RSS

Tag Archives: autism understanding

Autism: Autistic Parents

The question was:  What are the pros and cons of autistic people having children.

The pros and cons are likely different for each of us, as they are for NTs.

I had a son (at age 19 years 6 months 1 day.) I also ran a daycare for several years, and tried to adopt through child welfare (had the children in my home for 3 years, but never got finalization, and the adoption failed.)

Some pros: Good at maintaining a routine.

Good at making/keeping appointments.

Good with structured activities (reading, singing, crafts, games, cooking, etc.)

Good at teaching.

Read to my son every day (often many times a day) from birth until right before his 14th birthday.

Understood HIS struggles better than most people could, even though we are very different people.

Research! Whatever I am interested in, I research – which, when my son was little, was children. I researched so deeply that when I took my Early Childhood Education at college (when my son was 2–4 years old) everything was review, and I graduated with dean’s honours.

I took my son to playgroup, to the park a lot, to the children’s museum… I put him in soccer, swimming, cubs, youth group, had birthday parties (and I have severe social phobia, and parties are especially hard.) I made an effort like most parents do – and I absolutely loved/love all of my children.

welland

Some cons: It is very difficult for me to communicate well (especially long term) with other adults. I become more anxious as time goes by, which causes people to stop trusting me (I don’t trust others, with good reason.) This had a lot to do with our adoption failure (I wasn’t diagnosed until after – and it is likely they wouldn’t have allowed me to try to adopt if they knew, though I very much disagree with that.)

I research a lot, and write a lot – which overwhelmed other adults trying to work with our family (again in adoption.)

When I get overwhelmed, I shut down – like when my son was born, I was in shock for a couple of weeks. I took care of him, but couldn’t think or focus well. I could have used a lot more help there.

I get overwhelmed easily, and don’t do well at all without sleep. I could have used some help there (my son didn’t sleep more than 20 minutes at a time for his first year.) Many new parents are exhausted. Autistic people might need a lot more support to be able to cope well.

I get overwhelmed easily (I know I am repeating, but this is the struggle.) So when we had 3 high needs foster kids, plus my undiagnosed autistic son, plus myself – I could maintain OUR schedule most of the time so none of us were falling apart, but then we would have the social workers step in and ask to do several things at once because it was more convenient for them – we would all end up falling apart after. Too many appointments at once, people not understanding our need for routine (which is good for children) can cause failure. It is a con. This is on me, I see that – but some understanding in this could make all the difference between success and failure. Again – support. Someone else to deal with an overabundance of appointments/understanding to ensure not too much is asked at once…

When I am overwhelmed, I can’t do everything. I could take care of my child, but for a long time could not keep my apartment clean at the same time. Later I could take care of my home and child, but having to work on top of that was too much. Too many appointments = too much. A lot of life is “too much.” Extra help and supports are often needed for success – as well as understanding that we can’t do it all, though many parents are expected to.

Social skills. Likely someone else will be needed in the child’s life to deal with important social events. As I mentioned, I took my children to a lot of activities – in my mind. The social workers said I was isolating them. I still don’t understand that as we went out a lot – and the summer they said that, I drove across the country, and took my children to visit a lot of family, and go on a lot of outings. I wasn’t diagnosed at the time – if I had been, I might have accepted that I have a ‘blind spot’ in this area. Having someone else to plan birthday parties, play dates, help communicate with teachers and specialists, etc. would be important for the children, and helpful for an autistic parent (so as not to overwhelm them.)

Sensory issues. I have a lot, and many surround smells and foods – especially foods. Personally I could deal with changing messy diapers. I got really fast at this with the daycare, and would NEVER leave a child in a mess – but that is because I am hypersensitive. Someone who is not so sensitive might need help in keeping the children clean. For foods, there are many I can’t have around me (boxed Kraft Dinner – generic included, mushrooms, hamburger, eggs – I am allergic…) For children to have some of these experiences, it would need to be apart from me. That doesn’t mean I couldn’t be a good parent.

