Invisible disabilities

amother

Sat, Aug 26 2023, 11:28 pm

We just got home from spending a shabbos with my parents and siblings and while most of it was lovely I can't stop crying. My 5yo has ASD and the judgement I get from other people makes me miserable. I've considered sharing his diagnosis with the family but they are more old school and would probably poo poo it and tell me to discipline more.

I'm crazy but sometimes I think to myself what if it was down syndrome and not ASD? Everyone would be so kind and patient and would be getting help and resources up to wazoo and yet here I am suffering alone with nothing but their rude comments Crying

amother

Fuchsia

Sat, Aug 26 2023, 11:32 pm

Frankly, even if they knew it was ASD, would they actually be kind and helpful? Woudl them offering resources really be a help?
Resources aren't a complete answer.
Having a child with ASD is a journey.
It just is.

I don't think I need more people giving me ideas and "help". I can also imagine everyone telling me 'NO HES NOT -
Your making it more than he is. Everyone just throws around diagnoses nowadays. He's such a cute kid, he just needs xyz."

- mom of a 5 yo with ASD.

amother

Broom

Sat, Aug 26 2023, 11:37 pm

amother OP wrote:

No- but downs isn’t invisible. And it has clear expectations that ASD doesn’t.

If I were you I would share the diagnosis. Who cares if they think it’s dumb, manufactured etc. “hi fam- here’s the diagnosis, here’s what to expect, here’s how we deal with it. Thank you for understanding and please try not to offer advice as we are consulting with professionals and plan to follow those suggestions, and additional advice makes it very hard for us to handle it in thr way we have decided. We know your advice is from a place of caring, but please use the same caring to withhold it so that we can parent in the way that we feel will have the best outcome” and if it’s not respected, start limiting your visits to those family members

amother

Eggshell

Sat, Aug 26 2023, 11:58 pm

It's hard.
Very hard.

Sharing the diagnosis won't help. Maybe though, telling them firmly that you are taking advice from a top therapist in how to deal with him will shut them up.

Invisible disabilities are a nightmare because of the expectations that come with them. Your family's expectations are too high for this child to meet. It will take time, but you are going to have to come to terms with that and be prepared for it when you go to visit. I'm not quick to advise therapy but in this case you should go to someone yourself who can help you mourn the regular child you didn't get.

With Down's syndrome, parents often go through a mourning period and everyone understands that. With ASD, it's often diagnosed later so for a few years, the child does seem ok and then no one expects you to mourn. You need to mourn for yourself so that you can come to terms with it and be strong in other people's faces too.

Hatzlacha! It's a long and hard journey but you can get there.

Mom of 16 yr old with HFASD

amother

Heather

Sun, Aug 27 2023, 12:08 am

I totally get you. Its Hard! I did shared diagnosis. with some family members took me longer to share. I think it depends on each person how they will respond. In my experience I have one family member who tries to understand & listens & gets my kid. She thinks he is adorable, with all his quirks. Another one says im not disciplining enough & is constantly nervous around him.

amother

Broom

Sun, Aug 27 2023, 12:12 am

amother Broom wrote:

Please also be very careful to respect other people in thr home that you are visiting- the children and the adults- if the diagnosis means that your child is in any way out of control and harms other children, or even makes an uncomfortable situation (screaming or other out of control behavior) for the people you are visiting or their guests, you need to have a frank discussion with your hosts about possibly limiting the time that you spend in their house. “I know you want to help with your advice, but BH we are dealing with it. If her behavior makes you uncomfortable, please let me know if we should limit our visits to weekdays or Sundays so that we can leave if it gets out of control”. Your nuclear family’s issues should not have to be tolerated by others unless the others are ok with it. You may also find that respect goes both ways if you are Frank and open about it

nicole81

Sun, Aug 27 2023, 12:22 am

Speak up. Say thanks for your concern but I have no interest in entertaining any judgment for my own reasons. Rinse and repeat. If it continues let them know that you will need to reduce contact if their unsolicited judgement continues.

You can try letting them know and giving them the benefit of the doubt and maybe they'll surprise you. And if not, just let them know that if they can't respect your parenting and empathize with your child's needs, then it's not healthy for them to be part of your child's life.

