasons, but there are other paths.

[Anonymous]

Hey OP and PPs, another voice chiming in. Our kiddo was diagnosed shortly after 3 and now is 6. I work full time in a very demanding job (60 plus hour weeks) with limited travel, and my husband also works in an equally demanding job with weekly travel. Our kids are our number 1 priority and we work our tails off so that we can afford the best therapy, most opportunities for our child who is somewhere between moderate and HFA right now. We work hard so that we can provide for all our kids when they are older, especially our ASD kiddo who may or may not need help for a lifetime. That is what motivates us.

Yes it's stressful, but having a job where you can make your own hours is key. I usually come home from work, turn all attention on the kids, and then work another 3-6 hours after they go to bed. In addition to evenings, we devote our weekend hours to the kids. I don't think it's the number of hours you spend with your kids, but the quality of the time.

Having a super nanny is also key, or family in the area who can lend support. Also we work so much so we can afford to have all our therapists come to our home, which eliminates the stress of dragging our child around the DC metro area for appointments (which we tried, but exhausted all of us).

Just wanted to say, if you want to work and have a intense career you can do it. You just have to have the right support system, which you can create.

[Anonymous]

Anonymous wrote:This same thread repeats itself every few months and I'm always amazed by how many posters say they abandoned their careers.

I have three kids, one NT, one with ASD, and one who will likely be diagnosed with HFA. My husband has an extremely demanding job that involves long hours and regular travel, plus I work full time.

We've always had great childcare (full time nanny when kids were younger, now an after school nanny, who takes kids to routine after school appointments, like speech and OT). I've also invoked the FMLA, which gives me a huge amount of flexibility to attend the important appointments, like a IEP mtgs, mtgs with developmental pediatricians, etc., plus enough therapy appointments so I know who the providers are and can periodically check in.

Every family has to figure out what works for them. But I resent posts that suggest that if you want to be there for your SN child you MUST quit your job. That's the decision many people make for understandable reasons, but there are other paths.

I agree. Leaving the workforce just isn't an option for us. Nor is hiring a nanny. As PPs have mentioned, we sought jobs that afforded flexibility, including a better commute. They aren't jobs we ever saw ourselves doing but as we navigated the SN path, we learned what worked for us and what didn't.

[Anonymous]

Anonymous wrote:Just wanted to say, if you want to work and have a intense career you can do it. You just have to have the right support system, which you can create.

But not everyone can do this. Not everyone make enough money to be able to afford that right support system. Try to be a bit kinder to those who can't afford a nanny to drive their children everywhere or whose children have such severe behaviors that they can't find anyone to work with them. I'm glad it's worked out for you but some parents can't do it and it's not for lack of smarts about how to do this. Every child is different and some will do fine with parents who can manage their therapies the way you do but others won't.

[Anonymous]

I think the big takeaway is that in order to work full time you need excellent support AT HOME. If you are unable to afford the support, even with a full time job, then it does not make sense to stay at the job as your child will have too many demands.

Full time help is VERY expensive, especially when you have a child with behaviors. Therefore, like everything in life it seems to come down to money- who has enough and who doesn't. Money also affords you the right to get private services that might come with better appointment times.

Let's all support each other with the options that are available.

[Anonymous]

For the full-timers posting here - not every couple with kids with special needs have careers that allow salaries to pay for full-time nannies or even part-time nannies. Consider yourselves very lucky that it works for you. We all do what we gotta do and make it work.

[Anonymous]

Obviously everyone on here is going to have different kids, different salaries, different needs, different flexibility, different help. That said, like another poster said, there's this idea that you *must* do all these things for your kids, and really, for a lot of kids, you just don't need to be doing every single thing you can.

My son was diagnosed with severe ADHD at age 3. Not nearly the same as HFA or ASD, I get it. But arguably a much bigger problem on a day to day basis versus the long term issues of HFA (in the sense that he's highly aggressive, lacks self regulation, and is constantly on the verge of being kicked out of childcare - we were getting daily calls telling us there was something desperately wrong with our kid). At first, we looked at all kinds of solutions. In addition to missing half days here and there for a dev ped appointment, pediatrician, evaluations, etc, the OT told us we needed twice weekly OT, and we needed speech (for ear fluid issues), and the dev ped suggested twice week behavioral therapy. Plus we were advised to look into team sports, swimming to get the energy out, etc etc. A million things that were going to help the issue. I work full time, but with lots of flexibility and cash wasn't a problem, but we tried to pursue this for a few months but this was crazy. And ironically, my son's issues got exponentially worse under stress. Plus, all of these suggestions are unproven, unquantifiable therapies so there's no immediate or guaranteed beneift. I never was able to find a behavioral therapist near us, but talked to a couple on the phone. One of whom said her 7 year old son sounded exactly like mine, and she said I was already using effective parenting strategies. And everything else was hooey at age 3 (including the behavioral therapy she could do). She said he'll either chill out in the next couple years or we'll need meds in a couple years. Another couple therapists pretty much agreed. Hearing some experts (with money to lose from saying this) all admit this gave me the pass I was looking for. We dropped all the craziness, found a preschool that has been awesome, and cut back to once a week speech therapy on site at the school (so doesn't involve me at all!). I'm super happy I still work because it gives me a break from worrying about my son all the time!

I know our story is individual and not everyone has this option, but there are literally limitless things you *can* do for your kids. But for some of us, at what cost? Financial cost? Cost of sanity of having your own career? Cost of quality time lost with your other kids and spouse? And for us, the super high cost of stress. You just don't have to do *everything* you can for your kids.