Fixations. Rules. Okay… especially when anxious (made worse by judgmental people who don’t understand) I have a really hard time being flexible around rules. For instance, when our children were placed with us, they had very strong attachment issues. We were told not to let other people watch our children, or give them anything (toys, food, etc.) for at least 6 months to allow the children time to settle. So that is what I did – and everyone got upset with me.

Or there is the fact that I can see connections that other people don’t. When my children had sugar, for instance, I could feel it coming off them in waves – even if no one told me they gave it to them. Sugar strongly affected their behaviour, and made things harder, so I didn’t give them sugar. Ever. The same goes for wheat (not gluten, just wheat.) I sweetened with applesauce, or rice syrup, or something. I gave them other grains – rice, millet, chickpea, quinoa… but NEVER wheat.

I got in lots of trouble for that, and others saw it as being rigid and controlling. Perhaps it was – but… understanding and support can go a long way. Understanding that many autistic people can see patterns and connections that other people are unaware of (so don’t dismiss what we are experiencing even if you don’t see it.) I requested a dietitian. Some understanding and support could have gone a long way in getting all of us through this – whether we ended up giving the children sugar and/or wheat, or they provided better alternatives. We (autistic people) tend to get ‘stuck’ in our rules. We see why they are there, and the more attacked we feel, the more ‘stuck’ we get.

It might take more outside support, and a lot more understanding for Autistic parents to succeed – but we can do very well as parents (even thrive) with the right supports and understanding. In fact, being a parent was the single most fulfilling experience of my life – and losing my children through adoption failure the single most traumatic.

In conclusion I believe people with autism can make excellent parents – with good supports and understanding in place – and having children can be such a positive, growing experience for (some) autistic people that I believe it is tragic to deny (us) that experience rather than provide the supports needed for us to succeed.

 

Tags: , , , , , , , , , , , ,

Autism: Apologies

There is this thought that continues to creep into my mind that I don’t love my husband as I should. Perhaps that isn’t the best way to put it, as once written, I suddenly get a picture in my mind of shocked responses from the people who are reading it. I do love my husband. I even like my husband. But I still don’t think I love him as I should.

Easter 2015

The thought grew stronger after I had written my post about wet gloves. Though all I wrote was true, and reflected accurately my experience of the situation, it wasn’t… edifying is the word that comes to mind – towards him.

So I had this constant though in my mind that I should revise the wording of that post. I went away camping for a week, and all the time fully intended to alter it when I got back home, before its scheduled release the following Monday. When I got home, however, I re-read the post and concluded that it was an accurate portrayal of my experience, and to alter it would be… almost a lie. I couldn’t do that.

While I don’t think my response to the situation – though admittedly much more intense than other people might have responded – requires my apology (I stick to what I wrote, and what I felt about that) I do believe I need to apologize for the way he came across – not only in my post, but in my thoughts as well.

It is difficult for people to understand struggles outside of their experiences. It is difficult for people to be able to consider how what they do might strongly affect another person. Especially in terms of such things that most people don’t have strong reactions to – such as heightened sensory issues, or even allergies.

For instance, I have a severe egg allergy. Every year when I go camping, and other people are around, the others seem to have a really difficult time understanding the allergy. They want eggs for breakfast. Pancakes are cooking on the grill. They want to add eggs to a different section of the grill. They don’t understand why I ask them to wait until my food is finished cooking before they add theirs. It isn’t that they are meaning to hurt me, but that they honestly can’t see why this is a problem.

It is the same with wet rubber gloves. Most people do not have sensory issues to the extreme where a bit of water accidentally dripped inside of rubber gloves will cause a full meltdown. It isn’t that when such things happen people are intentionally doing something to hurt me. I know this. It still hurts, but I know it isn’t on purpose.

So when I wrote, I wrote from my experience. My sensory issues cause me pain. Real pain. So it possibly comes across as the person who caused me that pain maybe should have known better. Maybe should have understood. It isn’t… edifying.