I dont know why people put up with so much carp from family. It's totally ok to say enough. Done.

amother

Broom

Sun, Aug 27 2023, 12:27 am

nicole81 wrote:

Because family is family. We do whatever we can to keep that connection. That’s why I think being open about things is so important. To each his own I guess

amother

Navy

Sun, Aug 27 2023, 12:55 am

Mom of both, a child with ASD and a child with downs. Each is it's own package, family that will support and understand with do it for either, those that don't get it won't no matter what.
Invisible disabilities are very hard, facing lack of understanding and others expectations of typical behavior is hard. Having others infantize a child with down syndrome, have no expectations and act surprised by very basic skills is hard too. The presumed incompetence can be really frustrating and upsetting.
My suggestion from experience is if it will be a help or support for you to share the diagnosis then do so, if not there is no need and it can set up other frustrations. Give yourself the gift of recognizing your struggle, it's pain and what you juggle. Find friends or others who can support and understand you both where family can't and in the frustration of family. Know that you are doing the best you can with the child hashem gave you and that is what he needs. That is all that matters. Sometimes boundaries, recognizing that comments come from others limitations and not your lack helps.
And know that if my child with down syndrome had an ASD diagnosis there would be many more doors open to additional help and therapies, not less. It's ridiculous but that is how it is in the US.
Op, Hope some of this helps! You are not alone in the trenches, it's education in understanding and accepting neurodiversity that our community needs really badly!

amother

Turquoise

Sun, Aug 27 2023, 9:04 am

I'm so so sorry op. I was in your position sever years back & it was just so hard. The kid in shul with down's was easier & more well behaved yet still received so much understanding while I received zero acknowledgement for all I went through. Honestly I cry when I think back.

It did get easier. As my dc gets older his disability becomes more obvious & I become more comfortable with the whole situation.

amother

Rainbow

Sun, Aug 27 2023, 9:25 am

I totally relate. My son is six and was recently diagnosed with ASD and ADHD. We have not told our family. It isn’t a secret, the school knows, but we haven’t yet shared. My father in law has very little tolerance for my son. Interestingly, I have four nephews with known ASD and he is very compassionate to them. Yet, since my son presents as typical, just loud, which may be his ADHD more than ASD, he gets disciplined a lot.
Nevertheless, I do not wish my child had MORE developmental challenges. One day, perhaps before our next visit there, or before their next visit to us, my husband will
Have to tell his parents. Otherwise, I feel sorry for my child.
People without experience don’t recognize the ASD, but The most interesting thing is that people who themselves have HFSAD recognize his behaviors as ASD and have pointed it out to us.
Perhaps it would be better for you at this point to share your challenges. You might be surprised that there is compassion.

amother

Petunia

Sun, Aug 27 2023, 11:19 am

Question - if there’s a diagnosis of asd (which can be anywhere on a spectrum of behavior), does that mean that no form of discipline is allowed? You mention Downs Syndrome. I’ve been around families with a child or sibling with Down’s syndrome for Shabbos meals. And while the hosts were kind, they sometimes scolded or guided them gently. There were guidelines and boundaries.

amother

Navy

Sun, Aug 27 2023, 12:04 pm

amother Petunia wrote:

Every child should be guided to appropriate behavior on their level. With downs sometimes people intuitively recognize (or ignorantly underestimate) their level. With ASD it's harder to gauge the level if you don't know the child well. And it's knowing how to approach and educate/discipline each child especially when dealing with the literal thinking and lack of flexibility that present with ASD.
You were around families who know their child and treat them accordingly. How does extended family who don't know the child so well handle them? Same with the child with ASD, if you were in their home I'm sure the parents speaking here work on teaching them at their level in the way that's best for them. It's the family who doesn't know them well and blames it all on discipline when it can be sensory dysregulation, difficulty with transitions/changes/new environments, reaction to unfamiliar demands and people that makes it so hard and painful. Many a time it's been insinuated that if I disciplined/demanded of/trained my child better they would keep their yanulka on, sit through a shabbos meal etc. Well guess what, I was thrilled that my child took the time out they needed to read and regulate rather than meltdown or act out. But the recognition and understanding often just isn't there!
Unfortunately, for me the best solution is limiting time spent with such family