I think, for *some* parents (note: not all. I'm not talking about you if you really, really need to drive your kids to 30 hours of appointments a week) I think there is a slippery slope that you quit your job to focus on your kid, and then you inevitably FILL your life with all things related to said kid. Even if it's not all necessary, but it definitely justifies your choices. It's a self-created cycle .

[Anonymous]

Anonymous wrote:Obviously everyone on here is going to have different kids, different salaries, different needs, different flexibility, different help. That said, like another poster said, there's this idea that you *must* do all these things for your kids, and really, for a lot of kids, you just don't need to be doing every single thing you can.

My son was diagnosed with severe ADHD at age 3. Not nearly the same as HFA or ASD, I get it. But arguably a much bigger problem on a day to day basis versus the long term issues of HFA (in the sense that he's highly aggressive, lacks self regulation, and is constantly on the verge of being kicked out of childcare - we were getting daily calls telling us there was something desperately wrong with our kid). At first, we looked at all kinds of solutions. In addition to missing half days here and there for a dev ped appointment, pediatrician, evaluations, etc, the OT told us we needed twice weekly OT, and we needed speech (for ear fluid issues), and the dev ped suggested twice week behavioral therapy. Plus we were advised to look into team sports, swimming to get the energy out, etc etc. A million things that were going to help the issue. I work full time, but with lots of flexibility and cash wasn't a problem, but we tried to pursue this for a few months but this was crazy. And ironically, my son's issues got exponentially worse under stress. Plus, all of these suggestions are unproven, unquantifiable therapies so there's no immediate or guaranteed beneift. I never was able to find a behavioral therapist near us, but talked to a couple on the phone. One of whom said her 7 year old son sounded exactly like mine, and she said I was already using effective parenting strategies. And everything else was hooey at age 3 (including the behavioral therapy she could do). She said he'll either chill out in the next couple years or we'll need meds in a couple years. Another couple therapists pretty much agreed. Hearing some experts (with money to lose from saying this) all admit this gave me the pass I was looking for. We dropped all the craziness, found a preschool that has been awesome, and cut back to once a week speech therapy on site at the school (so doesn't involve me at all!). I'm super happy I still work because it gives me a break from worrying about my son all the time!

I know our story is individual and not everyone has this option, but there are literally limitless things you *can* do for your kids. But for some of us, at what cost? Financial cost? Cost of sanity of having your own career? Cost of quality time lost with your other kids and spouse? And for us, the super high cost of stress. You just don't have to do *everything* you can for your kids.

I think, for *some* parents (note: not all. I'm not talking about you if you really, really need to drive your kids to 30 hours of appointments a week) I think there is a slippery slope that you quit your job to focus on your kid, and then you inevitably FILL your life with all things related to said kid. Even if it's not all necessary, but it definitely justifies your choices. It's a self-created cycle .

In a similar boat but also have epilepsy. I also know I would go mad if I did not work. I have to get out for a bit and not obsess or I obsess.

[Anonymous]

Everything you PP wrote about ADHD is true but that's not true for other issues like ASD where there is a ton of research showing how much early intervention matters. It also shows that the more you do at that critical period the more it increases the odds your child will do better in the future.

PP, your child is also very young. A lot of good preschools are able to handle behaviors but you may have a different experience once your child is school age. There are many parents who cannot afford private and can't get sufficient help from the school system. These schools have huge classes and they can't handle behaviors that would have been considered so minor by the preschools that they would not have mentioned them to you. Imagine getting weekly or calls like that for YEARS. This is the reality for some parents on this board who have had to quit their jobs.

[Anonymous]

I am a home, but it wasn't the HFA child than tipped the balance. It was the second child with profound LDs. Well, both of them combined and lack of flexibility in DH's job (with some travel). Mine was okay flexible, but not enough for two children with vastly different needs.

Every family's dynamics and situations are different, so the decision for who works and for how long (ft/pt) will be different. I would say for us, the default was two FT working parents, which didn't work. Then FT for DH and PT for me and that didn't work. So, what works (among the choices we had) for our family is for me to be at home and for DH to work. We are nearing the end of that time and I was going to use this year to transition back into something, but my father became ill and moved in with us last Sept. He is now receiving hospice care at our home so next year will be my transition year. In a way I am being paid, as the money he is saving from being in a nursing home is the money that I will inherit. Another set of choices that is different for each family is aging parent care decisions. We all do what seems to work best for our families based on the specific options we have available.

Good luck to everyone and I hope we are all able to find some balance in our lives.

[Anonymous]

I'm a full time working SN parent who posted above, but I will repeat myself again, so that nobody missed it:

I've invoked the FMLA, which gives me tremendous flexibility to attend appointments and be there for my ASD child.

So, while there are different paths, for anyone who's trying to raise SN kids with two working parents, but challenged by lack of workforce flexibility, learn your legal rights first before quitting your job.

My employer allows me to attend IEP mtgs and therapies on an intermittent basis not out of decency, but because the law is on my side.

[Anonymous]

Not much time now as I'm at work. But remember the FMLA only applies to employers with 50+ employees. I am at a small nonprofit that is flexible but I don't have FMLA protection. Nor can I afford a full time nanny...I just turned down a job with a 20 percent pay raise but crazier hours, a longer commute, and international travel because of my kid. It is what it is.