The thought continues to come through my head that I don’t love my husband as I should. So how should I love my husband?

Unconditionally.

Yet unconditional love is hard. Really hard. Nearly impossible for an easily hurt, easily offended sinner such as I am. In fact, for all relationships I have had, there is only one person I can think of that I have even come close for – and that is my son.

When my son does something that upsets me; or does things I wish he wouldn’t; or does something that hurts me, or someone else, or himself; or takes the wrong path, or… in that moment what I want most for him is that he overcomes the issue and does better next time. What I feel is a strong desire to reconcile that drowns out all thoughts of pain, or hurt, or anything negative. “See what you have done. Overcome it. Let it go.”

I think everyone should be love like that. I think that is the love my husband should have from me. So I pray, “Please Lord, teach me to love my husband as I love my son.” And I say to my husband, “I am sorry for not loving you like I should. Please be patient with me. God isn’t finished with me yet.”

 

Tags: , , , , , , , , ,

Autism: Too Much Information

People who know me now would often say I am smart… I guess that is the word.

That wasn’t the case when I was a child, as I was so quiet, and rarely revealed my understanding to those who judged. Also, I was so anxious about my schoolwork, that I often failed to hand it in. They thought I was slow, yet never held me back a grade, or referred me to specialists.

Since I have been an adult, however, my grades (at college) have been at the top of my class, and the work I have done outside of school (for our adoption, for seeing the psychiatrist, for Bible studies and such) has been far above what “anyone else has done,” so I am told.

So they think my intelligence is high.

People – teachers included – respond to me as if things that are a challenge for others are easy for me.

Yet I would argue that fact. There is so much I don’t understand.

It is true that I put all of myself into my projects – to the point that I overwhelm those in charge. I have also learned over the years how to study in a way that I memorize the facts well, so I nearly always get exceptionally good grades on tests, and am able to talk about my interests as a specialist.

I am not, however, smart.

I struggle with even the most basic of understanding when I am required to read a lot of details. How to manuals go way over my head. I get frustrated in reading anything with “too much information.” I go into meltdown if there are too many steps to follow.

So often I get things wrong, and people challenge me as if I made the mistake on purpose. I should have been able to see that another choice was better – only I can’t see it.

I can’t read the books of Leviticus or Deuteronomy in the Bible; there are too many rules. I do read them… it is just that I can’t understand. There is just too much there.

I really struggled in trying to find out how to change my home page on my blog, or how to separate my blog posts into categories on separate pages. These were so frustrating, and I ended up breaking down in tears, and asking a friend for help – and still struggled to understand.

While I love drawing simplified floor plans, actually reading detailed blueprints has proven to be a struggle to me. I can stare at the page, and think I understand, but so often get it wrong.

I struggle with slight variations in words, so that multiple choice tests have become an issue for me. Some questions look identical, and yet the answer for each is different.

Today I tried reading through the rules and regulations for getting provincial disability – but there was so much information there, that I could not understand it.

There are so many things I struggle with, and so when people tell me I am ‘smart,’ I cringe. They will be disappointed. They will get upset at me for things beyond my understanding.

At the same time, these same people tend to dismiss me when I talk about my interests, such as when I had my children, and tried to discuss their disabilities – or when I was being tested for my own. They are so certain that they know best, or that I am being negative, when in fact, I am very rarely wrong in these things.

It is difficult to express to others how I can understand so well in some situations, and know so much in terms of my interest, when a simple list of directions can put me in meltdown.

It all depends on how the information is presented, I guess.

I had hoped to have a psycho-educational assessment done as part of my Autism Assessment, however, as an adult, that is not available to me. I suppose I will have to try to figure out on my own why some things are so hard – and to try to explain to others that in some things I just can’t.

However, for those things that I know I would really like them to believe me.

 
Leave a comment

Posted by on November 10, 2015 in Autism: Reality

 

Tags: , , , , , , , , , ,

 
%d bloggers like this: